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This may be the author’s version of a work that was submitted/accepted for publication in the following source: Close, Eliana, Parker, Malcolm, Willmott, Lindy, White, Ben, & Crowden, Andrew (2019) Australian Policies on "Futile" or "Non-beneficial" Treatment at the End of Life: A Qualitative Content Analysis. Journal of Law and Medicine, 27 (2), pp. 415-439. This file was downloaded from: https://eprints.qut.edu.au/180259/ c 2019 Thomson Reuters This work is covered by copyright. Unless the document is being made available under a Creative Commons Licence, you must assume that re-use is limited to personal use and that permission from the copyright owner must be obtained for all other uses. If the docu- ment is available under a Creative Commons License (or other specified license) then refer to the Licence for details of permitted re-use. It is a condition of access that users recog- nise and abide by the legal requirements associated with these rights. If you believe that this work infringes copyright please provide details by email to [email protected] Notice: Please note that this document may not be the Version of Record (i.e. published version) of the work. Author manuscript versions (as Sub- mitted for peer review or as Accepted for publication after peer review) can be identified by an absence of publisher branding and/or typeset appear- ance. If there is any doubt, please refer to the published source. http://sites.thomsonreuters.com.au/journals/category/journal-of-law-and- medicine/
Transcript
Page 1: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

This may be the authorrsquos version of a work that was submittedacceptedfor publication in the following source

Close Eliana Parker Malcolm Willmott Lindy White Ben amp CrowdenAndrew(2019)Australian Policies on Futile or Non-beneficial Treatment at the End ofLife A Qualitative Content AnalysisJournal of Law and Medicine 27 (2) pp 415-439

This file was downloaded from httpseprintsquteduau180259

ccopy 2019 Thomson Reuters

This work is covered by copyright Unless the document is being made available under aCreative Commons Licence you must assume that re-use is limited to personal use andthat permission from the copyright owner must be obtained for all other uses If the docu-ment is available under a Creative Commons License (or other specified license) then referto the Licence for details of permitted re-use It is a condition of access that users recog-nise and abide by the legal requirements associated with these rights If you believe thatthis work infringes copyright please provide details by email to qutcopyrightquteduau

Notice Please note that this document may not be the Version of Record(ie published version) of the work Author manuscript versions (as Sub-mitted for peer review or as Accepted for publication after peer review) canbe identified by an absence of publisher branding andor typeset appear-ance If there is any doubt please refer to the published source

httpsitesthomsonreuterscomaujournalscategoryjournal-of-law-and-medicine

(2019) 27 JLM 415 415

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life A Qualitative Content AnalysisEliana Close Malcolm Parker Lindy Willmott Ben White and Andrew Crowden

A challenge in end-of-life care is requests by patients or their substitute decision-makers for treatment that doctors consider is ldquofutilerdquo or ldquonon-beneficialrdquo Concerns that these concepts are uncertain and subjective have led to calls for medical policies to clarify terminology and to provide procedural solutions to prevent and address disputes This article provides a comprehensive analysis of how Australian medical guidelines and policies on withholding or withdrawing potentially life-sustaining treatment address futility It demonstrates that while the concept is found throughout medical policies and guidelines the terminology employed is inconsistent There is also variability in the extent of guidance given about unilateral decision-making and mechanisms for dispute resolution This is problematic given that the question of further treatment can often only be determined in relation to the individual patientrsquos goals and values We conclude by advocating for the development of a unified policy approach to futile or non-beneficial treatment in Australia

Keywords withholding and withdrawing life-sustaining treatment end of life policy medical guidelines futile treatment non-beneficial treatment dispute resolution

I INTRODUCTION

An estimated 286 of all Australian deaths are preceded by a decision to forgo life-sustaining treatment including mechanical ventilation cardiopulmonary resuscitation artificial nutrition and hydration and medication1 The National Consensus Statement on Essential Elements for Safe and High-quality End-of-Life Care stipulates these decisions should be shared between the medical team and the patient or their substitute decision-maker2 However barriers to shared decision-making mean that many end-of-life discussions do not adequately address a patientrsquos values and goals of care3 A breakdown in shared

Eliana Close PhD Candidate Australian Centre for Health Law Research Faculty of Law Queensland University of Technology Malcolm Parker Emeritus Professor School of Medicine The University of Queensland Lindy Willmott Professor Australian Centre for Health Law Research Faculty of Law Queensland University of Technology Ben White Professor Australian Centre for Health Law Research Faculty of Law Queensland University of Technology Andrew Crowden Associate Professor School of Historical and Philosophical Inquiry The University of Queensland

The authors wish to acknowledge Emeritus Professor Cindy Gallois Professor Nicholas Graves Associate Professor Sarah Winch and Professor Leonie Callaway for their input into the early stages of the analysis Eliana Close was supported by funding from the Australian Research Training Program and the NHMRC Centre of Research Excellence in End-of-Life Care Part of this research was also funded by the Australian Research Council Linkage Projects scheme (LP121000096) and the Royal Brisbane and Womenrsquos Hospital

Conflict of interest declaration None

Correspondence to elianaclosequteduau1 H Kuhse et al ldquoEnd-of-Life Decisions in Australian Medical Practicerdquo (1997) 166(4) Med J Aus 1912 Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgt (National Consensus Statement)3 Barriers include poor communication skills a lack of time for proper discussions and doctorsrsquo own aversion to death See eg LP Scheunemann et al ldquoClinician-family Communication about Patientsrsquo Values and Preferences in Intensive Care Unitsrdquo (2019)

Close Parker Willmott White and Crowden

416 (2019) 27 JLM 415

decision-making can precipitate disputes between doctors4 and patients or their substitute decision-makers which occasionally become intractable and require resolution by the courts Recently conflicts between parents and hospitals over the medical treatment of the infants Charlie Gard5 and Alfie Evans6 drew international attention and became the subject of extensive bioethical and legal discourse7 Beyond the paediatric context futility disputes over adults have also escalated to courts in Australia8 New Zealand9 the United States10 the United Kingdom11 Canada12 and elsewhere13

Despite the high-profile nature of contentious cases court involvement in disputes about life-sustaining treatment is relatively rare While conflicts over life-sustaining treatment appear common most are resolved without recourse to courts or tribunals through communication and negotiation between doctors patients (or their substitute decision-makers) and occasionally other stakeholders including hospital administrators14 Ethical and professional guidelines that set out how doctors should approach these decisions are therefore an important source of regulation15 Sometimes colloquially referred to as ldquomedical futility policiesrdquo these guidelines can serve a variety of regulatory functions They can have a prescriptive function to provide information establish terminology and set standards of good practice They can also be used reactively to navigate conflicts both by those involved and their institutions and by external adjudicators Medical futility policies are considered in the deliberations of clinical ethics committees16 and are used as a benchmark in court proceedings17 and coronial inquests18 Some guidelines also translate (or attempt to translate) legal standards into practice and can elevate the

179(5) JAMA 676 DB White et al ldquoToward Shared Decision Making at the End of Life in Intensive Care Units Opportunities for Improvementrdquo (2007) 167(5) Arch Intern Med 4614 In this article we use the term ldquodoctorrdquo (the term commonly used in the policies reviewed) to refer to a medical practitioner as defined under the Health Practitioner Regulation National Law Act 2009 (Cth) ldquoa person who is registered under this Law in the medical professionrdquo5 Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWHC 972 (Fam)6 Alder Hey Childrenrsquos NHS Foundation Trust v Evans [2018] 2 FLR 1223 [2018] EWHC 308 (Fam)7 See eg J Savulescu ldquoIs It in Charlie Gardrsquos Best Interest to Dierdquo (2017) 389(10082) Lancet 1868 D Wilkinson ldquoBeyond Resources Denying Parental Requests for Futile Treatmentrdquo (2017) 389(10082) Lancet 1866 E Close L Willmott and BP White ldquoCharlie Gard In Defence of the Lawrdquo (2018) 44(7) J Med Ethics 476 I Freckelton ldquoResponding Better to Desperate Parents Warnings from the Alfie Evans Sagardquo (2018) 25(4) JLM 918 D Wilkinson and J Savulescu ldquoAlfie Evans and Charlie Gard ndash Should the Law Changerdquo (2018) 361 BMJ k18918 See eg Messiha v South East Health [2004] NSWSC 1061 Northridge v Central Sydney Area Health Service (2000) 50 NSWLR 549 [2000] NSWSC 12419 See eg Shortland v Northland Health Ltd [1998] 1 NZLR 433 (CA)10 See eg Betancourt v Trinitas Hospital 1 A 3d 823 827 (NJ App Div 2010)11 See eg Re M (Adult Patient) (Minimally Conscious State Withdrawal of Treatment) [2012] 1 WLR 1653 [2011] EWHC 2443 (Fam) Aintree University Hospitals NHS Foundation Trust v James [2014] AC 591 [2013] UKSC 67 R (on the application of Tracey) v Cambridge University Hospitals NHS Foundation Trust [2015] QB 543 [2014] EWCA Civ 822 Briggs v Briggs (No 2) [2017] 4 WLR 37 [2016] EWCOP 5312 See eg Wawrzyniak v Livingstone 2019 ONSC 4900 Cuthbertson v Rasouli [2013] 3 SCR 341 Golubchuk v Salvation Army Grace Hospital 2008 MBQB 4913 See eg Re Lambert (Cour de Cassation June 2019) See also A Bagheri (ed) Medical Futility A Cross-national Study (Imperial College Press 2013)14 TM Pope ldquoTexas Advance Directives Act Nearly a Model Dispute Resolution Mechanism for Intractable Medical Futility Conflictsrdquo (2016) 16(1) QUT Law Rev 22 27ndash29 There is a lack of data on the rates of conflicts over life-sustaining treatment in hospital and the degree to which external (court or tribunal) resolution is sought since many cases do not result in public judgments15 We ascribe to a broad definition of regulation defined as ldquoinfluencing the flow of eventsrdquo C Parker and J Braithwaite ldquoRegulationrdquo in M Tushnet and P Cane (eds) The Oxford Handbook of Legal Studies (OUP 2005) 119 119ndash12316 AJ Newson ldquoThe Value of Clinical Ethics Support in Australian Health Carerdquo (2015) 202(11) Med J Aus 56817 See generally F McDonald ldquoThe Legal System and the Legitimacy of Clinical Guidelinesrdquo (2017) 24 JLM 821 822ndash82318 See eg Inquest into the Death of Jaxon McGrorey-Smith New South Wales State Coronerrsquos Court 14 November 2018 Inquest into the Death of Mrs June Woo Queensland Office of State Coroner 1 June 2009

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 417

minimum standard set by law to promote better more ethical decision-making19 Finally medical futility policies can also play an important role in fostering access to justice and transparent decision-making which includes informing actors about dispute resolution options both inside and outside of the health service20 However whether Australian medical futility policies have the potential to fulfil any of these regulatory functions depends on their content and scope21 This issue is the focus of this article

In contrast to the United States and Europe where a significant medical futility policy released in 2015 has generated extensive commentary22 there has been very little research on Australian medical futility policies23 This study seeks to fill this gap by critically reviewing publicly available Australian policies that are intended to guide doctorsrsquo behaviour when making decisions about withholding or withdrawing life-sustaining treatment from adult patients The article first sets out the conceptual challenges with futility and outlines the approach adopted by the recent international statement mentioned above24 as a comparator to the Australian context The article then describes the qualitative document analysis methodology used to collect categorise and analyse all of the publicly available medical policies guidelines and frameworks that are intended to guide doctorsrsquo decisions to forgo life-sustaining treatment The remainder of the article presents the results of the analysis and discusses gaps and opportunities in the Australian medical futility policy environment The article concludes by arguing that Australia would benefit from a more uniform approach to futility that gives clear guidance to doctors about terminology and how to prevent and address disputes

II THE ROLE OF MEDICAL FUTILITY

The concept of medical futility dates back to Hippocrates who instructed doctors ldquoto refuse to treat those who are lsquoovermasteredrsquo by their diseases realising that in such cases medicine is powerlessrdquo25 The modern interest in futility arose much more recently in the late 1980s and early 1990s26 Advances in medical technology including the proliferation of the intensive care unit (ICU) expanded doctorsrsquo ability to sustain the lives of critically ill patients As medical technology developed there was increasing awareness of the need to limit excessive treatment provided by overzealous doctors to patients who

19 See generally Parker and Braithwaite n 15 123 There are also instances where the law is more demanding than ethical standards or professional guidelines For further discussion see E Jackson ldquoThe Relationship between Medical Law and Good Medical Ethicsrdquo (2015) 41 J Med Ethics 9520 A significant power imbalance can exist between patients (and their substitute decision makers) and other actors in the health care system which can be compounded by differences in culture religion and socio-economic resources See K Curnow ldquoEnd-of-Life Decision-making in a Health Services Setting An Access to Justice Lensrdquo (2016) 23(4) JLM 886 Social injustice can also be perpetuated by bias (often implicit) and discrimination see J Kirby ldquoBalancing Legitimate Critical-care Interests Setting Defensible Care Limits through Policy Developmentrdquo (2016) 16(1) Am J Bioethics 38 4121 It also depends on whether policies are promulgated and have sufficient normative force which some studies have questioned See eg D Goodridge ldquoEnd of Life Care Policies Do They Make a Difference in Practicerdquo (2010) 70(8) Soc Sci Med 116622 GT Bosslet et al ldquoAn Official ATSAACNACCPESICMSCCM Policy Statement Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Unitsrdquo (2015) 191(11) Am J Respir Crit Care Med 1318 This policy was debated in a special edition see M Montello ldquoIntroduction to the Special Issuerdquo (2018) 60(3) Perspect Biol Med 29323 D Martin ldquoMedical Futility in Australiardquo in A Bagheri (ed) Medical Futility A Cross-national Study (Imperial College Press 2013) 119 M Levinson et al ldquoComparison of Not for Resuscitation (NFR) Forms across Five Victorian Health Servicesrdquo (2014) 44(7) Int Med J 671 AC Mills et al ldquoTesting a New Form to Document lsquoGoals-of-Carersquo Discussions Regarding Plans for End-of-Life Care for Patients in an Australian Emergency Departmentrdquo (2018) 30(6) Emerg Med Australas 777 For an Australian review of paediatric policies see N Bhatia and J Tibballs ldquoDeficiencies and Missed Opportunities to Formulate Clinical Guidelines in Australia for Withholding or Withdrawing Life-sustaining Treatment in Severely Disabled and Impaired Infantsrdquo (2015) 12(3) J Bioeth Inq 44924 Bosslet et al n 2225 I Kerridge M Lowe and C Stewart Ethics and Law for the Health Professions (Federation Press 4th ed 2013) 40926 PR Helft M Siegler and J Lantos ldquoThe Rise and Fall of the Futility Movementrdquo (2000) 343(4) N Engl J Med 293 DJC Wilkinson and J Savulescu ldquoKnowing When to Stop Futility in the ICUrdquo (2011) 24(2) Curr Opin Anaesthesiol 160 B White et al ldquoWithholding and Withdrawing Potentially Life-sustaining Treatment Who Should Deciderdquo in I Freckelton and K Petersen (eds) Tensions and Traumas in Health Law (Federation Press 2017) 454 458ndash462

Close Parker Willmott White and Crowden

418 (2019) 27 JLM 415

were extremely unlikely or unable to recover27 At the same time a normative shift away from medical paternalism towards shared decision-making meant futility was also used to combat demands for excessive treatment from patients or their substitute decision-makers28 The central premise was that if treatment was ldquofutilerdquo that is unlikely to sufficiently benefit the patient then doctors were under no legal or ethical obligation to provide it In this sense ldquofutilerdquo is not merely descriptive but rather an indication of the doctorrsquos obligations Engelhardt and Kushf explain ldquo[t]o describe a situation as futile is to determine that it does not merit a particular interventionrdquo29

In 1992 Truog Brett and Frader described the concept of futility as one of the ldquonewest additions to the lexicon of bioethicsrdquo30 While nearly a decade later Helft Siegler and Lantos maintained that interest in the topic had waned31 persistent attention remains32 and empirical studies demonstrate that doctors are familiar with the term and use it in practice33 However there has been no consensus in the medical or ethical literature about what futility means or about empirical markers to delineate it34 Different definitions proposed include

bull Physiological futility ndash Treatment that has no physiologic effect (eg antibiotics for a virus or cardiopulmonary resuscitation for a patient who is in rigor mortis)35

bull Quantitative futility ndash Treatment that has a very low chance of conferring a benefit for example in less than 1 in 100 cases36

bull Qualitative futility ndash Treatment that fails to result in an acceptable quality of life37 or achieving an effect that the patient can appreciate as a benefit38

bull Imminent demise futility ndash Treatment that might confer some physiologic effect but cannot halt impending death39

bull Lethal condition futility ndash Treatment that will address a symptom but will not change the progress of an underlying lethal condition40

The Oxford English Dictionary defines ldquofutilerdquo as ldquo[i]ncapable of producing any result failing utterly of the desired end through intrinsic defect useless ineffectual vainrdquo41 In contrast the definitions above (with the exception of physiological futility) demonstrate that the concept is used to denote treatment beyond that which is strictly incapable of having an effect On this basis many commentators are critical of futility as a concept justifying a unilateral medical determination because in most circumstances assessing whether or not to withhold or withdraw life-sustaining treatment is a subjective exercise that

27 BA Brody and A Halevy ldquoIs Futility a Futile Conceptrdquo (1995) 20(2) J Med Philos 12328 Helft Siegler and Lantos n 26 294 Wilkinson and Savulescu n 26 161 White et al n 26 459ndash46229 HT Engelhardt and G Khushf ldquoFutile Care for the Critically Ill Patientrdquo (1995) 1(4) Curr Opin Crit Care 329 330 See also GT Bosslet B Lo and DB White ldquoResolving Family-clinician Disputes in the Context of Contested Definitions of Futilityrdquo (2018) 60(3) Perspect Biol Med 31430 RD Truog AS Brett and J Frader ldquoThe Problem with Futilityrdquo (1992) 326(23) N Engl J Med 1560 156031 Helft Siegler and Lantos n 2632 White et al n 26 459ndash46233 See eg B White et al ldquoWhat Does lsquoFutilityrsquo Mean An Empirical Study of Doctorsrsquo Perceptionsrdquo (2016) 204(8) Med J Aus 318 R Sibbald J Downar and L Hawryluck ldquoPerceptions of lsquoFutile Carersquo among Caregivers in Intensive Care Unitsrdquo (2007) 177(10) CMAJ 120134 Helft Siegler and Lantos n 26 Wilkinson and Savulescu n 2635 Brody and Halevy n 27 Bosslet et al n 2236 LJ Schneiderman NS Jecker and AR Jonsen ldquoMedical Futility Its Meaning and Ethical Implicationsrdquo (1990) 112(12) Ann Intern Med 94937 Brody and Halevy n 2738 LJ Schneiderman ldquoDefining Medical Futility and Improving Medical Carerdquo (2011) 8(2) J Bioeth Inq 12339 Brody and Halevy n 2740 Brody and Halevy n 2741 OED Online futile adj (OUP September 2019 subscription service) lthttpswwwoedcomgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 419

depends on a patientrsquos values and on the goals of treatment42 For example a patient who is in a persistent vegetative state might have previously expressed strong views that life was worth prolonging no matter her condition and so not regard continued treatment as futile By contrast this treatment could be considered futile by another person who believed that such a life was not worth living

The criticism that futility is a flawed concept has prompted two key responses The first is a semantic shift away from the determinate-sounding ldquofutilityrdquo towards terms that are either more neutral (eg ldquonon-beneficial treatmentrdquo43) or terms that are more explicitly subjective (ie ldquopotentially inappropriate treatmentrdquo44 or ldquodisputed treatmentrdquo45) Indeed although futility still appears in many of the policies considered in this article academic literature increasingly adopts these other terms in particular ldquonon-beneficial treatmentrdquo46 In this article these terms will be used interchangeably but reflecting the terminology of the policies being analysed ldquofutile treatmentrdquo or ldquofutilityrdquo is predominantly used

The second response is to advocate for a ldquoprocedural approachrdquo to decisions47 A procedural approach is directed at establishing fair and transparent processes to arrive at a shared decision or to resolve disputes In Texas this is a binding process set out in legislation48 More commonly procedural approaches are laid out in policies set by hospitals governments or other professional bodies such as medical associations49 A procedural approach typically includes avenues for appeal and review such as obtaining a second opinion review by a hospital ethics committee transfer to another medical practitioner or institution and advising patients or substitute decision-makers of their right to access the courts50

III A KEY INTERNATIONAL APPROACH

As mentioned in the Introduction a number of international critical care organisations produced a significant medical futility policy in 2015 commonly referred to as the ldquoMulti-Society Statementrdquo51 Led by the American Thoracic Society (ATS) part of the impetus for the Multi-Society Statement was that existing professional statements on managing end-of-life conflict differed considerably in their definition of ldquofutilityrdquo and recommendations for management The Statement notes ldquo[c]onflicting guidance from professional societies is problematic because it may exacerbate confusion about this topic among clinicians and policymakersrdquo52 Recognising that these are complex decisions that warrant clear guidance for clinicians the ATS assembled a working group of several medical societies53 to develop a

42 See eg Bosslet et al n 22 Helft Siegler and Lantos n 26 Empirical studies have also confirmed doctors perceive futility is often subjective favouring a qualitative approach See eg White et al n 33 E Close et al ldquoDoctorsrsquo Perceptions of How Resource Limitations Relate to Futility in End-of-Life Decision Making A Qualitative Analysisrdquo (2019) 45(6) J Med Ethics 37343 JL Nates et al ldquoICU Admission Discharge and Triage Guidelines A Framework to Enhance Clinical Operations Development of Institutional Policies and Further Researchrdquo (2016) 44(8) Crit Care Med 1553 AS Brett and LB McCullough ldquoGetting Past Words Futility and the Professional Ethics of Life-sustaining Treatmentrdquo (2018) 60(3) Perspect Biol Med 31944 Bosslet et al n 2245 B White L Willmott and E Close ldquoFutile Non-beneficial Potentially Inappropriate or lsquoDisputedrsquo Treatmentrdquo in N Emmerich et al (eds) Contemporary European Perspectives on the Ethics of End of Life Care (Springer 2020)46 See eg Nates et al n 43 J Downar et al ldquoNonbeneficial Treatment Canada Definitions Causes and Potential Solutions from the Perspective of Healthcare Practitionersrdquo (2015) 43(2) Crit Care Med 270 M Cardona-Morrell et al ldquoNon-beneficial Treatments in Hospital at the End of Life A Systematic Review on Extent of the Problemrdquo (2016) 28(4) Int J Qual Health Care 147 Bosslet et al n 26 S Moratti ldquoThe Development of lsquoMedical Futilityrsquo Towards a Procedural Approach Based on the Role of the Medical Professionrdquo (2009) 35(6) J Med Ethics 369 C Stewart ldquoFutility Determination as a Process Problems with Medical Sovereignty Legal Issues and the Strengths and Weakness of the Procedural Approachrdquo (2011) 8(2) J Bioeth Inq 15548 Advance Directives Act Texas Health and Safety Code sectsect166001ndash166166 (1999)49 D White and T Pope ldquoMedical Futility and Potentially Inappropriate Treatmentrdquo in SJ Younger and RM Arnold (eds) The Oxford Handbook of Ethics at the End of Life (OUP 2018)50 Stewart n 47 White and Pope n 4951 Bosslet et al n 2252 Bosslet et al n 22 132053 The policy was issued by the American Thoracic Society and approved by the American Association of Critical Care Nurses (ACCN) the American College of Chest Physicians (ACCP) the European Society for Intensive Care Medicine (ESICM) and the Society of Critical Care Medicine (SCCM) See Bosslet et al n 22

Close Parker Willmott White and Crowden

420 (2019) 27 JLM 415

framework for decision-making and provide recommendations for preventing and addressing disputes This policy is a useful benchmark for an Australian analysis as it illustrates these two trends discussed in the preceding section changes in terminology and a procedural approach to decisions

The most significant recommendation in the Multi-Society Statement is to narrow the scope of ldquomedical futilityrdquo by drawing a distinction between treatments that are ldquofutilerdquo (which ldquocannot accomplish the intended physiological goalrdquo) and those that are ldquopotentially inappropriaterdquo (which ldquohave at least some chance of accomplishing the effect sought by the patient but clinicians believe that competing ethical considerations justify not providing themrdquo)54 The policy sets out clear procedures for each category of treatment This approach recognises that the majority of decisions about life-sustaining treatment involve potentially inappropriate treatment (warranting a process of negotiation with patients or their substitute decision-makers) not treatment that is physiologically futile (which doctors rightly should unilaterally refuse to provide) While this policy has critics55 in our view Pope rightly argues that by narrowing the scope of the term ldquomedical futilityrdquo the statement ldquooffers a richer and more precise vocabulary that facilitates better ethical decision-makingrdquo56 As such it is an important reference point for critical analyses of policy work on this topic Therefore with this key international comparator in mind the remainder of this article will evaluate the extent to which Australian medical futility policies address both terminology and the decision-making process

IV METHODOLOGY

There is very little discourse about Australian medical policies on futility57 and to our knowledge no comprehensive audit exists of current policies about withholding and withdrawing life-sustaining treatment from adult patients We therefore set out to study Australian policies about foregoing life-sustaining treatment to determine what guidance about futility is provided to Australian doctors who make end-of-life decisions We aimed to identify existing policies on withholding and withdrawing life-sustaining treatment and critically examine the extent to which they address medical futility (or a similar concept) at the end of life and how it is labelled and conceptualised We also aimed to evaluate to what extent the policies provide guidance about the decision-making process including the scope of unilateral decision-making and how to resolve disputes

We adopted Altheidersquos five-stage document analysis method to address some of the challenges of complex health policy analysis58 This is a widely recognised qualitative document analysis method that Altheide et al describe as ldquoan integrated method procedure and technique for locating identifying retrieving and analysing documents for their relevance significance and meaningrdquo59 Altheide et alrsquos five stages are (1) document sampling (2) data collection (3) data coding and organisation (4) data analysis and (5) reporting

54 Bosslet et al n 22 1319 The Multi-Society Statement also discusses ldquolegally discretionary and legally proscribed treatmentsrdquo those governed or prohibited by specific laws policies or procedures55 See eg Schneiderman Jecker and Jonsen n 3656 TM Pope ldquoMedical Futility and Potentially Inappropriate Treatment Better Ethics with More Precise Definitions and Languagerdquo (2018) 60(3) Perspect Biol Med 423 Elsewhere several of the authors advocate for a process that distinguishes physiological futility from value-laden decisions See White et al n 26 476ndash478 White Willmott and Close n 4557 The few studies that exist are limited to institutional policies or do not purport to constitute a comprehensive review See eg Martin n 23 Levinson et al n 23 Mills et al n 2358 G Walt et al ldquolsquoDoingrsquo Health Policy Analysis Methodological and Conceptual Reflections and Challengesrdquo (2008) 23(5) Health Policy Plan 30859 D Altheide et al ldquoEmergent Qualitative Document Analysisrdquo in SN Hesse-Biber and P Leavy (eds) Handbook of Emergent Methods (Guildford Press 2010) 127 The method was pioneered in the 1990s in the context of sociological studies of mass media but has been used more widely since and was recently employed in a study on Australian health policy research A Esbati et al ldquoLegislation Policies and Guidelines Related to Breastfeeding and the Baby Friendly Health Initiative in Australia A Document Analysisrdquo (2018) 42(1) Aust Health Rev 72

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 421

A Stage 1 Document SamplingThis review targeted current publicly available medical policies in all Australian jurisdictions that address decisions to withhold or withdraw life-sustaining treatment We defined ldquopolicyrdquo broadly as a written statement of principle intended to guide doctorsrsquo decisions about clinicalethical aspects of withholding or withdrawing life-sustaining treatment60 Using this broad definition of ldquopolicyrdquo we included documents intended as mere guidance or information not just policies in a formal binding sense Documents meeting these criteria were primarily professional guidelines health department policies position statements ethical statements and frameworks but broader documents aimed at a wider audience including health consumers and medical administrators were included in the initial sampling if they purported to provide specific guidance for doctors We also examined relevant reports intended to inform policy development Overarching medical codes of ethics were included when they made specific statements about withholding or withdrawing life-sustaining treatment or about futility

We excluded institutional policies such as those from hospitals and aged care facilities since these are typically not publicly available61 Strategy documents targeted solely at stakeholders other than doctors and those focused on aspects of end-of-life care other than withholding and withdrawing life-sustaining treatment were excluded for example strategies on focused solely on palliative care62 and advance care directives63 We also excluded purely clinical guidelines directed to specific therapies such as Choosing Wisely Australia64 and organ allocation policies65 Legislation and training modules and education programs for doctors were also excluded as these are distinct from policies

B Stage 2 Data CollectionAs a starting point we identified the bodies that would be likely to have policy on end-of-life care including Australian peak medical bodies and medical colleges and national State and Territory governments AC did an initial review which EC revisited and updated in 201966 For the more recent review EC searched the relevant bodiesrsquo websites using a range of terms including ldquofutile treatmentrdquo ldquofutilityrdquo ldquonon-beneficial treatmentrdquo ldquoinappropriate treatmentrdquo ldquowithholdrdquo ldquowithdrawrdquo ldquotreatment limitationrdquo ldquoend of life and policy or guidelinerdquo ldquoresuscitationrdquo ldquogoals of carerdquo ldquodispute or conflictrdquo EC also examined the professional guidelines and resources sections of all 15 Australian specialist medical colleges67 and searched the health department websites for each Australian State and Territory

60 We developed this from the definition of ldquoinstitutional policyrdquo in Goodridge n 21 1166 ldquodeclarations of the organizationsrsquo deeply held values hellip instructing employees on how to conduct business in a legal ethical and safe mannerrdquo61 Survey methodology is usually required to locate institutional policies See eg J Lemiengre et al ldquoInstitutional Ethics Policies on Medical End-of-Life Decisions A Literature Reviewrdquo (2007) 83(2) Health Policy 13162 See eg Palliative Care Australia National Palliative Care Standards (5th ed 2018) lthttppalliativecareorgauwp-contentuploadsdlm_uploads201811PalliativeCare-National-Standards-2018_Nov-webpdfgt63 See eg The Clinical Technical and Ethical Principal Committee of the Australian Health Ministersrsquo Advisory Council A National Framework for Advance Care Directives (Australian Health Ministers Advisory Council 2011) lthttpwwwcoaghealthcouncilgovauPortals0A20National20Framework20for20Advance20Care20Directives_September202011pdfgt Queensland Government Department of Health Advance Care Planning Clinical Guidelines (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0037688618acp-guidelinespdfgt64 See eg Choosing Wisely Australia The Royal Australian College of General Practitioners Tests Treatments and Procedures Clinicians and Consumers Should Question (NPS MedicineWise 2015ndash2016) lthttpwwwchoosingwiselyorgaurecommendationsracgpgt65 See eg The Transplantation Society of Australia and New Zealand Clinical Guidelines for Organ Transplantation from Deceased Donors (2019) lthttpswwwtsanzcomauTSANZ_Clinical_Guidelines_Version2013[6986]pdfgt National Health and Medical Research Council Ethical Guidelines for Organ Transplantation from Deceased Donors (2016) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-organ-transplantation-deceased-donorsgt66 Results of the review are current as of 1 November 201967 Australian Health Practitioner Regulation Agency Approved Programs of Study (AHPRA amp National Boards) lthttpswwwahpragovaueducationapproved-programs-of-studyaspxref=medical20practitioneramptype=specialistgt The colleges are the Australasian College for Emergency Medicine (ACEM) the Australasian College of Dermatologists (ACD) the Australasian College of Sport and Exercise Physicians (ACSEP) the Australia and New Zealand College of Anaesthetists (ANZCA) the

Close Parker Willmott White and Crowden

422 (2019) 27 JLM 415

The above terms were also queried using the Google search engine and in MEDLINEPUBMED and Scopus academic databases in combination with the term ldquoAustraliardquo

C Stage 3 Data Coding and OrganisationBased on the initial searches EC created a database of documents that potentially met the inclusion criteria EC and MP reviewed and discussed all documents that did not clearly meet the inclusion criteria and arrived at a final list of policies to include in this review which all authors agreed on These were assigned to one of three groups

bull Category 1 Commonwealth government documentsbull Category 2 StateTerritory government documents andbull Category 3 Professional organisation documents

Documents were grouped into these categories to facilitate ease of comparison across documents by similar authors and to more easily identify which policies would apply to a given doctor in a specific specialty in a specific jurisdiction For example while the Category 1 policies would in theory apply to all doctors across Australia an intensive care doctor working in Queensland would be subject to only the Queensland documents from Category 2 and the relevant professional organisation documents in Category 3

D Stage 4 Data AnalysisOnce the list of policies was settled EC uploaded them into NVivo 12 (QSR International Pty Ltd 2018) and developed a list of initial codes which formed the basis for the protocol EC coded the policies by comparing and contrasting key differences between the policies and between the categories68 EC also developed Excel matrices to summarise the policies and facilitate comparisons of how futility was defined and guidance given about the decision-making process69

E Stage 5 ReportStage 5 of Altheidersquos method is synthesising and interpreting the results which is set out in the next two parts

V RESULTS

The results are grouped into three main themes (1) the scope and source of medical futility policies in Australia (2) terminology used to describe futility or a like concept and (3) the extent of guidance about the decision-making process and dispute resolution

A Scope and Source of Australian Medical Futility PoliciesAcross Australia we located 23 policies that met the inclusion criteria (Table 1) Ten policies were from State and Territory governments (Category 2) Another ten policies were from professional organisations (Category 3) with five of these from national medical associations and societies (Category 3a) and five from medical colleges (Category 3b) There were three relevant policies issued by the Commonwealth Government (Category 1)

Australian College of Rural and Remote Medicine (ACRRM) the College of Intensive Care Medicine of Australia and New Zealand (CICM) the Royal Australasian College of Medical Administrators (RACMA) the Royal Australasian College of Obstetricians amp Gynaecologists (RANZCOG) the Royal Australasian College of Physicians (RACP) the Royal Australasian College of Surgeons (RACS) the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) Royal Australian and New Zealand College of Psychiatrists (RANZCP) the Royal Australian and New Zealand College of Radiologists (RANZCR) the Royal Australian College of General Practitioners (RACGP) and the Royal College of Pathologists of Australia (RCPA)68 DL Altheide and CJ Schneider ldquoProcess of Qualitative Document Analysisrdquo in Qualitative Media Analysis (SAGE Publications 2nd ed 2013)69 M Miles M Huberman and J Saldantildea Qualitative Data Analysis A Methods Sourcebook (SAGE Publications 3rd ed 2014)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 423

TABLE 1 Current Australian Policies That Address Decision Making about Withholding or Withdrawing Life-sustaining Treatment andor Futile Treatment at the End of Life

Source Name of Document (Year) Brief Description

Category 1 ndash Commonwealth Government

Australian Commission on Safety and Quality in Health Care

National Consensus Statement Essential Elements for Safe and High-Quality End-of-Life Care (2015)A

40-page document setting out suggested practice for end-of-life care in acute settings including guiding principles and corresponding actions

Medical Board of Australia

Good Medical Practice A Code of Conduct for Doctors in Australia (2014)B

25-page code setting out the standards of professional and ethical conduct for all registered doctors in Australia Section 312 is dedicated to end-of-life care

National Health and Medical Research Council

Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)C

66-page ethical framework to guide decision-making for persons in post-coma unresponsiveness (PCU) or a minimally responsive state

Category 2 ndash State and Territory Governments

New South Wales Government Department of Health

End-of-Life Care and Decision-Making ndash Guidelines (2005)D

17-page document setting out a process for reaching end-of-life decisions Includes principles and recommendations for shared decision-making

Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010)E

56-page report providing recommendations for how to navigate end-of-life conflicts in the hospital setting

Using Resuscitation Plans in End of Life Decisions (2014)F

21-page policy directive describing the standards and principles for the use of resuscitation plans (orders to use or withhold resuscitation measures) in patients 29 days and older

Queensland Government Department of Health

End-of-Life Care Guidelines for Decision-Making About Withholding and Withdrawing Life-Sustaining Measures from Adult Patients (2018)G

176-page reference document intended to support health professionals administrators policy-makers decision-managers who are involved in decision-making about life-sustaining measures

South Australia Government Department of Health

Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (2014)H

33-page policy directive directed at assisting health professionals to meet their legal obligations when providing medical assessment or treatment to patients who cannot consent due to a lack of voluntariness communication difficulties or impaired decision-making capacity

Consent to Medical Treatment and Health Care Policy Guideline (2014)I

39-page policy guideline aimed at providing guidance in meeting legislative requirements under guardianship and health care consent legislation including avenues for dispute resolution

Resuscitation Planning ndash 7 Step Pathway (2016)J

25-page policy directive aimed at health professionals and consumers that sets out a transparent process to make and document decisions about resuscitation and other life-sustaining treatments

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 2: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

(2019) 27 JLM 415 415

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life A Qualitative Content AnalysisEliana Close Malcolm Parker Lindy Willmott Ben White and Andrew Crowden

A challenge in end-of-life care is requests by patients or their substitute decision-makers for treatment that doctors consider is ldquofutilerdquo or ldquonon-beneficialrdquo Concerns that these concepts are uncertain and subjective have led to calls for medical policies to clarify terminology and to provide procedural solutions to prevent and address disputes This article provides a comprehensive analysis of how Australian medical guidelines and policies on withholding or withdrawing potentially life-sustaining treatment address futility It demonstrates that while the concept is found throughout medical policies and guidelines the terminology employed is inconsistent There is also variability in the extent of guidance given about unilateral decision-making and mechanisms for dispute resolution This is problematic given that the question of further treatment can often only be determined in relation to the individual patientrsquos goals and values We conclude by advocating for the development of a unified policy approach to futile or non-beneficial treatment in Australia

Keywords withholding and withdrawing life-sustaining treatment end of life policy medical guidelines futile treatment non-beneficial treatment dispute resolution

I INTRODUCTION

An estimated 286 of all Australian deaths are preceded by a decision to forgo life-sustaining treatment including mechanical ventilation cardiopulmonary resuscitation artificial nutrition and hydration and medication1 The National Consensus Statement on Essential Elements for Safe and High-quality End-of-Life Care stipulates these decisions should be shared between the medical team and the patient or their substitute decision-maker2 However barriers to shared decision-making mean that many end-of-life discussions do not adequately address a patientrsquos values and goals of care3 A breakdown in shared

Eliana Close PhD Candidate Australian Centre for Health Law Research Faculty of Law Queensland University of Technology Malcolm Parker Emeritus Professor School of Medicine The University of Queensland Lindy Willmott Professor Australian Centre for Health Law Research Faculty of Law Queensland University of Technology Ben White Professor Australian Centre for Health Law Research Faculty of Law Queensland University of Technology Andrew Crowden Associate Professor School of Historical and Philosophical Inquiry The University of Queensland

The authors wish to acknowledge Emeritus Professor Cindy Gallois Professor Nicholas Graves Associate Professor Sarah Winch and Professor Leonie Callaway for their input into the early stages of the analysis Eliana Close was supported by funding from the Australian Research Training Program and the NHMRC Centre of Research Excellence in End-of-Life Care Part of this research was also funded by the Australian Research Council Linkage Projects scheme (LP121000096) and the Royal Brisbane and Womenrsquos Hospital

Conflict of interest declaration None

Correspondence to elianaclosequteduau1 H Kuhse et al ldquoEnd-of-Life Decisions in Australian Medical Practicerdquo (1997) 166(4) Med J Aus 1912 Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgt (National Consensus Statement)3 Barriers include poor communication skills a lack of time for proper discussions and doctorsrsquo own aversion to death See eg LP Scheunemann et al ldquoClinician-family Communication about Patientsrsquo Values and Preferences in Intensive Care Unitsrdquo (2019)

Close Parker Willmott White and Crowden

416 (2019) 27 JLM 415

decision-making can precipitate disputes between doctors4 and patients or their substitute decision-makers which occasionally become intractable and require resolution by the courts Recently conflicts between parents and hospitals over the medical treatment of the infants Charlie Gard5 and Alfie Evans6 drew international attention and became the subject of extensive bioethical and legal discourse7 Beyond the paediatric context futility disputes over adults have also escalated to courts in Australia8 New Zealand9 the United States10 the United Kingdom11 Canada12 and elsewhere13

Despite the high-profile nature of contentious cases court involvement in disputes about life-sustaining treatment is relatively rare While conflicts over life-sustaining treatment appear common most are resolved without recourse to courts or tribunals through communication and negotiation between doctors patients (or their substitute decision-makers) and occasionally other stakeholders including hospital administrators14 Ethical and professional guidelines that set out how doctors should approach these decisions are therefore an important source of regulation15 Sometimes colloquially referred to as ldquomedical futility policiesrdquo these guidelines can serve a variety of regulatory functions They can have a prescriptive function to provide information establish terminology and set standards of good practice They can also be used reactively to navigate conflicts both by those involved and their institutions and by external adjudicators Medical futility policies are considered in the deliberations of clinical ethics committees16 and are used as a benchmark in court proceedings17 and coronial inquests18 Some guidelines also translate (or attempt to translate) legal standards into practice and can elevate the

179(5) JAMA 676 DB White et al ldquoToward Shared Decision Making at the End of Life in Intensive Care Units Opportunities for Improvementrdquo (2007) 167(5) Arch Intern Med 4614 In this article we use the term ldquodoctorrdquo (the term commonly used in the policies reviewed) to refer to a medical practitioner as defined under the Health Practitioner Regulation National Law Act 2009 (Cth) ldquoa person who is registered under this Law in the medical professionrdquo5 Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWHC 972 (Fam)6 Alder Hey Childrenrsquos NHS Foundation Trust v Evans [2018] 2 FLR 1223 [2018] EWHC 308 (Fam)7 See eg J Savulescu ldquoIs It in Charlie Gardrsquos Best Interest to Dierdquo (2017) 389(10082) Lancet 1868 D Wilkinson ldquoBeyond Resources Denying Parental Requests for Futile Treatmentrdquo (2017) 389(10082) Lancet 1866 E Close L Willmott and BP White ldquoCharlie Gard In Defence of the Lawrdquo (2018) 44(7) J Med Ethics 476 I Freckelton ldquoResponding Better to Desperate Parents Warnings from the Alfie Evans Sagardquo (2018) 25(4) JLM 918 D Wilkinson and J Savulescu ldquoAlfie Evans and Charlie Gard ndash Should the Law Changerdquo (2018) 361 BMJ k18918 See eg Messiha v South East Health [2004] NSWSC 1061 Northridge v Central Sydney Area Health Service (2000) 50 NSWLR 549 [2000] NSWSC 12419 See eg Shortland v Northland Health Ltd [1998] 1 NZLR 433 (CA)10 See eg Betancourt v Trinitas Hospital 1 A 3d 823 827 (NJ App Div 2010)11 See eg Re M (Adult Patient) (Minimally Conscious State Withdrawal of Treatment) [2012] 1 WLR 1653 [2011] EWHC 2443 (Fam) Aintree University Hospitals NHS Foundation Trust v James [2014] AC 591 [2013] UKSC 67 R (on the application of Tracey) v Cambridge University Hospitals NHS Foundation Trust [2015] QB 543 [2014] EWCA Civ 822 Briggs v Briggs (No 2) [2017] 4 WLR 37 [2016] EWCOP 5312 See eg Wawrzyniak v Livingstone 2019 ONSC 4900 Cuthbertson v Rasouli [2013] 3 SCR 341 Golubchuk v Salvation Army Grace Hospital 2008 MBQB 4913 See eg Re Lambert (Cour de Cassation June 2019) See also A Bagheri (ed) Medical Futility A Cross-national Study (Imperial College Press 2013)14 TM Pope ldquoTexas Advance Directives Act Nearly a Model Dispute Resolution Mechanism for Intractable Medical Futility Conflictsrdquo (2016) 16(1) QUT Law Rev 22 27ndash29 There is a lack of data on the rates of conflicts over life-sustaining treatment in hospital and the degree to which external (court or tribunal) resolution is sought since many cases do not result in public judgments15 We ascribe to a broad definition of regulation defined as ldquoinfluencing the flow of eventsrdquo C Parker and J Braithwaite ldquoRegulationrdquo in M Tushnet and P Cane (eds) The Oxford Handbook of Legal Studies (OUP 2005) 119 119ndash12316 AJ Newson ldquoThe Value of Clinical Ethics Support in Australian Health Carerdquo (2015) 202(11) Med J Aus 56817 See generally F McDonald ldquoThe Legal System and the Legitimacy of Clinical Guidelinesrdquo (2017) 24 JLM 821 822ndash82318 See eg Inquest into the Death of Jaxon McGrorey-Smith New South Wales State Coronerrsquos Court 14 November 2018 Inquest into the Death of Mrs June Woo Queensland Office of State Coroner 1 June 2009

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 417

minimum standard set by law to promote better more ethical decision-making19 Finally medical futility policies can also play an important role in fostering access to justice and transparent decision-making which includes informing actors about dispute resolution options both inside and outside of the health service20 However whether Australian medical futility policies have the potential to fulfil any of these regulatory functions depends on their content and scope21 This issue is the focus of this article

In contrast to the United States and Europe where a significant medical futility policy released in 2015 has generated extensive commentary22 there has been very little research on Australian medical futility policies23 This study seeks to fill this gap by critically reviewing publicly available Australian policies that are intended to guide doctorsrsquo behaviour when making decisions about withholding or withdrawing life-sustaining treatment from adult patients The article first sets out the conceptual challenges with futility and outlines the approach adopted by the recent international statement mentioned above24 as a comparator to the Australian context The article then describes the qualitative document analysis methodology used to collect categorise and analyse all of the publicly available medical policies guidelines and frameworks that are intended to guide doctorsrsquo decisions to forgo life-sustaining treatment The remainder of the article presents the results of the analysis and discusses gaps and opportunities in the Australian medical futility policy environment The article concludes by arguing that Australia would benefit from a more uniform approach to futility that gives clear guidance to doctors about terminology and how to prevent and address disputes

II THE ROLE OF MEDICAL FUTILITY

The concept of medical futility dates back to Hippocrates who instructed doctors ldquoto refuse to treat those who are lsquoovermasteredrsquo by their diseases realising that in such cases medicine is powerlessrdquo25 The modern interest in futility arose much more recently in the late 1980s and early 1990s26 Advances in medical technology including the proliferation of the intensive care unit (ICU) expanded doctorsrsquo ability to sustain the lives of critically ill patients As medical technology developed there was increasing awareness of the need to limit excessive treatment provided by overzealous doctors to patients who

19 See generally Parker and Braithwaite n 15 123 There are also instances where the law is more demanding than ethical standards or professional guidelines For further discussion see E Jackson ldquoThe Relationship between Medical Law and Good Medical Ethicsrdquo (2015) 41 J Med Ethics 9520 A significant power imbalance can exist between patients (and their substitute decision makers) and other actors in the health care system which can be compounded by differences in culture religion and socio-economic resources See K Curnow ldquoEnd-of-Life Decision-making in a Health Services Setting An Access to Justice Lensrdquo (2016) 23(4) JLM 886 Social injustice can also be perpetuated by bias (often implicit) and discrimination see J Kirby ldquoBalancing Legitimate Critical-care Interests Setting Defensible Care Limits through Policy Developmentrdquo (2016) 16(1) Am J Bioethics 38 4121 It also depends on whether policies are promulgated and have sufficient normative force which some studies have questioned See eg D Goodridge ldquoEnd of Life Care Policies Do They Make a Difference in Practicerdquo (2010) 70(8) Soc Sci Med 116622 GT Bosslet et al ldquoAn Official ATSAACNACCPESICMSCCM Policy Statement Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Unitsrdquo (2015) 191(11) Am J Respir Crit Care Med 1318 This policy was debated in a special edition see M Montello ldquoIntroduction to the Special Issuerdquo (2018) 60(3) Perspect Biol Med 29323 D Martin ldquoMedical Futility in Australiardquo in A Bagheri (ed) Medical Futility A Cross-national Study (Imperial College Press 2013) 119 M Levinson et al ldquoComparison of Not for Resuscitation (NFR) Forms across Five Victorian Health Servicesrdquo (2014) 44(7) Int Med J 671 AC Mills et al ldquoTesting a New Form to Document lsquoGoals-of-Carersquo Discussions Regarding Plans for End-of-Life Care for Patients in an Australian Emergency Departmentrdquo (2018) 30(6) Emerg Med Australas 777 For an Australian review of paediatric policies see N Bhatia and J Tibballs ldquoDeficiencies and Missed Opportunities to Formulate Clinical Guidelines in Australia for Withholding or Withdrawing Life-sustaining Treatment in Severely Disabled and Impaired Infantsrdquo (2015) 12(3) J Bioeth Inq 44924 Bosslet et al n 2225 I Kerridge M Lowe and C Stewart Ethics and Law for the Health Professions (Federation Press 4th ed 2013) 40926 PR Helft M Siegler and J Lantos ldquoThe Rise and Fall of the Futility Movementrdquo (2000) 343(4) N Engl J Med 293 DJC Wilkinson and J Savulescu ldquoKnowing When to Stop Futility in the ICUrdquo (2011) 24(2) Curr Opin Anaesthesiol 160 B White et al ldquoWithholding and Withdrawing Potentially Life-sustaining Treatment Who Should Deciderdquo in I Freckelton and K Petersen (eds) Tensions and Traumas in Health Law (Federation Press 2017) 454 458ndash462

Close Parker Willmott White and Crowden

418 (2019) 27 JLM 415

were extremely unlikely or unable to recover27 At the same time a normative shift away from medical paternalism towards shared decision-making meant futility was also used to combat demands for excessive treatment from patients or their substitute decision-makers28 The central premise was that if treatment was ldquofutilerdquo that is unlikely to sufficiently benefit the patient then doctors were under no legal or ethical obligation to provide it In this sense ldquofutilerdquo is not merely descriptive but rather an indication of the doctorrsquos obligations Engelhardt and Kushf explain ldquo[t]o describe a situation as futile is to determine that it does not merit a particular interventionrdquo29

In 1992 Truog Brett and Frader described the concept of futility as one of the ldquonewest additions to the lexicon of bioethicsrdquo30 While nearly a decade later Helft Siegler and Lantos maintained that interest in the topic had waned31 persistent attention remains32 and empirical studies demonstrate that doctors are familiar with the term and use it in practice33 However there has been no consensus in the medical or ethical literature about what futility means or about empirical markers to delineate it34 Different definitions proposed include

bull Physiological futility ndash Treatment that has no physiologic effect (eg antibiotics for a virus or cardiopulmonary resuscitation for a patient who is in rigor mortis)35

bull Quantitative futility ndash Treatment that has a very low chance of conferring a benefit for example in less than 1 in 100 cases36

bull Qualitative futility ndash Treatment that fails to result in an acceptable quality of life37 or achieving an effect that the patient can appreciate as a benefit38

bull Imminent demise futility ndash Treatment that might confer some physiologic effect but cannot halt impending death39

bull Lethal condition futility ndash Treatment that will address a symptom but will not change the progress of an underlying lethal condition40

The Oxford English Dictionary defines ldquofutilerdquo as ldquo[i]ncapable of producing any result failing utterly of the desired end through intrinsic defect useless ineffectual vainrdquo41 In contrast the definitions above (with the exception of physiological futility) demonstrate that the concept is used to denote treatment beyond that which is strictly incapable of having an effect On this basis many commentators are critical of futility as a concept justifying a unilateral medical determination because in most circumstances assessing whether or not to withhold or withdraw life-sustaining treatment is a subjective exercise that

27 BA Brody and A Halevy ldquoIs Futility a Futile Conceptrdquo (1995) 20(2) J Med Philos 12328 Helft Siegler and Lantos n 26 294 Wilkinson and Savulescu n 26 161 White et al n 26 459ndash46229 HT Engelhardt and G Khushf ldquoFutile Care for the Critically Ill Patientrdquo (1995) 1(4) Curr Opin Crit Care 329 330 See also GT Bosslet B Lo and DB White ldquoResolving Family-clinician Disputes in the Context of Contested Definitions of Futilityrdquo (2018) 60(3) Perspect Biol Med 31430 RD Truog AS Brett and J Frader ldquoThe Problem with Futilityrdquo (1992) 326(23) N Engl J Med 1560 156031 Helft Siegler and Lantos n 2632 White et al n 26 459ndash46233 See eg B White et al ldquoWhat Does lsquoFutilityrsquo Mean An Empirical Study of Doctorsrsquo Perceptionsrdquo (2016) 204(8) Med J Aus 318 R Sibbald J Downar and L Hawryluck ldquoPerceptions of lsquoFutile Carersquo among Caregivers in Intensive Care Unitsrdquo (2007) 177(10) CMAJ 120134 Helft Siegler and Lantos n 26 Wilkinson and Savulescu n 2635 Brody and Halevy n 27 Bosslet et al n 2236 LJ Schneiderman NS Jecker and AR Jonsen ldquoMedical Futility Its Meaning and Ethical Implicationsrdquo (1990) 112(12) Ann Intern Med 94937 Brody and Halevy n 2738 LJ Schneiderman ldquoDefining Medical Futility and Improving Medical Carerdquo (2011) 8(2) J Bioeth Inq 12339 Brody and Halevy n 2740 Brody and Halevy n 2741 OED Online futile adj (OUP September 2019 subscription service) lthttpswwwoedcomgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 419

depends on a patientrsquos values and on the goals of treatment42 For example a patient who is in a persistent vegetative state might have previously expressed strong views that life was worth prolonging no matter her condition and so not regard continued treatment as futile By contrast this treatment could be considered futile by another person who believed that such a life was not worth living

The criticism that futility is a flawed concept has prompted two key responses The first is a semantic shift away from the determinate-sounding ldquofutilityrdquo towards terms that are either more neutral (eg ldquonon-beneficial treatmentrdquo43) or terms that are more explicitly subjective (ie ldquopotentially inappropriate treatmentrdquo44 or ldquodisputed treatmentrdquo45) Indeed although futility still appears in many of the policies considered in this article academic literature increasingly adopts these other terms in particular ldquonon-beneficial treatmentrdquo46 In this article these terms will be used interchangeably but reflecting the terminology of the policies being analysed ldquofutile treatmentrdquo or ldquofutilityrdquo is predominantly used

The second response is to advocate for a ldquoprocedural approachrdquo to decisions47 A procedural approach is directed at establishing fair and transparent processes to arrive at a shared decision or to resolve disputes In Texas this is a binding process set out in legislation48 More commonly procedural approaches are laid out in policies set by hospitals governments or other professional bodies such as medical associations49 A procedural approach typically includes avenues for appeal and review such as obtaining a second opinion review by a hospital ethics committee transfer to another medical practitioner or institution and advising patients or substitute decision-makers of their right to access the courts50

III A KEY INTERNATIONAL APPROACH

As mentioned in the Introduction a number of international critical care organisations produced a significant medical futility policy in 2015 commonly referred to as the ldquoMulti-Society Statementrdquo51 Led by the American Thoracic Society (ATS) part of the impetus for the Multi-Society Statement was that existing professional statements on managing end-of-life conflict differed considerably in their definition of ldquofutilityrdquo and recommendations for management The Statement notes ldquo[c]onflicting guidance from professional societies is problematic because it may exacerbate confusion about this topic among clinicians and policymakersrdquo52 Recognising that these are complex decisions that warrant clear guidance for clinicians the ATS assembled a working group of several medical societies53 to develop a

42 See eg Bosslet et al n 22 Helft Siegler and Lantos n 26 Empirical studies have also confirmed doctors perceive futility is often subjective favouring a qualitative approach See eg White et al n 33 E Close et al ldquoDoctorsrsquo Perceptions of How Resource Limitations Relate to Futility in End-of-Life Decision Making A Qualitative Analysisrdquo (2019) 45(6) J Med Ethics 37343 JL Nates et al ldquoICU Admission Discharge and Triage Guidelines A Framework to Enhance Clinical Operations Development of Institutional Policies and Further Researchrdquo (2016) 44(8) Crit Care Med 1553 AS Brett and LB McCullough ldquoGetting Past Words Futility and the Professional Ethics of Life-sustaining Treatmentrdquo (2018) 60(3) Perspect Biol Med 31944 Bosslet et al n 2245 B White L Willmott and E Close ldquoFutile Non-beneficial Potentially Inappropriate or lsquoDisputedrsquo Treatmentrdquo in N Emmerich et al (eds) Contemporary European Perspectives on the Ethics of End of Life Care (Springer 2020)46 See eg Nates et al n 43 J Downar et al ldquoNonbeneficial Treatment Canada Definitions Causes and Potential Solutions from the Perspective of Healthcare Practitionersrdquo (2015) 43(2) Crit Care Med 270 M Cardona-Morrell et al ldquoNon-beneficial Treatments in Hospital at the End of Life A Systematic Review on Extent of the Problemrdquo (2016) 28(4) Int J Qual Health Care 147 Bosslet et al n 26 S Moratti ldquoThe Development of lsquoMedical Futilityrsquo Towards a Procedural Approach Based on the Role of the Medical Professionrdquo (2009) 35(6) J Med Ethics 369 C Stewart ldquoFutility Determination as a Process Problems with Medical Sovereignty Legal Issues and the Strengths and Weakness of the Procedural Approachrdquo (2011) 8(2) J Bioeth Inq 15548 Advance Directives Act Texas Health and Safety Code sectsect166001ndash166166 (1999)49 D White and T Pope ldquoMedical Futility and Potentially Inappropriate Treatmentrdquo in SJ Younger and RM Arnold (eds) The Oxford Handbook of Ethics at the End of Life (OUP 2018)50 Stewart n 47 White and Pope n 4951 Bosslet et al n 2252 Bosslet et al n 22 132053 The policy was issued by the American Thoracic Society and approved by the American Association of Critical Care Nurses (ACCN) the American College of Chest Physicians (ACCP) the European Society for Intensive Care Medicine (ESICM) and the Society of Critical Care Medicine (SCCM) See Bosslet et al n 22

Close Parker Willmott White and Crowden

420 (2019) 27 JLM 415

framework for decision-making and provide recommendations for preventing and addressing disputes This policy is a useful benchmark for an Australian analysis as it illustrates these two trends discussed in the preceding section changes in terminology and a procedural approach to decisions

The most significant recommendation in the Multi-Society Statement is to narrow the scope of ldquomedical futilityrdquo by drawing a distinction between treatments that are ldquofutilerdquo (which ldquocannot accomplish the intended physiological goalrdquo) and those that are ldquopotentially inappropriaterdquo (which ldquohave at least some chance of accomplishing the effect sought by the patient but clinicians believe that competing ethical considerations justify not providing themrdquo)54 The policy sets out clear procedures for each category of treatment This approach recognises that the majority of decisions about life-sustaining treatment involve potentially inappropriate treatment (warranting a process of negotiation with patients or their substitute decision-makers) not treatment that is physiologically futile (which doctors rightly should unilaterally refuse to provide) While this policy has critics55 in our view Pope rightly argues that by narrowing the scope of the term ldquomedical futilityrdquo the statement ldquooffers a richer and more precise vocabulary that facilitates better ethical decision-makingrdquo56 As such it is an important reference point for critical analyses of policy work on this topic Therefore with this key international comparator in mind the remainder of this article will evaluate the extent to which Australian medical futility policies address both terminology and the decision-making process

IV METHODOLOGY

There is very little discourse about Australian medical policies on futility57 and to our knowledge no comprehensive audit exists of current policies about withholding and withdrawing life-sustaining treatment from adult patients We therefore set out to study Australian policies about foregoing life-sustaining treatment to determine what guidance about futility is provided to Australian doctors who make end-of-life decisions We aimed to identify existing policies on withholding and withdrawing life-sustaining treatment and critically examine the extent to which they address medical futility (or a similar concept) at the end of life and how it is labelled and conceptualised We also aimed to evaluate to what extent the policies provide guidance about the decision-making process including the scope of unilateral decision-making and how to resolve disputes

We adopted Altheidersquos five-stage document analysis method to address some of the challenges of complex health policy analysis58 This is a widely recognised qualitative document analysis method that Altheide et al describe as ldquoan integrated method procedure and technique for locating identifying retrieving and analysing documents for their relevance significance and meaningrdquo59 Altheide et alrsquos five stages are (1) document sampling (2) data collection (3) data coding and organisation (4) data analysis and (5) reporting

54 Bosslet et al n 22 1319 The Multi-Society Statement also discusses ldquolegally discretionary and legally proscribed treatmentsrdquo those governed or prohibited by specific laws policies or procedures55 See eg Schneiderman Jecker and Jonsen n 3656 TM Pope ldquoMedical Futility and Potentially Inappropriate Treatment Better Ethics with More Precise Definitions and Languagerdquo (2018) 60(3) Perspect Biol Med 423 Elsewhere several of the authors advocate for a process that distinguishes physiological futility from value-laden decisions See White et al n 26 476ndash478 White Willmott and Close n 4557 The few studies that exist are limited to institutional policies or do not purport to constitute a comprehensive review See eg Martin n 23 Levinson et al n 23 Mills et al n 2358 G Walt et al ldquolsquoDoingrsquo Health Policy Analysis Methodological and Conceptual Reflections and Challengesrdquo (2008) 23(5) Health Policy Plan 30859 D Altheide et al ldquoEmergent Qualitative Document Analysisrdquo in SN Hesse-Biber and P Leavy (eds) Handbook of Emergent Methods (Guildford Press 2010) 127 The method was pioneered in the 1990s in the context of sociological studies of mass media but has been used more widely since and was recently employed in a study on Australian health policy research A Esbati et al ldquoLegislation Policies and Guidelines Related to Breastfeeding and the Baby Friendly Health Initiative in Australia A Document Analysisrdquo (2018) 42(1) Aust Health Rev 72

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 421

A Stage 1 Document SamplingThis review targeted current publicly available medical policies in all Australian jurisdictions that address decisions to withhold or withdraw life-sustaining treatment We defined ldquopolicyrdquo broadly as a written statement of principle intended to guide doctorsrsquo decisions about clinicalethical aspects of withholding or withdrawing life-sustaining treatment60 Using this broad definition of ldquopolicyrdquo we included documents intended as mere guidance or information not just policies in a formal binding sense Documents meeting these criteria were primarily professional guidelines health department policies position statements ethical statements and frameworks but broader documents aimed at a wider audience including health consumers and medical administrators were included in the initial sampling if they purported to provide specific guidance for doctors We also examined relevant reports intended to inform policy development Overarching medical codes of ethics were included when they made specific statements about withholding or withdrawing life-sustaining treatment or about futility

We excluded institutional policies such as those from hospitals and aged care facilities since these are typically not publicly available61 Strategy documents targeted solely at stakeholders other than doctors and those focused on aspects of end-of-life care other than withholding and withdrawing life-sustaining treatment were excluded for example strategies on focused solely on palliative care62 and advance care directives63 We also excluded purely clinical guidelines directed to specific therapies such as Choosing Wisely Australia64 and organ allocation policies65 Legislation and training modules and education programs for doctors were also excluded as these are distinct from policies

B Stage 2 Data CollectionAs a starting point we identified the bodies that would be likely to have policy on end-of-life care including Australian peak medical bodies and medical colleges and national State and Territory governments AC did an initial review which EC revisited and updated in 201966 For the more recent review EC searched the relevant bodiesrsquo websites using a range of terms including ldquofutile treatmentrdquo ldquofutilityrdquo ldquonon-beneficial treatmentrdquo ldquoinappropriate treatmentrdquo ldquowithholdrdquo ldquowithdrawrdquo ldquotreatment limitationrdquo ldquoend of life and policy or guidelinerdquo ldquoresuscitationrdquo ldquogoals of carerdquo ldquodispute or conflictrdquo EC also examined the professional guidelines and resources sections of all 15 Australian specialist medical colleges67 and searched the health department websites for each Australian State and Territory

60 We developed this from the definition of ldquoinstitutional policyrdquo in Goodridge n 21 1166 ldquodeclarations of the organizationsrsquo deeply held values hellip instructing employees on how to conduct business in a legal ethical and safe mannerrdquo61 Survey methodology is usually required to locate institutional policies See eg J Lemiengre et al ldquoInstitutional Ethics Policies on Medical End-of-Life Decisions A Literature Reviewrdquo (2007) 83(2) Health Policy 13162 See eg Palliative Care Australia National Palliative Care Standards (5th ed 2018) lthttppalliativecareorgauwp-contentuploadsdlm_uploads201811PalliativeCare-National-Standards-2018_Nov-webpdfgt63 See eg The Clinical Technical and Ethical Principal Committee of the Australian Health Ministersrsquo Advisory Council A National Framework for Advance Care Directives (Australian Health Ministers Advisory Council 2011) lthttpwwwcoaghealthcouncilgovauPortals0A20National20Framework20for20Advance20Care20Directives_September202011pdfgt Queensland Government Department of Health Advance Care Planning Clinical Guidelines (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0037688618acp-guidelinespdfgt64 See eg Choosing Wisely Australia The Royal Australian College of General Practitioners Tests Treatments and Procedures Clinicians and Consumers Should Question (NPS MedicineWise 2015ndash2016) lthttpwwwchoosingwiselyorgaurecommendationsracgpgt65 See eg The Transplantation Society of Australia and New Zealand Clinical Guidelines for Organ Transplantation from Deceased Donors (2019) lthttpswwwtsanzcomauTSANZ_Clinical_Guidelines_Version2013[6986]pdfgt National Health and Medical Research Council Ethical Guidelines for Organ Transplantation from Deceased Donors (2016) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-organ-transplantation-deceased-donorsgt66 Results of the review are current as of 1 November 201967 Australian Health Practitioner Regulation Agency Approved Programs of Study (AHPRA amp National Boards) lthttpswwwahpragovaueducationapproved-programs-of-studyaspxref=medical20practitioneramptype=specialistgt The colleges are the Australasian College for Emergency Medicine (ACEM) the Australasian College of Dermatologists (ACD) the Australasian College of Sport and Exercise Physicians (ACSEP) the Australia and New Zealand College of Anaesthetists (ANZCA) the

Close Parker Willmott White and Crowden

422 (2019) 27 JLM 415

The above terms were also queried using the Google search engine and in MEDLINEPUBMED and Scopus academic databases in combination with the term ldquoAustraliardquo

C Stage 3 Data Coding and OrganisationBased on the initial searches EC created a database of documents that potentially met the inclusion criteria EC and MP reviewed and discussed all documents that did not clearly meet the inclusion criteria and arrived at a final list of policies to include in this review which all authors agreed on These were assigned to one of three groups

bull Category 1 Commonwealth government documentsbull Category 2 StateTerritory government documents andbull Category 3 Professional organisation documents

Documents were grouped into these categories to facilitate ease of comparison across documents by similar authors and to more easily identify which policies would apply to a given doctor in a specific specialty in a specific jurisdiction For example while the Category 1 policies would in theory apply to all doctors across Australia an intensive care doctor working in Queensland would be subject to only the Queensland documents from Category 2 and the relevant professional organisation documents in Category 3

D Stage 4 Data AnalysisOnce the list of policies was settled EC uploaded them into NVivo 12 (QSR International Pty Ltd 2018) and developed a list of initial codes which formed the basis for the protocol EC coded the policies by comparing and contrasting key differences between the policies and between the categories68 EC also developed Excel matrices to summarise the policies and facilitate comparisons of how futility was defined and guidance given about the decision-making process69

E Stage 5 ReportStage 5 of Altheidersquos method is synthesising and interpreting the results which is set out in the next two parts

V RESULTS

The results are grouped into three main themes (1) the scope and source of medical futility policies in Australia (2) terminology used to describe futility or a like concept and (3) the extent of guidance about the decision-making process and dispute resolution

A Scope and Source of Australian Medical Futility PoliciesAcross Australia we located 23 policies that met the inclusion criteria (Table 1) Ten policies were from State and Territory governments (Category 2) Another ten policies were from professional organisations (Category 3) with five of these from national medical associations and societies (Category 3a) and five from medical colleges (Category 3b) There were three relevant policies issued by the Commonwealth Government (Category 1)

Australian College of Rural and Remote Medicine (ACRRM) the College of Intensive Care Medicine of Australia and New Zealand (CICM) the Royal Australasian College of Medical Administrators (RACMA) the Royal Australasian College of Obstetricians amp Gynaecologists (RANZCOG) the Royal Australasian College of Physicians (RACP) the Royal Australasian College of Surgeons (RACS) the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) Royal Australian and New Zealand College of Psychiatrists (RANZCP) the Royal Australian and New Zealand College of Radiologists (RANZCR) the Royal Australian College of General Practitioners (RACGP) and the Royal College of Pathologists of Australia (RCPA)68 DL Altheide and CJ Schneider ldquoProcess of Qualitative Document Analysisrdquo in Qualitative Media Analysis (SAGE Publications 2nd ed 2013)69 M Miles M Huberman and J Saldantildea Qualitative Data Analysis A Methods Sourcebook (SAGE Publications 3rd ed 2014)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 423

TABLE 1 Current Australian Policies That Address Decision Making about Withholding or Withdrawing Life-sustaining Treatment andor Futile Treatment at the End of Life

Source Name of Document (Year) Brief Description

Category 1 ndash Commonwealth Government

Australian Commission on Safety and Quality in Health Care

National Consensus Statement Essential Elements for Safe and High-Quality End-of-Life Care (2015)A

40-page document setting out suggested practice for end-of-life care in acute settings including guiding principles and corresponding actions

Medical Board of Australia

Good Medical Practice A Code of Conduct for Doctors in Australia (2014)B

25-page code setting out the standards of professional and ethical conduct for all registered doctors in Australia Section 312 is dedicated to end-of-life care

National Health and Medical Research Council

Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)C

66-page ethical framework to guide decision-making for persons in post-coma unresponsiveness (PCU) or a minimally responsive state

Category 2 ndash State and Territory Governments

New South Wales Government Department of Health

End-of-Life Care and Decision-Making ndash Guidelines (2005)D

17-page document setting out a process for reaching end-of-life decisions Includes principles and recommendations for shared decision-making

Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010)E

56-page report providing recommendations for how to navigate end-of-life conflicts in the hospital setting

Using Resuscitation Plans in End of Life Decisions (2014)F

21-page policy directive describing the standards and principles for the use of resuscitation plans (orders to use or withhold resuscitation measures) in patients 29 days and older

Queensland Government Department of Health

End-of-Life Care Guidelines for Decision-Making About Withholding and Withdrawing Life-Sustaining Measures from Adult Patients (2018)G

176-page reference document intended to support health professionals administrators policy-makers decision-managers who are involved in decision-making about life-sustaining measures

South Australia Government Department of Health

Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (2014)H

33-page policy directive directed at assisting health professionals to meet their legal obligations when providing medical assessment or treatment to patients who cannot consent due to a lack of voluntariness communication difficulties or impaired decision-making capacity

Consent to Medical Treatment and Health Care Policy Guideline (2014)I

39-page policy guideline aimed at providing guidance in meeting legislative requirements under guardianship and health care consent legislation including avenues for dispute resolution

Resuscitation Planning ndash 7 Step Pathway (2016)J

25-page policy directive aimed at health professionals and consumers that sets out a transparent process to make and document decisions about resuscitation and other life-sustaining treatments

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 3: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Close Parker Willmott White and Crowden

416 (2019) 27 JLM 415

decision-making can precipitate disputes between doctors4 and patients or their substitute decision-makers which occasionally become intractable and require resolution by the courts Recently conflicts between parents and hospitals over the medical treatment of the infants Charlie Gard5 and Alfie Evans6 drew international attention and became the subject of extensive bioethical and legal discourse7 Beyond the paediatric context futility disputes over adults have also escalated to courts in Australia8 New Zealand9 the United States10 the United Kingdom11 Canada12 and elsewhere13

Despite the high-profile nature of contentious cases court involvement in disputes about life-sustaining treatment is relatively rare While conflicts over life-sustaining treatment appear common most are resolved without recourse to courts or tribunals through communication and negotiation between doctors patients (or their substitute decision-makers) and occasionally other stakeholders including hospital administrators14 Ethical and professional guidelines that set out how doctors should approach these decisions are therefore an important source of regulation15 Sometimes colloquially referred to as ldquomedical futility policiesrdquo these guidelines can serve a variety of regulatory functions They can have a prescriptive function to provide information establish terminology and set standards of good practice They can also be used reactively to navigate conflicts both by those involved and their institutions and by external adjudicators Medical futility policies are considered in the deliberations of clinical ethics committees16 and are used as a benchmark in court proceedings17 and coronial inquests18 Some guidelines also translate (or attempt to translate) legal standards into practice and can elevate the

179(5) JAMA 676 DB White et al ldquoToward Shared Decision Making at the End of Life in Intensive Care Units Opportunities for Improvementrdquo (2007) 167(5) Arch Intern Med 4614 In this article we use the term ldquodoctorrdquo (the term commonly used in the policies reviewed) to refer to a medical practitioner as defined under the Health Practitioner Regulation National Law Act 2009 (Cth) ldquoa person who is registered under this Law in the medical professionrdquo5 Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWHC 972 (Fam)6 Alder Hey Childrenrsquos NHS Foundation Trust v Evans [2018] 2 FLR 1223 [2018] EWHC 308 (Fam)7 See eg J Savulescu ldquoIs It in Charlie Gardrsquos Best Interest to Dierdquo (2017) 389(10082) Lancet 1868 D Wilkinson ldquoBeyond Resources Denying Parental Requests for Futile Treatmentrdquo (2017) 389(10082) Lancet 1866 E Close L Willmott and BP White ldquoCharlie Gard In Defence of the Lawrdquo (2018) 44(7) J Med Ethics 476 I Freckelton ldquoResponding Better to Desperate Parents Warnings from the Alfie Evans Sagardquo (2018) 25(4) JLM 918 D Wilkinson and J Savulescu ldquoAlfie Evans and Charlie Gard ndash Should the Law Changerdquo (2018) 361 BMJ k18918 See eg Messiha v South East Health [2004] NSWSC 1061 Northridge v Central Sydney Area Health Service (2000) 50 NSWLR 549 [2000] NSWSC 12419 See eg Shortland v Northland Health Ltd [1998] 1 NZLR 433 (CA)10 See eg Betancourt v Trinitas Hospital 1 A 3d 823 827 (NJ App Div 2010)11 See eg Re M (Adult Patient) (Minimally Conscious State Withdrawal of Treatment) [2012] 1 WLR 1653 [2011] EWHC 2443 (Fam) Aintree University Hospitals NHS Foundation Trust v James [2014] AC 591 [2013] UKSC 67 R (on the application of Tracey) v Cambridge University Hospitals NHS Foundation Trust [2015] QB 543 [2014] EWCA Civ 822 Briggs v Briggs (No 2) [2017] 4 WLR 37 [2016] EWCOP 5312 See eg Wawrzyniak v Livingstone 2019 ONSC 4900 Cuthbertson v Rasouli [2013] 3 SCR 341 Golubchuk v Salvation Army Grace Hospital 2008 MBQB 4913 See eg Re Lambert (Cour de Cassation June 2019) See also A Bagheri (ed) Medical Futility A Cross-national Study (Imperial College Press 2013)14 TM Pope ldquoTexas Advance Directives Act Nearly a Model Dispute Resolution Mechanism for Intractable Medical Futility Conflictsrdquo (2016) 16(1) QUT Law Rev 22 27ndash29 There is a lack of data on the rates of conflicts over life-sustaining treatment in hospital and the degree to which external (court or tribunal) resolution is sought since many cases do not result in public judgments15 We ascribe to a broad definition of regulation defined as ldquoinfluencing the flow of eventsrdquo C Parker and J Braithwaite ldquoRegulationrdquo in M Tushnet and P Cane (eds) The Oxford Handbook of Legal Studies (OUP 2005) 119 119ndash12316 AJ Newson ldquoThe Value of Clinical Ethics Support in Australian Health Carerdquo (2015) 202(11) Med J Aus 56817 See generally F McDonald ldquoThe Legal System and the Legitimacy of Clinical Guidelinesrdquo (2017) 24 JLM 821 822ndash82318 See eg Inquest into the Death of Jaxon McGrorey-Smith New South Wales State Coronerrsquos Court 14 November 2018 Inquest into the Death of Mrs June Woo Queensland Office of State Coroner 1 June 2009

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 417

minimum standard set by law to promote better more ethical decision-making19 Finally medical futility policies can also play an important role in fostering access to justice and transparent decision-making which includes informing actors about dispute resolution options both inside and outside of the health service20 However whether Australian medical futility policies have the potential to fulfil any of these regulatory functions depends on their content and scope21 This issue is the focus of this article

In contrast to the United States and Europe where a significant medical futility policy released in 2015 has generated extensive commentary22 there has been very little research on Australian medical futility policies23 This study seeks to fill this gap by critically reviewing publicly available Australian policies that are intended to guide doctorsrsquo behaviour when making decisions about withholding or withdrawing life-sustaining treatment from adult patients The article first sets out the conceptual challenges with futility and outlines the approach adopted by the recent international statement mentioned above24 as a comparator to the Australian context The article then describes the qualitative document analysis methodology used to collect categorise and analyse all of the publicly available medical policies guidelines and frameworks that are intended to guide doctorsrsquo decisions to forgo life-sustaining treatment The remainder of the article presents the results of the analysis and discusses gaps and opportunities in the Australian medical futility policy environment The article concludes by arguing that Australia would benefit from a more uniform approach to futility that gives clear guidance to doctors about terminology and how to prevent and address disputes

II THE ROLE OF MEDICAL FUTILITY

The concept of medical futility dates back to Hippocrates who instructed doctors ldquoto refuse to treat those who are lsquoovermasteredrsquo by their diseases realising that in such cases medicine is powerlessrdquo25 The modern interest in futility arose much more recently in the late 1980s and early 1990s26 Advances in medical technology including the proliferation of the intensive care unit (ICU) expanded doctorsrsquo ability to sustain the lives of critically ill patients As medical technology developed there was increasing awareness of the need to limit excessive treatment provided by overzealous doctors to patients who

19 See generally Parker and Braithwaite n 15 123 There are also instances where the law is more demanding than ethical standards or professional guidelines For further discussion see E Jackson ldquoThe Relationship between Medical Law and Good Medical Ethicsrdquo (2015) 41 J Med Ethics 9520 A significant power imbalance can exist between patients (and their substitute decision makers) and other actors in the health care system which can be compounded by differences in culture religion and socio-economic resources See K Curnow ldquoEnd-of-Life Decision-making in a Health Services Setting An Access to Justice Lensrdquo (2016) 23(4) JLM 886 Social injustice can also be perpetuated by bias (often implicit) and discrimination see J Kirby ldquoBalancing Legitimate Critical-care Interests Setting Defensible Care Limits through Policy Developmentrdquo (2016) 16(1) Am J Bioethics 38 4121 It also depends on whether policies are promulgated and have sufficient normative force which some studies have questioned See eg D Goodridge ldquoEnd of Life Care Policies Do They Make a Difference in Practicerdquo (2010) 70(8) Soc Sci Med 116622 GT Bosslet et al ldquoAn Official ATSAACNACCPESICMSCCM Policy Statement Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Unitsrdquo (2015) 191(11) Am J Respir Crit Care Med 1318 This policy was debated in a special edition see M Montello ldquoIntroduction to the Special Issuerdquo (2018) 60(3) Perspect Biol Med 29323 D Martin ldquoMedical Futility in Australiardquo in A Bagheri (ed) Medical Futility A Cross-national Study (Imperial College Press 2013) 119 M Levinson et al ldquoComparison of Not for Resuscitation (NFR) Forms across Five Victorian Health Servicesrdquo (2014) 44(7) Int Med J 671 AC Mills et al ldquoTesting a New Form to Document lsquoGoals-of-Carersquo Discussions Regarding Plans for End-of-Life Care for Patients in an Australian Emergency Departmentrdquo (2018) 30(6) Emerg Med Australas 777 For an Australian review of paediatric policies see N Bhatia and J Tibballs ldquoDeficiencies and Missed Opportunities to Formulate Clinical Guidelines in Australia for Withholding or Withdrawing Life-sustaining Treatment in Severely Disabled and Impaired Infantsrdquo (2015) 12(3) J Bioeth Inq 44924 Bosslet et al n 2225 I Kerridge M Lowe and C Stewart Ethics and Law for the Health Professions (Federation Press 4th ed 2013) 40926 PR Helft M Siegler and J Lantos ldquoThe Rise and Fall of the Futility Movementrdquo (2000) 343(4) N Engl J Med 293 DJC Wilkinson and J Savulescu ldquoKnowing When to Stop Futility in the ICUrdquo (2011) 24(2) Curr Opin Anaesthesiol 160 B White et al ldquoWithholding and Withdrawing Potentially Life-sustaining Treatment Who Should Deciderdquo in I Freckelton and K Petersen (eds) Tensions and Traumas in Health Law (Federation Press 2017) 454 458ndash462

Close Parker Willmott White and Crowden

418 (2019) 27 JLM 415

were extremely unlikely or unable to recover27 At the same time a normative shift away from medical paternalism towards shared decision-making meant futility was also used to combat demands for excessive treatment from patients or their substitute decision-makers28 The central premise was that if treatment was ldquofutilerdquo that is unlikely to sufficiently benefit the patient then doctors were under no legal or ethical obligation to provide it In this sense ldquofutilerdquo is not merely descriptive but rather an indication of the doctorrsquos obligations Engelhardt and Kushf explain ldquo[t]o describe a situation as futile is to determine that it does not merit a particular interventionrdquo29

In 1992 Truog Brett and Frader described the concept of futility as one of the ldquonewest additions to the lexicon of bioethicsrdquo30 While nearly a decade later Helft Siegler and Lantos maintained that interest in the topic had waned31 persistent attention remains32 and empirical studies demonstrate that doctors are familiar with the term and use it in practice33 However there has been no consensus in the medical or ethical literature about what futility means or about empirical markers to delineate it34 Different definitions proposed include

bull Physiological futility ndash Treatment that has no physiologic effect (eg antibiotics for a virus or cardiopulmonary resuscitation for a patient who is in rigor mortis)35

bull Quantitative futility ndash Treatment that has a very low chance of conferring a benefit for example in less than 1 in 100 cases36

bull Qualitative futility ndash Treatment that fails to result in an acceptable quality of life37 or achieving an effect that the patient can appreciate as a benefit38

bull Imminent demise futility ndash Treatment that might confer some physiologic effect but cannot halt impending death39

bull Lethal condition futility ndash Treatment that will address a symptom but will not change the progress of an underlying lethal condition40

The Oxford English Dictionary defines ldquofutilerdquo as ldquo[i]ncapable of producing any result failing utterly of the desired end through intrinsic defect useless ineffectual vainrdquo41 In contrast the definitions above (with the exception of physiological futility) demonstrate that the concept is used to denote treatment beyond that which is strictly incapable of having an effect On this basis many commentators are critical of futility as a concept justifying a unilateral medical determination because in most circumstances assessing whether or not to withhold or withdraw life-sustaining treatment is a subjective exercise that

27 BA Brody and A Halevy ldquoIs Futility a Futile Conceptrdquo (1995) 20(2) J Med Philos 12328 Helft Siegler and Lantos n 26 294 Wilkinson and Savulescu n 26 161 White et al n 26 459ndash46229 HT Engelhardt and G Khushf ldquoFutile Care for the Critically Ill Patientrdquo (1995) 1(4) Curr Opin Crit Care 329 330 See also GT Bosslet B Lo and DB White ldquoResolving Family-clinician Disputes in the Context of Contested Definitions of Futilityrdquo (2018) 60(3) Perspect Biol Med 31430 RD Truog AS Brett and J Frader ldquoThe Problem with Futilityrdquo (1992) 326(23) N Engl J Med 1560 156031 Helft Siegler and Lantos n 2632 White et al n 26 459ndash46233 See eg B White et al ldquoWhat Does lsquoFutilityrsquo Mean An Empirical Study of Doctorsrsquo Perceptionsrdquo (2016) 204(8) Med J Aus 318 R Sibbald J Downar and L Hawryluck ldquoPerceptions of lsquoFutile Carersquo among Caregivers in Intensive Care Unitsrdquo (2007) 177(10) CMAJ 120134 Helft Siegler and Lantos n 26 Wilkinson and Savulescu n 2635 Brody and Halevy n 27 Bosslet et al n 2236 LJ Schneiderman NS Jecker and AR Jonsen ldquoMedical Futility Its Meaning and Ethical Implicationsrdquo (1990) 112(12) Ann Intern Med 94937 Brody and Halevy n 2738 LJ Schneiderman ldquoDefining Medical Futility and Improving Medical Carerdquo (2011) 8(2) J Bioeth Inq 12339 Brody and Halevy n 2740 Brody and Halevy n 2741 OED Online futile adj (OUP September 2019 subscription service) lthttpswwwoedcomgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 419

depends on a patientrsquos values and on the goals of treatment42 For example a patient who is in a persistent vegetative state might have previously expressed strong views that life was worth prolonging no matter her condition and so not regard continued treatment as futile By contrast this treatment could be considered futile by another person who believed that such a life was not worth living

The criticism that futility is a flawed concept has prompted two key responses The first is a semantic shift away from the determinate-sounding ldquofutilityrdquo towards terms that are either more neutral (eg ldquonon-beneficial treatmentrdquo43) or terms that are more explicitly subjective (ie ldquopotentially inappropriate treatmentrdquo44 or ldquodisputed treatmentrdquo45) Indeed although futility still appears in many of the policies considered in this article academic literature increasingly adopts these other terms in particular ldquonon-beneficial treatmentrdquo46 In this article these terms will be used interchangeably but reflecting the terminology of the policies being analysed ldquofutile treatmentrdquo or ldquofutilityrdquo is predominantly used

The second response is to advocate for a ldquoprocedural approachrdquo to decisions47 A procedural approach is directed at establishing fair and transparent processes to arrive at a shared decision or to resolve disputes In Texas this is a binding process set out in legislation48 More commonly procedural approaches are laid out in policies set by hospitals governments or other professional bodies such as medical associations49 A procedural approach typically includes avenues for appeal and review such as obtaining a second opinion review by a hospital ethics committee transfer to another medical practitioner or institution and advising patients or substitute decision-makers of their right to access the courts50

III A KEY INTERNATIONAL APPROACH

As mentioned in the Introduction a number of international critical care organisations produced a significant medical futility policy in 2015 commonly referred to as the ldquoMulti-Society Statementrdquo51 Led by the American Thoracic Society (ATS) part of the impetus for the Multi-Society Statement was that existing professional statements on managing end-of-life conflict differed considerably in their definition of ldquofutilityrdquo and recommendations for management The Statement notes ldquo[c]onflicting guidance from professional societies is problematic because it may exacerbate confusion about this topic among clinicians and policymakersrdquo52 Recognising that these are complex decisions that warrant clear guidance for clinicians the ATS assembled a working group of several medical societies53 to develop a

42 See eg Bosslet et al n 22 Helft Siegler and Lantos n 26 Empirical studies have also confirmed doctors perceive futility is often subjective favouring a qualitative approach See eg White et al n 33 E Close et al ldquoDoctorsrsquo Perceptions of How Resource Limitations Relate to Futility in End-of-Life Decision Making A Qualitative Analysisrdquo (2019) 45(6) J Med Ethics 37343 JL Nates et al ldquoICU Admission Discharge and Triage Guidelines A Framework to Enhance Clinical Operations Development of Institutional Policies and Further Researchrdquo (2016) 44(8) Crit Care Med 1553 AS Brett and LB McCullough ldquoGetting Past Words Futility and the Professional Ethics of Life-sustaining Treatmentrdquo (2018) 60(3) Perspect Biol Med 31944 Bosslet et al n 2245 B White L Willmott and E Close ldquoFutile Non-beneficial Potentially Inappropriate or lsquoDisputedrsquo Treatmentrdquo in N Emmerich et al (eds) Contemporary European Perspectives on the Ethics of End of Life Care (Springer 2020)46 See eg Nates et al n 43 J Downar et al ldquoNonbeneficial Treatment Canada Definitions Causes and Potential Solutions from the Perspective of Healthcare Practitionersrdquo (2015) 43(2) Crit Care Med 270 M Cardona-Morrell et al ldquoNon-beneficial Treatments in Hospital at the End of Life A Systematic Review on Extent of the Problemrdquo (2016) 28(4) Int J Qual Health Care 147 Bosslet et al n 26 S Moratti ldquoThe Development of lsquoMedical Futilityrsquo Towards a Procedural Approach Based on the Role of the Medical Professionrdquo (2009) 35(6) J Med Ethics 369 C Stewart ldquoFutility Determination as a Process Problems with Medical Sovereignty Legal Issues and the Strengths and Weakness of the Procedural Approachrdquo (2011) 8(2) J Bioeth Inq 15548 Advance Directives Act Texas Health and Safety Code sectsect166001ndash166166 (1999)49 D White and T Pope ldquoMedical Futility and Potentially Inappropriate Treatmentrdquo in SJ Younger and RM Arnold (eds) The Oxford Handbook of Ethics at the End of Life (OUP 2018)50 Stewart n 47 White and Pope n 4951 Bosslet et al n 2252 Bosslet et al n 22 132053 The policy was issued by the American Thoracic Society and approved by the American Association of Critical Care Nurses (ACCN) the American College of Chest Physicians (ACCP) the European Society for Intensive Care Medicine (ESICM) and the Society of Critical Care Medicine (SCCM) See Bosslet et al n 22

Close Parker Willmott White and Crowden

420 (2019) 27 JLM 415

framework for decision-making and provide recommendations for preventing and addressing disputes This policy is a useful benchmark for an Australian analysis as it illustrates these two trends discussed in the preceding section changes in terminology and a procedural approach to decisions

The most significant recommendation in the Multi-Society Statement is to narrow the scope of ldquomedical futilityrdquo by drawing a distinction between treatments that are ldquofutilerdquo (which ldquocannot accomplish the intended physiological goalrdquo) and those that are ldquopotentially inappropriaterdquo (which ldquohave at least some chance of accomplishing the effect sought by the patient but clinicians believe that competing ethical considerations justify not providing themrdquo)54 The policy sets out clear procedures for each category of treatment This approach recognises that the majority of decisions about life-sustaining treatment involve potentially inappropriate treatment (warranting a process of negotiation with patients or their substitute decision-makers) not treatment that is physiologically futile (which doctors rightly should unilaterally refuse to provide) While this policy has critics55 in our view Pope rightly argues that by narrowing the scope of the term ldquomedical futilityrdquo the statement ldquooffers a richer and more precise vocabulary that facilitates better ethical decision-makingrdquo56 As such it is an important reference point for critical analyses of policy work on this topic Therefore with this key international comparator in mind the remainder of this article will evaluate the extent to which Australian medical futility policies address both terminology and the decision-making process

IV METHODOLOGY

There is very little discourse about Australian medical policies on futility57 and to our knowledge no comprehensive audit exists of current policies about withholding and withdrawing life-sustaining treatment from adult patients We therefore set out to study Australian policies about foregoing life-sustaining treatment to determine what guidance about futility is provided to Australian doctors who make end-of-life decisions We aimed to identify existing policies on withholding and withdrawing life-sustaining treatment and critically examine the extent to which they address medical futility (or a similar concept) at the end of life and how it is labelled and conceptualised We also aimed to evaluate to what extent the policies provide guidance about the decision-making process including the scope of unilateral decision-making and how to resolve disputes

We adopted Altheidersquos five-stage document analysis method to address some of the challenges of complex health policy analysis58 This is a widely recognised qualitative document analysis method that Altheide et al describe as ldquoan integrated method procedure and technique for locating identifying retrieving and analysing documents for their relevance significance and meaningrdquo59 Altheide et alrsquos five stages are (1) document sampling (2) data collection (3) data coding and organisation (4) data analysis and (5) reporting

54 Bosslet et al n 22 1319 The Multi-Society Statement also discusses ldquolegally discretionary and legally proscribed treatmentsrdquo those governed or prohibited by specific laws policies or procedures55 See eg Schneiderman Jecker and Jonsen n 3656 TM Pope ldquoMedical Futility and Potentially Inappropriate Treatment Better Ethics with More Precise Definitions and Languagerdquo (2018) 60(3) Perspect Biol Med 423 Elsewhere several of the authors advocate for a process that distinguishes physiological futility from value-laden decisions See White et al n 26 476ndash478 White Willmott and Close n 4557 The few studies that exist are limited to institutional policies or do not purport to constitute a comprehensive review See eg Martin n 23 Levinson et al n 23 Mills et al n 2358 G Walt et al ldquolsquoDoingrsquo Health Policy Analysis Methodological and Conceptual Reflections and Challengesrdquo (2008) 23(5) Health Policy Plan 30859 D Altheide et al ldquoEmergent Qualitative Document Analysisrdquo in SN Hesse-Biber and P Leavy (eds) Handbook of Emergent Methods (Guildford Press 2010) 127 The method was pioneered in the 1990s in the context of sociological studies of mass media but has been used more widely since and was recently employed in a study on Australian health policy research A Esbati et al ldquoLegislation Policies and Guidelines Related to Breastfeeding and the Baby Friendly Health Initiative in Australia A Document Analysisrdquo (2018) 42(1) Aust Health Rev 72

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 421

A Stage 1 Document SamplingThis review targeted current publicly available medical policies in all Australian jurisdictions that address decisions to withhold or withdraw life-sustaining treatment We defined ldquopolicyrdquo broadly as a written statement of principle intended to guide doctorsrsquo decisions about clinicalethical aspects of withholding or withdrawing life-sustaining treatment60 Using this broad definition of ldquopolicyrdquo we included documents intended as mere guidance or information not just policies in a formal binding sense Documents meeting these criteria were primarily professional guidelines health department policies position statements ethical statements and frameworks but broader documents aimed at a wider audience including health consumers and medical administrators were included in the initial sampling if they purported to provide specific guidance for doctors We also examined relevant reports intended to inform policy development Overarching medical codes of ethics were included when they made specific statements about withholding or withdrawing life-sustaining treatment or about futility

We excluded institutional policies such as those from hospitals and aged care facilities since these are typically not publicly available61 Strategy documents targeted solely at stakeholders other than doctors and those focused on aspects of end-of-life care other than withholding and withdrawing life-sustaining treatment were excluded for example strategies on focused solely on palliative care62 and advance care directives63 We also excluded purely clinical guidelines directed to specific therapies such as Choosing Wisely Australia64 and organ allocation policies65 Legislation and training modules and education programs for doctors were also excluded as these are distinct from policies

B Stage 2 Data CollectionAs a starting point we identified the bodies that would be likely to have policy on end-of-life care including Australian peak medical bodies and medical colleges and national State and Territory governments AC did an initial review which EC revisited and updated in 201966 For the more recent review EC searched the relevant bodiesrsquo websites using a range of terms including ldquofutile treatmentrdquo ldquofutilityrdquo ldquonon-beneficial treatmentrdquo ldquoinappropriate treatmentrdquo ldquowithholdrdquo ldquowithdrawrdquo ldquotreatment limitationrdquo ldquoend of life and policy or guidelinerdquo ldquoresuscitationrdquo ldquogoals of carerdquo ldquodispute or conflictrdquo EC also examined the professional guidelines and resources sections of all 15 Australian specialist medical colleges67 and searched the health department websites for each Australian State and Territory

60 We developed this from the definition of ldquoinstitutional policyrdquo in Goodridge n 21 1166 ldquodeclarations of the organizationsrsquo deeply held values hellip instructing employees on how to conduct business in a legal ethical and safe mannerrdquo61 Survey methodology is usually required to locate institutional policies See eg J Lemiengre et al ldquoInstitutional Ethics Policies on Medical End-of-Life Decisions A Literature Reviewrdquo (2007) 83(2) Health Policy 13162 See eg Palliative Care Australia National Palliative Care Standards (5th ed 2018) lthttppalliativecareorgauwp-contentuploadsdlm_uploads201811PalliativeCare-National-Standards-2018_Nov-webpdfgt63 See eg The Clinical Technical and Ethical Principal Committee of the Australian Health Ministersrsquo Advisory Council A National Framework for Advance Care Directives (Australian Health Ministers Advisory Council 2011) lthttpwwwcoaghealthcouncilgovauPortals0A20National20Framework20for20Advance20Care20Directives_September202011pdfgt Queensland Government Department of Health Advance Care Planning Clinical Guidelines (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0037688618acp-guidelinespdfgt64 See eg Choosing Wisely Australia The Royal Australian College of General Practitioners Tests Treatments and Procedures Clinicians and Consumers Should Question (NPS MedicineWise 2015ndash2016) lthttpwwwchoosingwiselyorgaurecommendationsracgpgt65 See eg The Transplantation Society of Australia and New Zealand Clinical Guidelines for Organ Transplantation from Deceased Donors (2019) lthttpswwwtsanzcomauTSANZ_Clinical_Guidelines_Version2013[6986]pdfgt National Health and Medical Research Council Ethical Guidelines for Organ Transplantation from Deceased Donors (2016) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-organ-transplantation-deceased-donorsgt66 Results of the review are current as of 1 November 201967 Australian Health Practitioner Regulation Agency Approved Programs of Study (AHPRA amp National Boards) lthttpswwwahpragovaueducationapproved-programs-of-studyaspxref=medical20practitioneramptype=specialistgt The colleges are the Australasian College for Emergency Medicine (ACEM) the Australasian College of Dermatologists (ACD) the Australasian College of Sport and Exercise Physicians (ACSEP) the Australia and New Zealand College of Anaesthetists (ANZCA) the

Close Parker Willmott White and Crowden

422 (2019) 27 JLM 415

The above terms were also queried using the Google search engine and in MEDLINEPUBMED and Scopus academic databases in combination with the term ldquoAustraliardquo

C Stage 3 Data Coding and OrganisationBased on the initial searches EC created a database of documents that potentially met the inclusion criteria EC and MP reviewed and discussed all documents that did not clearly meet the inclusion criteria and arrived at a final list of policies to include in this review which all authors agreed on These were assigned to one of three groups

bull Category 1 Commonwealth government documentsbull Category 2 StateTerritory government documents andbull Category 3 Professional organisation documents

Documents were grouped into these categories to facilitate ease of comparison across documents by similar authors and to more easily identify which policies would apply to a given doctor in a specific specialty in a specific jurisdiction For example while the Category 1 policies would in theory apply to all doctors across Australia an intensive care doctor working in Queensland would be subject to only the Queensland documents from Category 2 and the relevant professional organisation documents in Category 3

D Stage 4 Data AnalysisOnce the list of policies was settled EC uploaded them into NVivo 12 (QSR International Pty Ltd 2018) and developed a list of initial codes which formed the basis for the protocol EC coded the policies by comparing and contrasting key differences between the policies and between the categories68 EC also developed Excel matrices to summarise the policies and facilitate comparisons of how futility was defined and guidance given about the decision-making process69

E Stage 5 ReportStage 5 of Altheidersquos method is synthesising and interpreting the results which is set out in the next two parts

V RESULTS

The results are grouped into three main themes (1) the scope and source of medical futility policies in Australia (2) terminology used to describe futility or a like concept and (3) the extent of guidance about the decision-making process and dispute resolution

A Scope and Source of Australian Medical Futility PoliciesAcross Australia we located 23 policies that met the inclusion criteria (Table 1) Ten policies were from State and Territory governments (Category 2) Another ten policies were from professional organisations (Category 3) with five of these from national medical associations and societies (Category 3a) and five from medical colleges (Category 3b) There were three relevant policies issued by the Commonwealth Government (Category 1)

Australian College of Rural and Remote Medicine (ACRRM) the College of Intensive Care Medicine of Australia and New Zealand (CICM) the Royal Australasian College of Medical Administrators (RACMA) the Royal Australasian College of Obstetricians amp Gynaecologists (RANZCOG) the Royal Australasian College of Physicians (RACP) the Royal Australasian College of Surgeons (RACS) the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) Royal Australian and New Zealand College of Psychiatrists (RANZCP) the Royal Australian and New Zealand College of Radiologists (RANZCR) the Royal Australian College of General Practitioners (RACGP) and the Royal College of Pathologists of Australia (RCPA)68 DL Altheide and CJ Schneider ldquoProcess of Qualitative Document Analysisrdquo in Qualitative Media Analysis (SAGE Publications 2nd ed 2013)69 M Miles M Huberman and J Saldantildea Qualitative Data Analysis A Methods Sourcebook (SAGE Publications 3rd ed 2014)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 423

TABLE 1 Current Australian Policies That Address Decision Making about Withholding or Withdrawing Life-sustaining Treatment andor Futile Treatment at the End of Life

Source Name of Document (Year) Brief Description

Category 1 ndash Commonwealth Government

Australian Commission on Safety and Quality in Health Care

National Consensus Statement Essential Elements for Safe and High-Quality End-of-Life Care (2015)A

40-page document setting out suggested practice for end-of-life care in acute settings including guiding principles and corresponding actions

Medical Board of Australia

Good Medical Practice A Code of Conduct for Doctors in Australia (2014)B

25-page code setting out the standards of professional and ethical conduct for all registered doctors in Australia Section 312 is dedicated to end-of-life care

National Health and Medical Research Council

Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)C

66-page ethical framework to guide decision-making for persons in post-coma unresponsiveness (PCU) or a minimally responsive state

Category 2 ndash State and Territory Governments

New South Wales Government Department of Health

End-of-Life Care and Decision-Making ndash Guidelines (2005)D

17-page document setting out a process for reaching end-of-life decisions Includes principles and recommendations for shared decision-making

Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010)E

56-page report providing recommendations for how to navigate end-of-life conflicts in the hospital setting

Using Resuscitation Plans in End of Life Decisions (2014)F

21-page policy directive describing the standards and principles for the use of resuscitation plans (orders to use or withhold resuscitation measures) in patients 29 days and older

Queensland Government Department of Health

End-of-Life Care Guidelines for Decision-Making About Withholding and Withdrawing Life-Sustaining Measures from Adult Patients (2018)G

176-page reference document intended to support health professionals administrators policy-makers decision-managers who are involved in decision-making about life-sustaining measures

South Australia Government Department of Health

Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (2014)H

33-page policy directive directed at assisting health professionals to meet their legal obligations when providing medical assessment or treatment to patients who cannot consent due to a lack of voluntariness communication difficulties or impaired decision-making capacity

Consent to Medical Treatment and Health Care Policy Guideline (2014)I

39-page policy guideline aimed at providing guidance in meeting legislative requirements under guardianship and health care consent legislation including avenues for dispute resolution

Resuscitation Planning ndash 7 Step Pathway (2016)J

25-page policy directive aimed at health professionals and consumers that sets out a transparent process to make and document decisions about resuscitation and other life-sustaining treatments

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 4: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 417

minimum standard set by law to promote better more ethical decision-making19 Finally medical futility policies can also play an important role in fostering access to justice and transparent decision-making which includes informing actors about dispute resolution options both inside and outside of the health service20 However whether Australian medical futility policies have the potential to fulfil any of these regulatory functions depends on their content and scope21 This issue is the focus of this article

In contrast to the United States and Europe where a significant medical futility policy released in 2015 has generated extensive commentary22 there has been very little research on Australian medical futility policies23 This study seeks to fill this gap by critically reviewing publicly available Australian policies that are intended to guide doctorsrsquo behaviour when making decisions about withholding or withdrawing life-sustaining treatment from adult patients The article first sets out the conceptual challenges with futility and outlines the approach adopted by the recent international statement mentioned above24 as a comparator to the Australian context The article then describes the qualitative document analysis methodology used to collect categorise and analyse all of the publicly available medical policies guidelines and frameworks that are intended to guide doctorsrsquo decisions to forgo life-sustaining treatment The remainder of the article presents the results of the analysis and discusses gaps and opportunities in the Australian medical futility policy environment The article concludes by arguing that Australia would benefit from a more uniform approach to futility that gives clear guidance to doctors about terminology and how to prevent and address disputes

II THE ROLE OF MEDICAL FUTILITY

The concept of medical futility dates back to Hippocrates who instructed doctors ldquoto refuse to treat those who are lsquoovermasteredrsquo by their diseases realising that in such cases medicine is powerlessrdquo25 The modern interest in futility arose much more recently in the late 1980s and early 1990s26 Advances in medical technology including the proliferation of the intensive care unit (ICU) expanded doctorsrsquo ability to sustain the lives of critically ill patients As medical technology developed there was increasing awareness of the need to limit excessive treatment provided by overzealous doctors to patients who

19 See generally Parker and Braithwaite n 15 123 There are also instances where the law is more demanding than ethical standards or professional guidelines For further discussion see E Jackson ldquoThe Relationship between Medical Law and Good Medical Ethicsrdquo (2015) 41 J Med Ethics 9520 A significant power imbalance can exist between patients (and their substitute decision makers) and other actors in the health care system which can be compounded by differences in culture religion and socio-economic resources See K Curnow ldquoEnd-of-Life Decision-making in a Health Services Setting An Access to Justice Lensrdquo (2016) 23(4) JLM 886 Social injustice can also be perpetuated by bias (often implicit) and discrimination see J Kirby ldquoBalancing Legitimate Critical-care Interests Setting Defensible Care Limits through Policy Developmentrdquo (2016) 16(1) Am J Bioethics 38 4121 It also depends on whether policies are promulgated and have sufficient normative force which some studies have questioned See eg D Goodridge ldquoEnd of Life Care Policies Do They Make a Difference in Practicerdquo (2010) 70(8) Soc Sci Med 116622 GT Bosslet et al ldquoAn Official ATSAACNACCPESICMSCCM Policy Statement Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Unitsrdquo (2015) 191(11) Am J Respir Crit Care Med 1318 This policy was debated in a special edition see M Montello ldquoIntroduction to the Special Issuerdquo (2018) 60(3) Perspect Biol Med 29323 D Martin ldquoMedical Futility in Australiardquo in A Bagheri (ed) Medical Futility A Cross-national Study (Imperial College Press 2013) 119 M Levinson et al ldquoComparison of Not for Resuscitation (NFR) Forms across Five Victorian Health Servicesrdquo (2014) 44(7) Int Med J 671 AC Mills et al ldquoTesting a New Form to Document lsquoGoals-of-Carersquo Discussions Regarding Plans for End-of-Life Care for Patients in an Australian Emergency Departmentrdquo (2018) 30(6) Emerg Med Australas 777 For an Australian review of paediatric policies see N Bhatia and J Tibballs ldquoDeficiencies and Missed Opportunities to Formulate Clinical Guidelines in Australia for Withholding or Withdrawing Life-sustaining Treatment in Severely Disabled and Impaired Infantsrdquo (2015) 12(3) J Bioeth Inq 44924 Bosslet et al n 2225 I Kerridge M Lowe and C Stewart Ethics and Law for the Health Professions (Federation Press 4th ed 2013) 40926 PR Helft M Siegler and J Lantos ldquoThe Rise and Fall of the Futility Movementrdquo (2000) 343(4) N Engl J Med 293 DJC Wilkinson and J Savulescu ldquoKnowing When to Stop Futility in the ICUrdquo (2011) 24(2) Curr Opin Anaesthesiol 160 B White et al ldquoWithholding and Withdrawing Potentially Life-sustaining Treatment Who Should Deciderdquo in I Freckelton and K Petersen (eds) Tensions and Traumas in Health Law (Federation Press 2017) 454 458ndash462

Close Parker Willmott White and Crowden

418 (2019) 27 JLM 415

were extremely unlikely or unable to recover27 At the same time a normative shift away from medical paternalism towards shared decision-making meant futility was also used to combat demands for excessive treatment from patients or their substitute decision-makers28 The central premise was that if treatment was ldquofutilerdquo that is unlikely to sufficiently benefit the patient then doctors were under no legal or ethical obligation to provide it In this sense ldquofutilerdquo is not merely descriptive but rather an indication of the doctorrsquos obligations Engelhardt and Kushf explain ldquo[t]o describe a situation as futile is to determine that it does not merit a particular interventionrdquo29

In 1992 Truog Brett and Frader described the concept of futility as one of the ldquonewest additions to the lexicon of bioethicsrdquo30 While nearly a decade later Helft Siegler and Lantos maintained that interest in the topic had waned31 persistent attention remains32 and empirical studies demonstrate that doctors are familiar with the term and use it in practice33 However there has been no consensus in the medical or ethical literature about what futility means or about empirical markers to delineate it34 Different definitions proposed include

bull Physiological futility ndash Treatment that has no physiologic effect (eg antibiotics for a virus or cardiopulmonary resuscitation for a patient who is in rigor mortis)35

bull Quantitative futility ndash Treatment that has a very low chance of conferring a benefit for example in less than 1 in 100 cases36

bull Qualitative futility ndash Treatment that fails to result in an acceptable quality of life37 or achieving an effect that the patient can appreciate as a benefit38

bull Imminent demise futility ndash Treatment that might confer some physiologic effect but cannot halt impending death39

bull Lethal condition futility ndash Treatment that will address a symptom but will not change the progress of an underlying lethal condition40

The Oxford English Dictionary defines ldquofutilerdquo as ldquo[i]ncapable of producing any result failing utterly of the desired end through intrinsic defect useless ineffectual vainrdquo41 In contrast the definitions above (with the exception of physiological futility) demonstrate that the concept is used to denote treatment beyond that which is strictly incapable of having an effect On this basis many commentators are critical of futility as a concept justifying a unilateral medical determination because in most circumstances assessing whether or not to withhold or withdraw life-sustaining treatment is a subjective exercise that

27 BA Brody and A Halevy ldquoIs Futility a Futile Conceptrdquo (1995) 20(2) J Med Philos 12328 Helft Siegler and Lantos n 26 294 Wilkinson and Savulescu n 26 161 White et al n 26 459ndash46229 HT Engelhardt and G Khushf ldquoFutile Care for the Critically Ill Patientrdquo (1995) 1(4) Curr Opin Crit Care 329 330 See also GT Bosslet B Lo and DB White ldquoResolving Family-clinician Disputes in the Context of Contested Definitions of Futilityrdquo (2018) 60(3) Perspect Biol Med 31430 RD Truog AS Brett and J Frader ldquoThe Problem with Futilityrdquo (1992) 326(23) N Engl J Med 1560 156031 Helft Siegler and Lantos n 2632 White et al n 26 459ndash46233 See eg B White et al ldquoWhat Does lsquoFutilityrsquo Mean An Empirical Study of Doctorsrsquo Perceptionsrdquo (2016) 204(8) Med J Aus 318 R Sibbald J Downar and L Hawryluck ldquoPerceptions of lsquoFutile Carersquo among Caregivers in Intensive Care Unitsrdquo (2007) 177(10) CMAJ 120134 Helft Siegler and Lantos n 26 Wilkinson and Savulescu n 2635 Brody and Halevy n 27 Bosslet et al n 2236 LJ Schneiderman NS Jecker and AR Jonsen ldquoMedical Futility Its Meaning and Ethical Implicationsrdquo (1990) 112(12) Ann Intern Med 94937 Brody and Halevy n 2738 LJ Schneiderman ldquoDefining Medical Futility and Improving Medical Carerdquo (2011) 8(2) J Bioeth Inq 12339 Brody and Halevy n 2740 Brody and Halevy n 2741 OED Online futile adj (OUP September 2019 subscription service) lthttpswwwoedcomgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 419

depends on a patientrsquos values and on the goals of treatment42 For example a patient who is in a persistent vegetative state might have previously expressed strong views that life was worth prolonging no matter her condition and so not regard continued treatment as futile By contrast this treatment could be considered futile by another person who believed that such a life was not worth living

The criticism that futility is a flawed concept has prompted two key responses The first is a semantic shift away from the determinate-sounding ldquofutilityrdquo towards terms that are either more neutral (eg ldquonon-beneficial treatmentrdquo43) or terms that are more explicitly subjective (ie ldquopotentially inappropriate treatmentrdquo44 or ldquodisputed treatmentrdquo45) Indeed although futility still appears in many of the policies considered in this article academic literature increasingly adopts these other terms in particular ldquonon-beneficial treatmentrdquo46 In this article these terms will be used interchangeably but reflecting the terminology of the policies being analysed ldquofutile treatmentrdquo or ldquofutilityrdquo is predominantly used

The second response is to advocate for a ldquoprocedural approachrdquo to decisions47 A procedural approach is directed at establishing fair and transparent processes to arrive at a shared decision or to resolve disputes In Texas this is a binding process set out in legislation48 More commonly procedural approaches are laid out in policies set by hospitals governments or other professional bodies such as medical associations49 A procedural approach typically includes avenues for appeal and review such as obtaining a second opinion review by a hospital ethics committee transfer to another medical practitioner or institution and advising patients or substitute decision-makers of their right to access the courts50

III A KEY INTERNATIONAL APPROACH

As mentioned in the Introduction a number of international critical care organisations produced a significant medical futility policy in 2015 commonly referred to as the ldquoMulti-Society Statementrdquo51 Led by the American Thoracic Society (ATS) part of the impetus for the Multi-Society Statement was that existing professional statements on managing end-of-life conflict differed considerably in their definition of ldquofutilityrdquo and recommendations for management The Statement notes ldquo[c]onflicting guidance from professional societies is problematic because it may exacerbate confusion about this topic among clinicians and policymakersrdquo52 Recognising that these are complex decisions that warrant clear guidance for clinicians the ATS assembled a working group of several medical societies53 to develop a

42 See eg Bosslet et al n 22 Helft Siegler and Lantos n 26 Empirical studies have also confirmed doctors perceive futility is often subjective favouring a qualitative approach See eg White et al n 33 E Close et al ldquoDoctorsrsquo Perceptions of How Resource Limitations Relate to Futility in End-of-Life Decision Making A Qualitative Analysisrdquo (2019) 45(6) J Med Ethics 37343 JL Nates et al ldquoICU Admission Discharge and Triage Guidelines A Framework to Enhance Clinical Operations Development of Institutional Policies and Further Researchrdquo (2016) 44(8) Crit Care Med 1553 AS Brett and LB McCullough ldquoGetting Past Words Futility and the Professional Ethics of Life-sustaining Treatmentrdquo (2018) 60(3) Perspect Biol Med 31944 Bosslet et al n 2245 B White L Willmott and E Close ldquoFutile Non-beneficial Potentially Inappropriate or lsquoDisputedrsquo Treatmentrdquo in N Emmerich et al (eds) Contemporary European Perspectives on the Ethics of End of Life Care (Springer 2020)46 See eg Nates et al n 43 J Downar et al ldquoNonbeneficial Treatment Canada Definitions Causes and Potential Solutions from the Perspective of Healthcare Practitionersrdquo (2015) 43(2) Crit Care Med 270 M Cardona-Morrell et al ldquoNon-beneficial Treatments in Hospital at the End of Life A Systematic Review on Extent of the Problemrdquo (2016) 28(4) Int J Qual Health Care 147 Bosslet et al n 26 S Moratti ldquoThe Development of lsquoMedical Futilityrsquo Towards a Procedural Approach Based on the Role of the Medical Professionrdquo (2009) 35(6) J Med Ethics 369 C Stewart ldquoFutility Determination as a Process Problems with Medical Sovereignty Legal Issues and the Strengths and Weakness of the Procedural Approachrdquo (2011) 8(2) J Bioeth Inq 15548 Advance Directives Act Texas Health and Safety Code sectsect166001ndash166166 (1999)49 D White and T Pope ldquoMedical Futility and Potentially Inappropriate Treatmentrdquo in SJ Younger and RM Arnold (eds) The Oxford Handbook of Ethics at the End of Life (OUP 2018)50 Stewart n 47 White and Pope n 4951 Bosslet et al n 2252 Bosslet et al n 22 132053 The policy was issued by the American Thoracic Society and approved by the American Association of Critical Care Nurses (ACCN) the American College of Chest Physicians (ACCP) the European Society for Intensive Care Medicine (ESICM) and the Society of Critical Care Medicine (SCCM) See Bosslet et al n 22

Close Parker Willmott White and Crowden

420 (2019) 27 JLM 415

framework for decision-making and provide recommendations for preventing and addressing disputes This policy is a useful benchmark for an Australian analysis as it illustrates these two trends discussed in the preceding section changes in terminology and a procedural approach to decisions

The most significant recommendation in the Multi-Society Statement is to narrow the scope of ldquomedical futilityrdquo by drawing a distinction between treatments that are ldquofutilerdquo (which ldquocannot accomplish the intended physiological goalrdquo) and those that are ldquopotentially inappropriaterdquo (which ldquohave at least some chance of accomplishing the effect sought by the patient but clinicians believe that competing ethical considerations justify not providing themrdquo)54 The policy sets out clear procedures for each category of treatment This approach recognises that the majority of decisions about life-sustaining treatment involve potentially inappropriate treatment (warranting a process of negotiation with patients or their substitute decision-makers) not treatment that is physiologically futile (which doctors rightly should unilaterally refuse to provide) While this policy has critics55 in our view Pope rightly argues that by narrowing the scope of the term ldquomedical futilityrdquo the statement ldquooffers a richer and more precise vocabulary that facilitates better ethical decision-makingrdquo56 As such it is an important reference point for critical analyses of policy work on this topic Therefore with this key international comparator in mind the remainder of this article will evaluate the extent to which Australian medical futility policies address both terminology and the decision-making process

IV METHODOLOGY

There is very little discourse about Australian medical policies on futility57 and to our knowledge no comprehensive audit exists of current policies about withholding and withdrawing life-sustaining treatment from adult patients We therefore set out to study Australian policies about foregoing life-sustaining treatment to determine what guidance about futility is provided to Australian doctors who make end-of-life decisions We aimed to identify existing policies on withholding and withdrawing life-sustaining treatment and critically examine the extent to which they address medical futility (or a similar concept) at the end of life and how it is labelled and conceptualised We also aimed to evaluate to what extent the policies provide guidance about the decision-making process including the scope of unilateral decision-making and how to resolve disputes

We adopted Altheidersquos five-stage document analysis method to address some of the challenges of complex health policy analysis58 This is a widely recognised qualitative document analysis method that Altheide et al describe as ldquoan integrated method procedure and technique for locating identifying retrieving and analysing documents for their relevance significance and meaningrdquo59 Altheide et alrsquos five stages are (1) document sampling (2) data collection (3) data coding and organisation (4) data analysis and (5) reporting

54 Bosslet et al n 22 1319 The Multi-Society Statement also discusses ldquolegally discretionary and legally proscribed treatmentsrdquo those governed or prohibited by specific laws policies or procedures55 See eg Schneiderman Jecker and Jonsen n 3656 TM Pope ldquoMedical Futility and Potentially Inappropriate Treatment Better Ethics with More Precise Definitions and Languagerdquo (2018) 60(3) Perspect Biol Med 423 Elsewhere several of the authors advocate for a process that distinguishes physiological futility from value-laden decisions See White et al n 26 476ndash478 White Willmott and Close n 4557 The few studies that exist are limited to institutional policies or do not purport to constitute a comprehensive review See eg Martin n 23 Levinson et al n 23 Mills et al n 2358 G Walt et al ldquolsquoDoingrsquo Health Policy Analysis Methodological and Conceptual Reflections and Challengesrdquo (2008) 23(5) Health Policy Plan 30859 D Altheide et al ldquoEmergent Qualitative Document Analysisrdquo in SN Hesse-Biber and P Leavy (eds) Handbook of Emergent Methods (Guildford Press 2010) 127 The method was pioneered in the 1990s in the context of sociological studies of mass media but has been used more widely since and was recently employed in a study on Australian health policy research A Esbati et al ldquoLegislation Policies and Guidelines Related to Breastfeeding and the Baby Friendly Health Initiative in Australia A Document Analysisrdquo (2018) 42(1) Aust Health Rev 72

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 421

A Stage 1 Document SamplingThis review targeted current publicly available medical policies in all Australian jurisdictions that address decisions to withhold or withdraw life-sustaining treatment We defined ldquopolicyrdquo broadly as a written statement of principle intended to guide doctorsrsquo decisions about clinicalethical aspects of withholding or withdrawing life-sustaining treatment60 Using this broad definition of ldquopolicyrdquo we included documents intended as mere guidance or information not just policies in a formal binding sense Documents meeting these criteria were primarily professional guidelines health department policies position statements ethical statements and frameworks but broader documents aimed at a wider audience including health consumers and medical administrators were included in the initial sampling if they purported to provide specific guidance for doctors We also examined relevant reports intended to inform policy development Overarching medical codes of ethics were included when they made specific statements about withholding or withdrawing life-sustaining treatment or about futility

We excluded institutional policies such as those from hospitals and aged care facilities since these are typically not publicly available61 Strategy documents targeted solely at stakeholders other than doctors and those focused on aspects of end-of-life care other than withholding and withdrawing life-sustaining treatment were excluded for example strategies on focused solely on palliative care62 and advance care directives63 We also excluded purely clinical guidelines directed to specific therapies such as Choosing Wisely Australia64 and organ allocation policies65 Legislation and training modules and education programs for doctors were also excluded as these are distinct from policies

B Stage 2 Data CollectionAs a starting point we identified the bodies that would be likely to have policy on end-of-life care including Australian peak medical bodies and medical colleges and national State and Territory governments AC did an initial review which EC revisited and updated in 201966 For the more recent review EC searched the relevant bodiesrsquo websites using a range of terms including ldquofutile treatmentrdquo ldquofutilityrdquo ldquonon-beneficial treatmentrdquo ldquoinappropriate treatmentrdquo ldquowithholdrdquo ldquowithdrawrdquo ldquotreatment limitationrdquo ldquoend of life and policy or guidelinerdquo ldquoresuscitationrdquo ldquogoals of carerdquo ldquodispute or conflictrdquo EC also examined the professional guidelines and resources sections of all 15 Australian specialist medical colleges67 and searched the health department websites for each Australian State and Territory

60 We developed this from the definition of ldquoinstitutional policyrdquo in Goodridge n 21 1166 ldquodeclarations of the organizationsrsquo deeply held values hellip instructing employees on how to conduct business in a legal ethical and safe mannerrdquo61 Survey methodology is usually required to locate institutional policies See eg J Lemiengre et al ldquoInstitutional Ethics Policies on Medical End-of-Life Decisions A Literature Reviewrdquo (2007) 83(2) Health Policy 13162 See eg Palliative Care Australia National Palliative Care Standards (5th ed 2018) lthttppalliativecareorgauwp-contentuploadsdlm_uploads201811PalliativeCare-National-Standards-2018_Nov-webpdfgt63 See eg The Clinical Technical and Ethical Principal Committee of the Australian Health Ministersrsquo Advisory Council A National Framework for Advance Care Directives (Australian Health Ministers Advisory Council 2011) lthttpwwwcoaghealthcouncilgovauPortals0A20National20Framework20for20Advance20Care20Directives_September202011pdfgt Queensland Government Department of Health Advance Care Planning Clinical Guidelines (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0037688618acp-guidelinespdfgt64 See eg Choosing Wisely Australia The Royal Australian College of General Practitioners Tests Treatments and Procedures Clinicians and Consumers Should Question (NPS MedicineWise 2015ndash2016) lthttpwwwchoosingwiselyorgaurecommendationsracgpgt65 See eg The Transplantation Society of Australia and New Zealand Clinical Guidelines for Organ Transplantation from Deceased Donors (2019) lthttpswwwtsanzcomauTSANZ_Clinical_Guidelines_Version2013[6986]pdfgt National Health and Medical Research Council Ethical Guidelines for Organ Transplantation from Deceased Donors (2016) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-organ-transplantation-deceased-donorsgt66 Results of the review are current as of 1 November 201967 Australian Health Practitioner Regulation Agency Approved Programs of Study (AHPRA amp National Boards) lthttpswwwahpragovaueducationapproved-programs-of-studyaspxref=medical20practitioneramptype=specialistgt The colleges are the Australasian College for Emergency Medicine (ACEM) the Australasian College of Dermatologists (ACD) the Australasian College of Sport and Exercise Physicians (ACSEP) the Australia and New Zealand College of Anaesthetists (ANZCA) the

Close Parker Willmott White and Crowden

422 (2019) 27 JLM 415

The above terms were also queried using the Google search engine and in MEDLINEPUBMED and Scopus academic databases in combination with the term ldquoAustraliardquo

C Stage 3 Data Coding and OrganisationBased on the initial searches EC created a database of documents that potentially met the inclusion criteria EC and MP reviewed and discussed all documents that did not clearly meet the inclusion criteria and arrived at a final list of policies to include in this review which all authors agreed on These were assigned to one of three groups

bull Category 1 Commonwealth government documentsbull Category 2 StateTerritory government documents andbull Category 3 Professional organisation documents

Documents were grouped into these categories to facilitate ease of comparison across documents by similar authors and to more easily identify which policies would apply to a given doctor in a specific specialty in a specific jurisdiction For example while the Category 1 policies would in theory apply to all doctors across Australia an intensive care doctor working in Queensland would be subject to only the Queensland documents from Category 2 and the relevant professional organisation documents in Category 3

D Stage 4 Data AnalysisOnce the list of policies was settled EC uploaded them into NVivo 12 (QSR International Pty Ltd 2018) and developed a list of initial codes which formed the basis for the protocol EC coded the policies by comparing and contrasting key differences between the policies and between the categories68 EC also developed Excel matrices to summarise the policies and facilitate comparisons of how futility was defined and guidance given about the decision-making process69

E Stage 5 ReportStage 5 of Altheidersquos method is synthesising and interpreting the results which is set out in the next two parts

V RESULTS

The results are grouped into three main themes (1) the scope and source of medical futility policies in Australia (2) terminology used to describe futility or a like concept and (3) the extent of guidance about the decision-making process and dispute resolution

A Scope and Source of Australian Medical Futility PoliciesAcross Australia we located 23 policies that met the inclusion criteria (Table 1) Ten policies were from State and Territory governments (Category 2) Another ten policies were from professional organisations (Category 3) with five of these from national medical associations and societies (Category 3a) and five from medical colleges (Category 3b) There were three relevant policies issued by the Commonwealth Government (Category 1)

Australian College of Rural and Remote Medicine (ACRRM) the College of Intensive Care Medicine of Australia and New Zealand (CICM) the Royal Australasian College of Medical Administrators (RACMA) the Royal Australasian College of Obstetricians amp Gynaecologists (RANZCOG) the Royal Australasian College of Physicians (RACP) the Royal Australasian College of Surgeons (RACS) the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) Royal Australian and New Zealand College of Psychiatrists (RANZCP) the Royal Australian and New Zealand College of Radiologists (RANZCR) the Royal Australian College of General Practitioners (RACGP) and the Royal College of Pathologists of Australia (RCPA)68 DL Altheide and CJ Schneider ldquoProcess of Qualitative Document Analysisrdquo in Qualitative Media Analysis (SAGE Publications 2nd ed 2013)69 M Miles M Huberman and J Saldantildea Qualitative Data Analysis A Methods Sourcebook (SAGE Publications 3rd ed 2014)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 423

TABLE 1 Current Australian Policies That Address Decision Making about Withholding or Withdrawing Life-sustaining Treatment andor Futile Treatment at the End of Life

Source Name of Document (Year) Brief Description

Category 1 ndash Commonwealth Government

Australian Commission on Safety and Quality in Health Care

National Consensus Statement Essential Elements for Safe and High-Quality End-of-Life Care (2015)A

40-page document setting out suggested practice for end-of-life care in acute settings including guiding principles and corresponding actions

Medical Board of Australia

Good Medical Practice A Code of Conduct for Doctors in Australia (2014)B

25-page code setting out the standards of professional and ethical conduct for all registered doctors in Australia Section 312 is dedicated to end-of-life care

National Health and Medical Research Council

Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)C

66-page ethical framework to guide decision-making for persons in post-coma unresponsiveness (PCU) or a minimally responsive state

Category 2 ndash State and Territory Governments

New South Wales Government Department of Health

End-of-Life Care and Decision-Making ndash Guidelines (2005)D

17-page document setting out a process for reaching end-of-life decisions Includes principles and recommendations for shared decision-making

Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010)E

56-page report providing recommendations for how to navigate end-of-life conflicts in the hospital setting

Using Resuscitation Plans in End of Life Decisions (2014)F

21-page policy directive describing the standards and principles for the use of resuscitation plans (orders to use or withhold resuscitation measures) in patients 29 days and older

Queensland Government Department of Health

End-of-Life Care Guidelines for Decision-Making About Withholding and Withdrawing Life-Sustaining Measures from Adult Patients (2018)G

176-page reference document intended to support health professionals administrators policy-makers decision-managers who are involved in decision-making about life-sustaining measures

South Australia Government Department of Health

Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (2014)H

33-page policy directive directed at assisting health professionals to meet their legal obligations when providing medical assessment or treatment to patients who cannot consent due to a lack of voluntariness communication difficulties or impaired decision-making capacity

Consent to Medical Treatment and Health Care Policy Guideline (2014)I

39-page policy guideline aimed at providing guidance in meeting legislative requirements under guardianship and health care consent legislation including avenues for dispute resolution

Resuscitation Planning ndash 7 Step Pathway (2016)J

25-page policy directive aimed at health professionals and consumers that sets out a transparent process to make and document decisions about resuscitation and other life-sustaining treatments

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 5: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Close Parker Willmott White and Crowden

418 (2019) 27 JLM 415

were extremely unlikely or unable to recover27 At the same time a normative shift away from medical paternalism towards shared decision-making meant futility was also used to combat demands for excessive treatment from patients or their substitute decision-makers28 The central premise was that if treatment was ldquofutilerdquo that is unlikely to sufficiently benefit the patient then doctors were under no legal or ethical obligation to provide it In this sense ldquofutilerdquo is not merely descriptive but rather an indication of the doctorrsquos obligations Engelhardt and Kushf explain ldquo[t]o describe a situation as futile is to determine that it does not merit a particular interventionrdquo29

In 1992 Truog Brett and Frader described the concept of futility as one of the ldquonewest additions to the lexicon of bioethicsrdquo30 While nearly a decade later Helft Siegler and Lantos maintained that interest in the topic had waned31 persistent attention remains32 and empirical studies demonstrate that doctors are familiar with the term and use it in practice33 However there has been no consensus in the medical or ethical literature about what futility means or about empirical markers to delineate it34 Different definitions proposed include

bull Physiological futility ndash Treatment that has no physiologic effect (eg antibiotics for a virus or cardiopulmonary resuscitation for a patient who is in rigor mortis)35

bull Quantitative futility ndash Treatment that has a very low chance of conferring a benefit for example in less than 1 in 100 cases36

bull Qualitative futility ndash Treatment that fails to result in an acceptable quality of life37 or achieving an effect that the patient can appreciate as a benefit38

bull Imminent demise futility ndash Treatment that might confer some physiologic effect but cannot halt impending death39

bull Lethal condition futility ndash Treatment that will address a symptom but will not change the progress of an underlying lethal condition40

The Oxford English Dictionary defines ldquofutilerdquo as ldquo[i]ncapable of producing any result failing utterly of the desired end through intrinsic defect useless ineffectual vainrdquo41 In contrast the definitions above (with the exception of physiological futility) demonstrate that the concept is used to denote treatment beyond that which is strictly incapable of having an effect On this basis many commentators are critical of futility as a concept justifying a unilateral medical determination because in most circumstances assessing whether or not to withhold or withdraw life-sustaining treatment is a subjective exercise that

27 BA Brody and A Halevy ldquoIs Futility a Futile Conceptrdquo (1995) 20(2) J Med Philos 12328 Helft Siegler and Lantos n 26 294 Wilkinson and Savulescu n 26 161 White et al n 26 459ndash46229 HT Engelhardt and G Khushf ldquoFutile Care for the Critically Ill Patientrdquo (1995) 1(4) Curr Opin Crit Care 329 330 See also GT Bosslet B Lo and DB White ldquoResolving Family-clinician Disputes in the Context of Contested Definitions of Futilityrdquo (2018) 60(3) Perspect Biol Med 31430 RD Truog AS Brett and J Frader ldquoThe Problem with Futilityrdquo (1992) 326(23) N Engl J Med 1560 156031 Helft Siegler and Lantos n 2632 White et al n 26 459ndash46233 See eg B White et al ldquoWhat Does lsquoFutilityrsquo Mean An Empirical Study of Doctorsrsquo Perceptionsrdquo (2016) 204(8) Med J Aus 318 R Sibbald J Downar and L Hawryluck ldquoPerceptions of lsquoFutile Carersquo among Caregivers in Intensive Care Unitsrdquo (2007) 177(10) CMAJ 120134 Helft Siegler and Lantos n 26 Wilkinson and Savulescu n 2635 Brody and Halevy n 27 Bosslet et al n 2236 LJ Schneiderman NS Jecker and AR Jonsen ldquoMedical Futility Its Meaning and Ethical Implicationsrdquo (1990) 112(12) Ann Intern Med 94937 Brody and Halevy n 2738 LJ Schneiderman ldquoDefining Medical Futility and Improving Medical Carerdquo (2011) 8(2) J Bioeth Inq 12339 Brody and Halevy n 2740 Brody and Halevy n 2741 OED Online futile adj (OUP September 2019 subscription service) lthttpswwwoedcomgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 419

depends on a patientrsquos values and on the goals of treatment42 For example a patient who is in a persistent vegetative state might have previously expressed strong views that life was worth prolonging no matter her condition and so not regard continued treatment as futile By contrast this treatment could be considered futile by another person who believed that such a life was not worth living

The criticism that futility is a flawed concept has prompted two key responses The first is a semantic shift away from the determinate-sounding ldquofutilityrdquo towards terms that are either more neutral (eg ldquonon-beneficial treatmentrdquo43) or terms that are more explicitly subjective (ie ldquopotentially inappropriate treatmentrdquo44 or ldquodisputed treatmentrdquo45) Indeed although futility still appears in many of the policies considered in this article academic literature increasingly adopts these other terms in particular ldquonon-beneficial treatmentrdquo46 In this article these terms will be used interchangeably but reflecting the terminology of the policies being analysed ldquofutile treatmentrdquo or ldquofutilityrdquo is predominantly used

The second response is to advocate for a ldquoprocedural approachrdquo to decisions47 A procedural approach is directed at establishing fair and transparent processes to arrive at a shared decision or to resolve disputes In Texas this is a binding process set out in legislation48 More commonly procedural approaches are laid out in policies set by hospitals governments or other professional bodies such as medical associations49 A procedural approach typically includes avenues for appeal and review such as obtaining a second opinion review by a hospital ethics committee transfer to another medical practitioner or institution and advising patients or substitute decision-makers of their right to access the courts50

III A KEY INTERNATIONAL APPROACH

As mentioned in the Introduction a number of international critical care organisations produced a significant medical futility policy in 2015 commonly referred to as the ldquoMulti-Society Statementrdquo51 Led by the American Thoracic Society (ATS) part of the impetus for the Multi-Society Statement was that existing professional statements on managing end-of-life conflict differed considerably in their definition of ldquofutilityrdquo and recommendations for management The Statement notes ldquo[c]onflicting guidance from professional societies is problematic because it may exacerbate confusion about this topic among clinicians and policymakersrdquo52 Recognising that these are complex decisions that warrant clear guidance for clinicians the ATS assembled a working group of several medical societies53 to develop a

42 See eg Bosslet et al n 22 Helft Siegler and Lantos n 26 Empirical studies have also confirmed doctors perceive futility is often subjective favouring a qualitative approach See eg White et al n 33 E Close et al ldquoDoctorsrsquo Perceptions of How Resource Limitations Relate to Futility in End-of-Life Decision Making A Qualitative Analysisrdquo (2019) 45(6) J Med Ethics 37343 JL Nates et al ldquoICU Admission Discharge and Triage Guidelines A Framework to Enhance Clinical Operations Development of Institutional Policies and Further Researchrdquo (2016) 44(8) Crit Care Med 1553 AS Brett and LB McCullough ldquoGetting Past Words Futility and the Professional Ethics of Life-sustaining Treatmentrdquo (2018) 60(3) Perspect Biol Med 31944 Bosslet et al n 2245 B White L Willmott and E Close ldquoFutile Non-beneficial Potentially Inappropriate or lsquoDisputedrsquo Treatmentrdquo in N Emmerich et al (eds) Contemporary European Perspectives on the Ethics of End of Life Care (Springer 2020)46 See eg Nates et al n 43 J Downar et al ldquoNonbeneficial Treatment Canada Definitions Causes and Potential Solutions from the Perspective of Healthcare Practitionersrdquo (2015) 43(2) Crit Care Med 270 M Cardona-Morrell et al ldquoNon-beneficial Treatments in Hospital at the End of Life A Systematic Review on Extent of the Problemrdquo (2016) 28(4) Int J Qual Health Care 147 Bosslet et al n 26 S Moratti ldquoThe Development of lsquoMedical Futilityrsquo Towards a Procedural Approach Based on the Role of the Medical Professionrdquo (2009) 35(6) J Med Ethics 369 C Stewart ldquoFutility Determination as a Process Problems with Medical Sovereignty Legal Issues and the Strengths and Weakness of the Procedural Approachrdquo (2011) 8(2) J Bioeth Inq 15548 Advance Directives Act Texas Health and Safety Code sectsect166001ndash166166 (1999)49 D White and T Pope ldquoMedical Futility and Potentially Inappropriate Treatmentrdquo in SJ Younger and RM Arnold (eds) The Oxford Handbook of Ethics at the End of Life (OUP 2018)50 Stewart n 47 White and Pope n 4951 Bosslet et al n 2252 Bosslet et al n 22 132053 The policy was issued by the American Thoracic Society and approved by the American Association of Critical Care Nurses (ACCN) the American College of Chest Physicians (ACCP) the European Society for Intensive Care Medicine (ESICM) and the Society of Critical Care Medicine (SCCM) See Bosslet et al n 22

Close Parker Willmott White and Crowden

420 (2019) 27 JLM 415

framework for decision-making and provide recommendations for preventing and addressing disputes This policy is a useful benchmark for an Australian analysis as it illustrates these two trends discussed in the preceding section changes in terminology and a procedural approach to decisions

The most significant recommendation in the Multi-Society Statement is to narrow the scope of ldquomedical futilityrdquo by drawing a distinction between treatments that are ldquofutilerdquo (which ldquocannot accomplish the intended physiological goalrdquo) and those that are ldquopotentially inappropriaterdquo (which ldquohave at least some chance of accomplishing the effect sought by the patient but clinicians believe that competing ethical considerations justify not providing themrdquo)54 The policy sets out clear procedures for each category of treatment This approach recognises that the majority of decisions about life-sustaining treatment involve potentially inappropriate treatment (warranting a process of negotiation with patients or their substitute decision-makers) not treatment that is physiologically futile (which doctors rightly should unilaterally refuse to provide) While this policy has critics55 in our view Pope rightly argues that by narrowing the scope of the term ldquomedical futilityrdquo the statement ldquooffers a richer and more precise vocabulary that facilitates better ethical decision-makingrdquo56 As such it is an important reference point for critical analyses of policy work on this topic Therefore with this key international comparator in mind the remainder of this article will evaluate the extent to which Australian medical futility policies address both terminology and the decision-making process

IV METHODOLOGY

There is very little discourse about Australian medical policies on futility57 and to our knowledge no comprehensive audit exists of current policies about withholding and withdrawing life-sustaining treatment from adult patients We therefore set out to study Australian policies about foregoing life-sustaining treatment to determine what guidance about futility is provided to Australian doctors who make end-of-life decisions We aimed to identify existing policies on withholding and withdrawing life-sustaining treatment and critically examine the extent to which they address medical futility (or a similar concept) at the end of life and how it is labelled and conceptualised We also aimed to evaluate to what extent the policies provide guidance about the decision-making process including the scope of unilateral decision-making and how to resolve disputes

We adopted Altheidersquos five-stage document analysis method to address some of the challenges of complex health policy analysis58 This is a widely recognised qualitative document analysis method that Altheide et al describe as ldquoan integrated method procedure and technique for locating identifying retrieving and analysing documents for their relevance significance and meaningrdquo59 Altheide et alrsquos five stages are (1) document sampling (2) data collection (3) data coding and organisation (4) data analysis and (5) reporting

54 Bosslet et al n 22 1319 The Multi-Society Statement also discusses ldquolegally discretionary and legally proscribed treatmentsrdquo those governed or prohibited by specific laws policies or procedures55 See eg Schneiderman Jecker and Jonsen n 3656 TM Pope ldquoMedical Futility and Potentially Inappropriate Treatment Better Ethics with More Precise Definitions and Languagerdquo (2018) 60(3) Perspect Biol Med 423 Elsewhere several of the authors advocate for a process that distinguishes physiological futility from value-laden decisions See White et al n 26 476ndash478 White Willmott and Close n 4557 The few studies that exist are limited to institutional policies or do not purport to constitute a comprehensive review See eg Martin n 23 Levinson et al n 23 Mills et al n 2358 G Walt et al ldquolsquoDoingrsquo Health Policy Analysis Methodological and Conceptual Reflections and Challengesrdquo (2008) 23(5) Health Policy Plan 30859 D Altheide et al ldquoEmergent Qualitative Document Analysisrdquo in SN Hesse-Biber and P Leavy (eds) Handbook of Emergent Methods (Guildford Press 2010) 127 The method was pioneered in the 1990s in the context of sociological studies of mass media but has been used more widely since and was recently employed in a study on Australian health policy research A Esbati et al ldquoLegislation Policies and Guidelines Related to Breastfeeding and the Baby Friendly Health Initiative in Australia A Document Analysisrdquo (2018) 42(1) Aust Health Rev 72

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 421

A Stage 1 Document SamplingThis review targeted current publicly available medical policies in all Australian jurisdictions that address decisions to withhold or withdraw life-sustaining treatment We defined ldquopolicyrdquo broadly as a written statement of principle intended to guide doctorsrsquo decisions about clinicalethical aspects of withholding or withdrawing life-sustaining treatment60 Using this broad definition of ldquopolicyrdquo we included documents intended as mere guidance or information not just policies in a formal binding sense Documents meeting these criteria were primarily professional guidelines health department policies position statements ethical statements and frameworks but broader documents aimed at a wider audience including health consumers and medical administrators were included in the initial sampling if they purported to provide specific guidance for doctors We also examined relevant reports intended to inform policy development Overarching medical codes of ethics were included when they made specific statements about withholding or withdrawing life-sustaining treatment or about futility

We excluded institutional policies such as those from hospitals and aged care facilities since these are typically not publicly available61 Strategy documents targeted solely at stakeholders other than doctors and those focused on aspects of end-of-life care other than withholding and withdrawing life-sustaining treatment were excluded for example strategies on focused solely on palliative care62 and advance care directives63 We also excluded purely clinical guidelines directed to specific therapies such as Choosing Wisely Australia64 and organ allocation policies65 Legislation and training modules and education programs for doctors were also excluded as these are distinct from policies

B Stage 2 Data CollectionAs a starting point we identified the bodies that would be likely to have policy on end-of-life care including Australian peak medical bodies and medical colleges and national State and Territory governments AC did an initial review which EC revisited and updated in 201966 For the more recent review EC searched the relevant bodiesrsquo websites using a range of terms including ldquofutile treatmentrdquo ldquofutilityrdquo ldquonon-beneficial treatmentrdquo ldquoinappropriate treatmentrdquo ldquowithholdrdquo ldquowithdrawrdquo ldquotreatment limitationrdquo ldquoend of life and policy or guidelinerdquo ldquoresuscitationrdquo ldquogoals of carerdquo ldquodispute or conflictrdquo EC also examined the professional guidelines and resources sections of all 15 Australian specialist medical colleges67 and searched the health department websites for each Australian State and Territory

60 We developed this from the definition of ldquoinstitutional policyrdquo in Goodridge n 21 1166 ldquodeclarations of the organizationsrsquo deeply held values hellip instructing employees on how to conduct business in a legal ethical and safe mannerrdquo61 Survey methodology is usually required to locate institutional policies See eg J Lemiengre et al ldquoInstitutional Ethics Policies on Medical End-of-Life Decisions A Literature Reviewrdquo (2007) 83(2) Health Policy 13162 See eg Palliative Care Australia National Palliative Care Standards (5th ed 2018) lthttppalliativecareorgauwp-contentuploadsdlm_uploads201811PalliativeCare-National-Standards-2018_Nov-webpdfgt63 See eg The Clinical Technical and Ethical Principal Committee of the Australian Health Ministersrsquo Advisory Council A National Framework for Advance Care Directives (Australian Health Ministers Advisory Council 2011) lthttpwwwcoaghealthcouncilgovauPortals0A20National20Framework20for20Advance20Care20Directives_September202011pdfgt Queensland Government Department of Health Advance Care Planning Clinical Guidelines (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0037688618acp-guidelinespdfgt64 See eg Choosing Wisely Australia The Royal Australian College of General Practitioners Tests Treatments and Procedures Clinicians and Consumers Should Question (NPS MedicineWise 2015ndash2016) lthttpwwwchoosingwiselyorgaurecommendationsracgpgt65 See eg The Transplantation Society of Australia and New Zealand Clinical Guidelines for Organ Transplantation from Deceased Donors (2019) lthttpswwwtsanzcomauTSANZ_Clinical_Guidelines_Version2013[6986]pdfgt National Health and Medical Research Council Ethical Guidelines for Organ Transplantation from Deceased Donors (2016) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-organ-transplantation-deceased-donorsgt66 Results of the review are current as of 1 November 201967 Australian Health Practitioner Regulation Agency Approved Programs of Study (AHPRA amp National Boards) lthttpswwwahpragovaueducationapproved-programs-of-studyaspxref=medical20practitioneramptype=specialistgt The colleges are the Australasian College for Emergency Medicine (ACEM) the Australasian College of Dermatologists (ACD) the Australasian College of Sport and Exercise Physicians (ACSEP) the Australia and New Zealand College of Anaesthetists (ANZCA) the

Close Parker Willmott White and Crowden

422 (2019) 27 JLM 415

The above terms were also queried using the Google search engine and in MEDLINEPUBMED and Scopus academic databases in combination with the term ldquoAustraliardquo

C Stage 3 Data Coding and OrganisationBased on the initial searches EC created a database of documents that potentially met the inclusion criteria EC and MP reviewed and discussed all documents that did not clearly meet the inclusion criteria and arrived at a final list of policies to include in this review which all authors agreed on These were assigned to one of three groups

bull Category 1 Commonwealth government documentsbull Category 2 StateTerritory government documents andbull Category 3 Professional organisation documents

Documents were grouped into these categories to facilitate ease of comparison across documents by similar authors and to more easily identify which policies would apply to a given doctor in a specific specialty in a specific jurisdiction For example while the Category 1 policies would in theory apply to all doctors across Australia an intensive care doctor working in Queensland would be subject to only the Queensland documents from Category 2 and the relevant professional organisation documents in Category 3

D Stage 4 Data AnalysisOnce the list of policies was settled EC uploaded them into NVivo 12 (QSR International Pty Ltd 2018) and developed a list of initial codes which formed the basis for the protocol EC coded the policies by comparing and contrasting key differences between the policies and between the categories68 EC also developed Excel matrices to summarise the policies and facilitate comparisons of how futility was defined and guidance given about the decision-making process69

E Stage 5 ReportStage 5 of Altheidersquos method is synthesising and interpreting the results which is set out in the next two parts

V RESULTS

The results are grouped into three main themes (1) the scope and source of medical futility policies in Australia (2) terminology used to describe futility or a like concept and (3) the extent of guidance about the decision-making process and dispute resolution

A Scope and Source of Australian Medical Futility PoliciesAcross Australia we located 23 policies that met the inclusion criteria (Table 1) Ten policies were from State and Territory governments (Category 2) Another ten policies were from professional organisations (Category 3) with five of these from national medical associations and societies (Category 3a) and five from medical colleges (Category 3b) There were three relevant policies issued by the Commonwealth Government (Category 1)

Australian College of Rural and Remote Medicine (ACRRM) the College of Intensive Care Medicine of Australia and New Zealand (CICM) the Royal Australasian College of Medical Administrators (RACMA) the Royal Australasian College of Obstetricians amp Gynaecologists (RANZCOG) the Royal Australasian College of Physicians (RACP) the Royal Australasian College of Surgeons (RACS) the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) Royal Australian and New Zealand College of Psychiatrists (RANZCP) the Royal Australian and New Zealand College of Radiologists (RANZCR) the Royal Australian College of General Practitioners (RACGP) and the Royal College of Pathologists of Australia (RCPA)68 DL Altheide and CJ Schneider ldquoProcess of Qualitative Document Analysisrdquo in Qualitative Media Analysis (SAGE Publications 2nd ed 2013)69 M Miles M Huberman and J Saldantildea Qualitative Data Analysis A Methods Sourcebook (SAGE Publications 3rd ed 2014)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 423

TABLE 1 Current Australian Policies That Address Decision Making about Withholding or Withdrawing Life-sustaining Treatment andor Futile Treatment at the End of Life

Source Name of Document (Year) Brief Description

Category 1 ndash Commonwealth Government

Australian Commission on Safety and Quality in Health Care

National Consensus Statement Essential Elements for Safe and High-Quality End-of-Life Care (2015)A

40-page document setting out suggested practice for end-of-life care in acute settings including guiding principles and corresponding actions

Medical Board of Australia

Good Medical Practice A Code of Conduct for Doctors in Australia (2014)B

25-page code setting out the standards of professional and ethical conduct for all registered doctors in Australia Section 312 is dedicated to end-of-life care

National Health and Medical Research Council

Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)C

66-page ethical framework to guide decision-making for persons in post-coma unresponsiveness (PCU) or a minimally responsive state

Category 2 ndash State and Territory Governments

New South Wales Government Department of Health

End-of-Life Care and Decision-Making ndash Guidelines (2005)D

17-page document setting out a process for reaching end-of-life decisions Includes principles and recommendations for shared decision-making

Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010)E

56-page report providing recommendations for how to navigate end-of-life conflicts in the hospital setting

Using Resuscitation Plans in End of Life Decisions (2014)F

21-page policy directive describing the standards and principles for the use of resuscitation plans (orders to use or withhold resuscitation measures) in patients 29 days and older

Queensland Government Department of Health

End-of-Life Care Guidelines for Decision-Making About Withholding and Withdrawing Life-Sustaining Measures from Adult Patients (2018)G

176-page reference document intended to support health professionals administrators policy-makers decision-managers who are involved in decision-making about life-sustaining measures

South Australia Government Department of Health

Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (2014)H

33-page policy directive directed at assisting health professionals to meet their legal obligations when providing medical assessment or treatment to patients who cannot consent due to a lack of voluntariness communication difficulties or impaired decision-making capacity

Consent to Medical Treatment and Health Care Policy Guideline (2014)I

39-page policy guideline aimed at providing guidance in meeting legislative requirements under guardianship and health care consent legislation including avenues for dispute resolution

Resuscitation Planning ndash 7 Step Pathway (2016)J

25-page policy directive aimed at health professionals and consumers that sets out a transparent process to make and document decisions about resuscitation and other life-sustaining treatments

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 6: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 419

depends on a patientrsquos values and on the goals of treatment42 For example a patient who is in a persistent vegetative state might have previously expressed strong views that life was worth prolonging no matter her condition and so not regard continued treatment as futile By contrast this treatment could be considered futile by another person who believed that such a life was not worth living

The criticism that futility is a flawed concept has prompted two key responses The first is a semantic shift away from the determinate-sounding ldquofutilityrdquo towards terms that are either more neutral (eg ldquonon-beneficial treatmentrdquo43) or terms that are more explicitly subjective (ie ldquopotentially inappropriate treatmentrdquo44 or ldquodisputed treatmentrdquo45) Indeed although futility still appears in many of the policies considered in this article academic literature increasingly adopts these other terms in particular ldquonon-beneficial treatmentrdquo46 In this article these terms will be used interchangeably but reflecting the terminology of the policies being analysed ldquofutile treatmentrdquo or ldquofutilityrdquo is predominantly used

The second response is to advocate for a ldquoprocedural approachrdquo to decisions47 A procedural approach is directed at establishing fair and transparent processes to arrive at a shared decision or to resolve disputes In Texas this is a binding process set out in legislation48 More commonly procedural approaches are laid out in policies set by hospitals governments or other professional bodies such as medical associations49 A procedural approach typically includes avenues for appeal and review such as obtaining a second opinion review by a hospital ethics committee transfer to another medical practitioner or institution and advising patients or substitute decision-makers of their right to access the courts50

III A KEY INTERNATIONAL APPROACH

As mentioned in the Introduction a number of international critical care organisations produced a significant medical futility policy in 2015 commonly referred to as the ldquoMulti-Society Statementrdquo51 Led by the American Thoracic Society (ATS) part of the impetus for the Multi-Society Statement was that existing professional statements on managing end-of-life conflict differed considerably in their definition of ldquofutilityrdquo and recommendations for management The Statement notes ldquo[c]onflicting guidance from professional societies is problematic because it may exacerbate confusion about this topic among clinicians and policymakersrdquo52 Recognising that these are complex decisions that warrant clear guidance for clinicians the ATS assembled a working group of several medical societies53 to develop a

42 See eg Bosslet et al n 22 Helft Siegler and Lantos n 26 Empirical studies have also confirmed doctors perceive futility is often subjective favouring a qualitative approach See eg White et al n 33 E Close et al ldquoDoctorsrsquo Perceptions of How Resource Limitations Relate to Futility in End-of-Life Decision Making A Qualitative Analysisrdquo (2019) 45(6) J Med Ethics 37343 JL Nates et al ldquoICU Admission Discharge and Triage Guidelines A Framework to Enhance Clinical Operations Development of Institutional Policies and Further Researchrdquo (2016) 44(8) Crit Care Med 1553 AS Brett and LB McCullough ldquoGetting Past Words Futility and the Professional Ethics of Life-sustaining Treatmentrdquo (2018) 60(3) Perspect Biol Med 31944 Bosslet et al n 2245 B White L Willmott and E Close ldquoFutile Non-beneficial Potentially Inappropriate or lsquoDisputedrsquo Treatmentrdquo in N Emmerich et al (eds) Contemporary European Perspectives on the Ethics of End of Life Care (Springer 2020)46 See eg Nates et al n 43 J Downar et al ldquoNonbeneficial Treatment Canada Definitions Causes and Potential Solutions from the Perspective of Healthcare Practitionersrdquo (2015) 43(2) Crit Care Med 270 M Cardona-Morrell et al ldquoNon-beneficial Treatments in Hospital at the End of Life A Systematic Review on Extent of the Problemrdquo (2016) 28(4) Int J Qual Health Care 147 Bosslet et al n 26 S Moratti ldquoThe Development of lsquoMedical Futilityrsquo Towards a Procedural Approach Based on the Role of the Medical Professionrdquo (2009) 35(6) J Med Ethics 369 C Stewart ldquoFutility Determination as a Process Problems with Medical Sovereignty Legal Issues and the Strengths and Weakness of the Procedural Approachrdquo (2011) 8(2) J Bioeth Inq 15548 Advance Directives Act Texas Health and Safety Code sectsect166001ndash166166 (1999)49 D White and T Pope ldquoMedical Futility and Potentially Inappropriate Treatmentrdquo in SJ Younger and RM Arnold (eds) The Oxford Handbook of Ethics at the End of Life (OUP 2018)50 Stewart n 47 White and Pope n 4951 Bosslet et al n 2252 Bosslet et al n 22 132053 The policy was issued by the American Thoracic Society and approved by the American Association of Critical Care Nurses (ACCN) the American College of Chest Physicians (ACCP) the European Society for Intensive Care Medicine (ESICM) and the Society of Critical Care Medicine (SCCM) See Bosslet et al n 22

Close Parker Willmott White and Crowden

420 (2019) 27 JLM 415

framework for decision-making and provide recommendations for preventing and addressing disputes This policy is a useful benchmark for an Australian analysis as it illustrates these two trends discussed in the preceding section changes in terminology and a procedural approach to decisions

The most significant recommendation in the Multi-Society Statement is to narrow the scope of ldquomedical futilityrdquo by drawing a distinction between treatments that are ldquofutilerdquo (which ldquocannot accomplish the intended physiological goalrdquo) and those that are ldquopotentially inappropriaterdquo (which ldquohave at least some chance of accomplishing the effect sought by the patient but clinicians believe that competing ethical considerations justify not providing themrdquo)54 The policy sets out clear procedures for each category of treatment This approach recognises that the majority of decisions about life-sustaining treatment involve potentially inappropriate treatment (warranting a process of negotiation with patients or their substitute decision-makers) not treatment that is physiologically futile (which doctors rightly should unilaterally refuse to provide) While this policy has critics55 in our view Pope rightly argues that by narrowing the scope of the term ldquomedical futilityrdquo the statement ldquooffers a richer and more precise vocabulary that facilitates better ethical decision-makingrdquo56 As such it is an important reference point for critical analyses of policy work on this topic Therefore with this key international comparator in mind the remainder of this article will evaluate the extent to which Australian medical futility policies address both terminology and the decision-making process

IV METHODOLOGY

There is very little discourse about Australian medical policies on futility57 and to our knowledge no comprehensive audit exists of current policies about withholding and withdrawing life-sustaining treatment from adult patients We therefore set out to study Australian policies about foregoing life-sustaining treatment to determine what guidance about futility is provided to Australian doctors who make end-of-life decisions We aimed to identify existing policies on withholding and withdrawing life-sustaining treatment and critically examine the extent to which they address medical futility (or a similar concept) at the end of life and how it is labelled and conceptualised We also aimed to evaluate to what extent the policies provide guidance about the decision-making process including the scope of unilateral decision-making and how to resolve disputes

We adopted Altheidersquos five-stage document analysis method to address some of the challenges of complex health policy analysis58 This is a widely recognised qualitative document analysis method that Altheide et al describe as ldquoan integrated method procedure and technique for locating identifying retrieving and analysing documents for their relevance significance and meaningrdquo59 Altheide et alrsquos five stages are (1) document sampling (2) data collection (3) data coding and organisation (4) data analysis and (5) reporting

54 Bosslet et al n 22 1319 The Multi-Society Statement also discusses ldquolegally discretionary and legally proscribed treatmentsrdquo those governed or prohibited by specific laws policies or procedures55 See eg Schneiderman Jecker and Jonsen n 3656 TM Pope ldquoMedical Futility and Potentially Inappropriate Treatment Better Ethics with More Precise Definitions and Languagerdquo (2018) 60(3) Perspect Biol Med 423 Elsewhere several of the authors advocate for a process that distinguishes physiological futility from value-laden decisions See White et al n 26 476ndash478 White Willmott and Close n 4557 The few studies that exist are limited to institutional policies or do not purport to constitute a comprehensive review See eg Martin n 23 Levinson et al n 23 Mills et al n 2358 G Walt et al ldquolsquoDoingrsquo Health Policy Analysis Methodological and Conceptual Reflections and Challengesrdquo (2008) 23(5) Health Policy Plan 30859 D Altheide et al ldquoEmergent Qualitative Document Analysisrdquo in SN Hesse-Biber and P Leavy (eds) Handbook of Emergent Methods (Guildford Press 2010) 127 The method was pioneered in the 1990s in the context of sociological studies of mass media but has been used more widely since and was recently employed in a study on Australian health policy research A Esbati et al ldquoLegislation Policies and Guidelines Related to Breastfeeding and the Baby Friendly Health Initiative in Australia A Document Analysisrdquo (2018) 42(1) Aust Health Rev 72

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 421

A Stage 1 Document SamplingThis review targeted current publicly available medical policies in all Australian jurisdictions that address decisions to withhold or withdraw life-sustaining treatment We defined ldquopolicyrdquo broadly as a written statement of principle intended to guide doctorsrsquo decisions about clinicalethical aspects of withholding or withdrawing life-sustaining treatment60 Using this broad definition of ldquopolicyrdquo we included documents intended as mere guidance or information not just policies in a formal binding sense Documents meeting these criteria were primarily professional guidelines health department policies position statements ethical statements and frameworks but broader documents aimed at a wider audience including health consumers and medical administrators were included in the initial sampling if they purported to provide specific guidance for doctors We also examined relevant reports intended to inform policy development Overarching medical codes of ethics were included when they made specific statements about withholding or withdrawing life-sustaining treatment or about futility

We excluded institutional policies such as those from hospitals and aged care facilities since these are typically not publicly available61 Strategy documents targeted solely at stakeholders other than doctors and those focused on aspects of end-of-life care other than withholding and withdrawing life-sustaining treatment were excluded for example strategies on focused solely on palliative care62 and advance care directives63 We also excluded purely clinical guidelines directed to specific therapies such as Choosing Wisely Australia64 and organ allocation policies65 Legislation and training modules and education programs for doctors were also excluded as these are distinct from policies

B Stage 2 Data CollectionAs a starting point we identified the bodies that would be likely to have policy on end-of-life care including Australian peak medical bodies and medical colleges and national State and Territory governments AC did an initial review which EC revisited and updated in 201966 For the more recent review EC searched the relevant bodiesrsquo websites using a range of terms including ldquofutile treatmentrdquo ldquofutilityrdquo ldquonon-beneficial treatmentrdquo ldquoinappropriate treatmentrdquo ldquowithholdrdquo ldquowithdrawrdquo ldquotreatment limitationrdquo ldquoend of life and policy or guidelinerdquo ldquoresuscitationrdquo ldquogoals of carerdquo ldquodispute or conflictrdquo EC also examined the professional guidelines and resources sections of all 15 Australian specialist medical colleges67 and searched the health department websites for each Australian State and Territory

60 We developed this from the definition of ldquoinstitutional policyrdquo in Goodridge n 21 1166 ldquodeclarations of the organizationsrsquo deeply held values hellip instructing employees on how to conduct business in a legal ethical and safe mannerrdquo61 Survey methodology is usually required to locate institutional policies See eg J Lemiengre et al ldquoInstitutional Ethics Policies on Medical End-of-Life Decisions A Literature Reviewrdquo (2007) 83(2) Health Policy 13162 See eg Palliative Care Australia National Palliative Care Standards (5th ed 2018) lthttppalliativecareorgauwp-contentuploadsdlm_uploads201811PalliativeCare-National-Standards-2018_Nov-webpdfgt63 See eg The Clinical Technical and Ethical Principal Committee of the Australian Health Ministersrsquo Advisory Council A National Framework for Advance Care Directives (Australian Health Ministers Advisory Council 2011) lthttpwwwcoaghealthcouncilgovauPortals0A20National20Framework20for20Advance20Care20Directives_September202011pdfgt Queensland Government Department of Health Advance Care Planning Clinical Guidelines (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0037688618acp-guidelinespdfgt64 See eg Choosing Wisely Australia The Royal Australian College of General Practitioners Tests Treatments and Procedures Clinicians and Consumers Should Question (NPS MedicineWise 2015ndash2016) lthttpwwwchoosingwiselyorgaurecommendationsracgpgt65 See eg The Transplantation Society of Australia and New Zealand Clinical Guidelines for Organ Transplantation from Deceased Donors (2019) lthttpswwwtsanzcomauTSANZ_Clinical_Guidelines_Version2013[6986]pdfgt National Health and Medical Research Council Ethical Guidelines for Organ Transplantation from Deceased Donors (2016) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-organ-transplantation-deceased-donorsgt66 Results of the review are current as of 1 November 201967 Australian Health Practitioner Regulation Agency Approved Programs of Study (AHPRA amp National Boards) lthttpswwwahpragovaueducationapproved-programs-of-studyaspxref=medical20practitioneramptype=specialistgt The colleges are the Australasian College for Emergency Medicine (ACEM) the Australasian College of Dermatologists (ACD) the Australasian College of Sport and Exercise Physicians (ACSEP) the Australia and New Zealand College of Anaesthetists (ANZCA) the

Close Parker Willmott White and Crowden

422 (2019) 27 JLM 415

The above terms were also queried using the Google search engine and in MEDLINEPUBMED and Scopus academic databases in combination with the term ldquoAustraliardquo

C Stage 3 Data Coding and OrganisationBased on the initial searches EC created a database of documents that potentially met the inclusion criteria EC and MP reviewed and discussed all documents that did not clearly meet the inclusion criteria and arrived at a final list of policies to include in this review which all authors agreed on These were assigned to one of three groups

bull Category 1 Commonwealth government documentsbull Category 2 StateTerritory government documents andbull Category 3 Professional organisation documents

Documents were grouped into these categories to facilitate ease of comparison across documents by similar authors and to more easily identify which policies would apply to a given doctor in a specific specialty in a specific jurisdiction For example while the Category 1 policies would in theory apply to all doctors across Australia an intensive care doctor working in Queensland would be subject to only the Queensland documents from Category 2 and the relevant professional organisation documents in Category 3

D Stage 4 Data AnalysisOnce the list of policies was settled EC uploaded them into NVivo 12 (QSR International Pty Ltd 2018) and developed a list of initial codes which formed the basis for the protocol EC coded the policies by comparing and contrasting key differences between the policies and between the categories68 EC also developed Excel matrices to summarise the policies and facilitate comparisons of how futility was defined and guidance given about the decision-making process69

E Stage 5 ReportStage 5 of Altheidersquos method is synthesising and interpreting the results which is set out in the next two parts

V RESULTS

The results are grouped into three main themes (1) the scope and source of medical futility policies in Australia (2) terminology used to describe futility or a like concept and (3) the extent of guidance about the decision-making process and dispute resolution

A Scope and Source of Australian Medical Futility PoliciesAcross Australia we located 23 policies that met the inclusion criteria (Table 1) Ten policies were from State and Territory governments (Category 2) Another ten policies were from professional organisations (Category 3) with five of these from national medical associations and societies (Category 3a) and five from medical colleges (Category 3b) There were three relevant policies issued by the Commonwealth Government (Category 1)

Australian College of Rural and Remote Medicine (ACRRM) the College of Intensive Care Medicine of Australia and New Zealand (CICM) the Royal Australasian College of Medical Administrators (RACMA) the Royal Australasian College of Obstetricians amp Gynaecologists (RANZCOG) the Royal Australasian College of Physicians (RACP) the Royal Australasian College of Surgeons (RACS) the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) Royal Australian and New Zealand College of Psychiatrists (RANZCP) the Royal Australian and New Zealand College of Radiologists (RANZCR) the Royal Australian College of General Practitioners (RACGP) and the Royal College of Pathologists of Australia (RCPA)68 DL Altheide and CJ Schneider ldquoProcess of Qualitative Document Analysisrdquo in Qualitative Media Analysis (SAGE Publications 2nd ed 2013)69 M Miles M Huberman and J Saldantildea Qualitative Data Analysis A Methods Sourcebook (SAGE Publications 3rd ed 2014)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 423

TABLE 1 Current Australian Policies That Address Decision Making about Withholding or Withdrawing Life-sustaining Treatment andor Futile Treatment at the End of Life

Source Name of Document (Year) Brief Description

Category 1 ndash Commonwealth Government

Australian Commission on Safety and Quality in Health Care

National Consensus Statement Essential Elements for Safe and High-Quality End-of-Life Care (2015)A

40-page document setting out suggested practice for end-of-life care in acute settings including guiding principles and corresponding actions

Medical Board of Australia

Good Medical Practice A Code of Conduct for Doctors in Australia (2014)B

25-page code setting out the standards of professional and ethical conduct for all registered doctors in Australia Section 312 is dedicated to end-of-life care

National Health and Medical Research Council

Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)C

66-page ethical framework to guide decision-making for persons in post-coma unresponsiveness (PCU) or a minimally responsive state

Category 2 ndash State and Territory Governments

New South Wales Government Department of Health

End-of-Life Care and Decision-Making ndash Guidelines (2005)D

17-page document setting out a process for reaching end-of-life decisions Includes principles and recommendations for shared decision-making

Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010)E

56-page report providing recommendations for how to navigate end-of-life conflicts in the hospital setting

Using Resuscitation Plans in End of Life Decisions (2014)F

21-page policy directive describing the standards and principles for the use of resuscitation plans (orders to use or withhold resuscitation measures) in patients 29 days and older

Queensland Government Department of Health

End-of-Life Care Guidelines for Decision-Making About Withholding and Withdrawing Life-Sustaining Measures from Adult Patients (2018)G

176-page reference document intended to support health professionals administrators policy-makers decision-managers who are involved in decision-making about life-sustaining measures

South Australia Government Department of Health

Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (2014)H

33-page policy directive directed at assisting health professionals to meet their legal obligations when providing medical assessment or treatment to patients who cannot consent due to a lack of voluntariness communication difficulties or impaired decision-making capacity

Consent to Medical Treatment and Health Care Policy Guideline (2014)I

39-page policy guideline aimed at providing guidance in meeting legislative requirements under guardianship and health care consent legislation including avenues for dispute resolution

Resuscitation Planning ndash 7 Step Pathway (2016)J

25-page policy directive aimed at health professionals and consumers that sets out a transparent process to make and document decisions about resuscitation and other life-sustaining treatments

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 7: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Close Parker Willmott White and Crowden

420 (2019) 27 JLM 415

framework for decision-making and provide recommendations for preventing and addressing disputes This policy is a useful benchmark for an Australian analysis as it illustrates these two trends discussed in the preceding section changes in terminology and a procedural approach to decisions

The most significant recommendation in the Multi-Society Statement is to narrow the scope of ldquomedical futilityrdquo by drawing a distinction between treatments that are ldquofutilerdquo (which ldquocannot accomplish the intended physiological goalrdquo) and those that are ldquopotentially inappropriaterdquo (which ldquohave at least some chance of accomplishing the effect sought by the patient but clinicians believe that competing ethical considerations justify not providing themrdquo)54 The policy sets out clear procedures for each category of treatment This approach recognises that the majority of decisions about life-sustaining treatment involve potentially inappropriate treatment (warranting a process of negotiation with patients or their substitute decision-makers) not treatment that is physiologically futile (which doctors rightly should unilaterally refuse to provide) While this policy has critics55 in our view Pope rightly argues that by narrowing the scope of the term ldquomedical futilityrdquo the statement ldquooffers a richer and more precise vocabulary that facilitates better ethical decision-makingrdquo56 As such it is an important reference point for critical analyses of policy work on this topic Therefore with this key international comparator in mind the remainder of this article will evaluate the extent to which Australian medical futility policies address both terminology and the decision-making process

IV METHODOLOGY

There is very little discourse about Australian medical policies on futility57 and to our knowledge no comprehensive audit exists of current policies about withholding and withdrawing life-sustaining treatment from adult patients We therefore set out to study Australian policies about foregoing life-sustaining treatment to determine what guidance about futility is provided to Australian doctors who make end-of-life decisions We aimed to identify existing policies on withholding and withdrawing life-sustaining treatment and critically examine the extent to which they address medical futility (or a similar concept) at the end of life and how it is labelled and conceptualised We also aimed to evaluate to what extent the policies provide guidance about the decision-making process including the scope of unilateral decision-making and how to resolve disputes

We adopted Altheidersquos five-stage document analysis method to address some of the challenges of complex health policy analysis58 This is a widely recognised qualitative document analysis method that Altheide et al describe as ldquoan integrated method procedure and technique for locating identifying retrieving and analysing documents for their relevance significance and meaningrdquo59 Altheide et alrsquos five stages are (1) document sampling (2) data collection (3) data coding and organisation (4) data analysis and (5) reporting

54 Bosslet et al n 22 1319 The Multi-Society Statement also discusses ldquolegally discretionary and legally proscribed treatmentsrdquo those governed or prohibited by specific laws policies or procedures55 See eg Schneiderman Jecker and Jonsen n 3656 TM Pope ldquoMedical Futility and Potentially Inappropriate Treatment Better Ethics with More Precise Definitions and Languagerdquo (2018) 60(3) Perspect Biol Med 423 Elsewhere several of the authors advocate for a process that distinguishes physiological futility from value-laden decisions See White et al n 26 476ndash478 White Willmott and Close n 4557 The few studies that exist are limited to institutional policies or do not purport to constitute a comprehensive review See eg Martin n 23 Levinson et al n 23 Mills et al n 2358 G Walt et al ldquolsquoDoingrsquo Health Policy Analysis Methodological and Conceptual Reflections and Challengesrdquo (2008) 23(5) Health Policy Plan 30859 D Altheide et al ldquoEmergent Qualitative Document Analysisrdquo in SN Hesse-Biber and P Leavy (eds) Handbook of Emergent Methods (Guildford Press 2010) 127 The method was pioneered in the 1990s in the context of sociological studies of mass media but has been used more widely since and was recently employed in a study on Australian health policy research A Esbati et al ldquoLegislation Policies and Guidelines Related to Breastfeeding and the Baby Friendly Health Initiative in Australia A Document Analysisrdquo (2018) 42(1) Aust Health Rev 72

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 421

A Stage 1 Document SamplingThis review targeted current publicly available medical policies in all Australian jurisdictions that address decisions to withhold or withdraw life-sustaining treatment We defined ldquopolicyrdquo broadly as a written statement of principle intended to guide doctorsrsquo decisions about clinicalethical aspects of withholding or withdrawing life-sustaining treatment60 Using this broad definition of ldquopolicyrdquo we included documents intended as mere guidance or information not just policies in a formal binding sense Documents meeting these criteria were primarily professional guidelines health department policies position statements ethical statements and frameworks but broader documents aimed at a wider audience including health consumers and medical administrators were included in the initial sampling if they purported to provide specific guidance for doctors We also examined relevant reports intended to inform policy development Overarching medical codes of ethics were included when they made specific statements about withholding or withdrawing life-sustaining treatment or about futility

We excluded institutional policies such as those from hospitals and aged care facilities since these are typically not publicly available61 Strategy documents targeted solely at stakeholders other than doctors and those focused on aspects of end-of-life care other than withholding and withdrawing life-sustaining treatment were excluded for example strategies on focused solely on palliative care62 and advance care directives63 We also excluded purely clinical guidelines directed to specific therapies such as Choosing Wisely Australia64 and organ allocation policies65 Legislation and training modules and education programs for doctors were also excluded as these are distinct from policies

B Stage 2 Data CollectionAs a starting point we identified the bodies that would be likely to have policy on end-of-life care including Australian peak medical bodies and medical colleges and national State and Territory governments AC did an initial review which EC revisited and updated in 201966 For the more recent review EC searched the relevant bodiesrsquo websites using a range of terms including ldquofutile treatmentrdquo ldquofutilityrdquo ldquonon-beneficial treatmentrdquo ldquoinappropriate treatmentrdquo ldquowithholdrdquo ldquowithdrawrdquo ldquotreatment limitationrdquo ldquoend of life and policy or guidelinerdquo ldquoresuscitationrdquo ldquogoals of carerdquo ldquodispute or conflictrdquo EC also examined the professional guidelines and resources sections of all 15 Australian specialist medical colleges67 and searched the health department websites for each Australian State and Territory

60 We developed this from the definition of ldquoinstitutional policyrdquo in Goodridge n 21 1166 ldquodeclarations of the organizationsrsquo deeply held values hellip instructing employees on how to conduct business in a legal ethical and safe mannerrdquo61 Survey methodology is usually required to locate institutional policies See eg J Lemiengre et al ldquoInstitutional Ethics Policies on Medical End-of-Life Decisions A Literature Reviewrdquo (2007) 83(2) Health Policy 13162 See eg Palliative Care Australia National Palliative Care Standards (5th ed 2018) lthttppalliativecareorgauwp-contentuploadsdlm_uploads201811PalliativeCare-National-Standards-2018_Nov-webpdfgt63 See eg The Clinical Technical and Ethical Principal Committee of the Australian Health Ministersrsquo Advisory Council A National Framework for Advance Care Directives (Australian Health Ministers Advisory Council 2011) lthttpwwwcoaghealthcouncilgovauPortals0A20National20Framework20for20Advance20Care20Directives_September202011pdfgt Queensland Government Department of Health Advance Care Planning Clinical Guidelines (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0037688618acp-guidelinespdfgt64 See eg Choosing Wisely Australia The Royal Australian College of General Practitioners Tests Treatments and Procedures Clinicians and Consumers Should Question (NPS MedicineWise 2015ndash2016) lthttpwwwchoosingwiselyorgaurecommendationsracgpgt65 See eg The Transplantation Society of Australia and New Zealand Clinical Guidelines for Organ Transplantation from Deceased Donors (2019) lthttpswwwtsanzcomauTSANZ_Clinical_Guidelines_Version2013[6986]pdfgt National Health and Medical Research Council Ethical Guidelines for Organ Transplantation from Deceased Donors (2016) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-organ-transplantation-deceased-donorsgt66 Results of the review are current as of 1 November 201967 Australian Health Practitioner Regulation Agency Approved Programs of Study (AHPRA amp National Boards) lthttpswwwahpragovaueducationapproved-programs-of-studyaspxref=medical20practitioneramptype=specialistgt The colleges are the Australasian College for Emergency Medicine (ACEM) the Australasian College of Dermatologists (ACD) the Australasian College of Sport and Exercise Physicians (ACSEP) the Australia and New Zealand College of Anaesthetists (ANZCA) the

Close Parker Willmott White and Crowden

422 (2019) 27 JLM 415

The above terms were also queried using the Google search engine and in MEDLINEPUBMED and Scopus academic databases in combination with the term ldquoAustraliardquo

C Stage 3 Data Coding and OrganisationBased on the initial searches EC created a database of documents that potentially met the inclusion criteria EC and MP reviewed and discussed all documents that did not clearly meet the inclusion criteria and arrived at a final list of policies to include in this review which all authors agreed on These were assigned to one of three groups

bull Category 1 Commonwealth government documentsbull Category 2 StateTerritory government documents andbull Category 3 Professional organisation documents

Documents were grouped into these categories to facilitate ease of comparison across documents by similar authors and to more easily identify which policies would apply to a given doctor in a specific specialty in a specific jurisdiction For example while the Category 1 policies would in theory apply to all doctors across Australia an intensive care doctor working in Queensland would be subject to only the Queensland documents from Category 2 and the relevant professional organisation documents in Category 3

D Stage 4 Data AnalysisOnce the list of policies was settled EC uploaded them into NVivo 12 (QSR International Pty Ltd 2018) and developed a list of initial codes which formed the basis for the protocol EC coded the policies by comparing and contrasting key differences between the policies and between the categories68 EC also developed Excel matrices to summarise the policies and facilitate comparisons of how futility was defined and guidance given about the decision-making process69

E Stage 5 ReportStage 5 of Altheidersquos method is synthesising and interpreting the results which is set out in the next two parts

V RESULTS

The results are grouped into three main themes (1) the scope and source of medical futility policies in Australia (2) terminology used to describe futility or a like concept and (3) the extent of guidance about the decision-making process and dispute resolution

A Scope and Source of Australian Medical Futility PoliciesAcross Australia we located 23 policies that met the inclusion criteria (Table 1) Ten policies were from State and Territory governments (Category 2) Another ten policies were from professional organisations (Category 3) with five of these from national medical associations and societies (Category 3a) and five from medical colleges (Category 3b) There were three relevant policies issued by the Commonwealth Government (Category 1)

Australian College of Rural and Remote Medicine (ACRRM) the College of Intensive Care Medicine of Australia and New Zealand (CICM) the Royal Australasian College of Medical Administrators (RACMA) the Royal Australasian College of Obstetricians amp Gynaecologists (RANZCOG) the Royal Australasian College of Physicians (RACP) the Royal Australasian College of Surgeons (RACS) the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) Royal Australian and New Zealand College of Psychiatrists (RANZCP) the Royal Australian and New Zealand College of Radiologists (RANZCR) the Royal Australian College of General Practitioners (RACGP) and the Royal College of Pathologists of Australia (RCPA)68 DL Altheide and CJ Schneider ldquoProcess of Qualitative Document Analysisrdquo in Qualitative Media Analysis (SAGE Publications 2nd ed 2013)69 M Miles M Huberman and J Saldantildea Qualitative Data Analysis A Methods Sourcebook (SAGE Publications 3rd ed 2014)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 423

TABLE 1 Current Australian Policies That Address Decision Making about Withholding or Withdrawing Life-sustaining Treatment andor Futile Treatment at the End of Life

Source Name of Document (Year) Brief Description

Category 1 ndash Commonwealth Government

Australian Commission on Safety and Quality in Health Care

National Consensus Statement Essential Elements for Safe and High-Quality End-of-Life Care (2015)A

40-page document setting out suggested practice for end-of-life care in acute settings including guiding principles and corresponding actions

Medical Board of Australia

Good Medical Practice A Code of Conduct for Doctors in Australia (2014)B

25-page code setting out the standards of professional and ethical conduct for all registered doctors in Australia Section 312 is dedicated to end-of-life care

National Health and Medical Research Council

Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)C

66-page ethical framework to guide decision-making for persons in post-coma unresponsiveness (PCU) or a minimally responsive state

Category 2 ndash State and Territory Governments

New South Wales Government Department of Health

End-of-Life Care and Decision-Making ndash Guidelines (2005)D

17-page document setting out a process for reaching end-of-life decisions Includes principles and recommendations for shared decision-making

Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010)E

56-page report providing recommendations for how to navigate end-of-life conflicts in the hospital setting

Using Resuscitation Plans in End of Life Decisions (2014)F

21-page policy directive describing the standards and principles for the use of resuscitation plans (orders to use or withhold resuscitation measures) in patients 29 days and older

Queensland Government Department of Health

End-of-Life Care Guidelines for Decision-Making About Withholding and Withdrawing Life-Sustaining Measures from Adult Patients (2018)G

176-page reference document intended to support health professionals administrators policy-makers decision-managers who are involved in decision-making about life-sustaining measures

South Australia Government Department of Health

Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (2014)H

33-page policy directive directed at assisting health professionals to meet their legal obligations when providing medical assessment or treatment to patients who cannot consent due to a lack of voluntariness communication difficulties or impaired decision-making capacity

Consent to Medical Treatment and Health Care Policy Guideline (2014)I

39-page policy guideline aimed at providing guidance in meeting legislative requirements under guardianship and health care consent legislation including avenues for dispute resolution

Resuscitation Planning ndash 7 Step Pathway (2016)J

25-page policy directive aimed at health professionals and consumers that sets out a transparent process to make and document decisions about resuscitation and other life-sustaining treatments

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 8: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 421

A Stage 1 Document SamplingThis review targeted current publicly available medical policies in all Australian jurisdictions that address decisions to withhold or withdraw life-sustaining treatment We defined ldquopolicyrdquo broadly as a written statement of principle intended to guide doctorsrsquo decisions about clinicalethical aspects of withholding or withdrawing life-sustaining treatment60 Using this broad definition of ldquopolicyrdquo we included documents intended as mere guidance or information not just policies in a formal binding sense Documents meeting these criteria were primarily professional guidelines health department policies position statements ethical statements and frameworks but broader documents aimed at a wider audience including health consumers and medical administrators were included in the initial sampling if they purported to provide specific guidance for doctors We also examined relevant reports intended to inform policy development Overarching medical codes of ethics were included when they made specific statements about withholding or withdrawing life-sustaining treatment or about futility

We excluded institutional policies such as those from hospitals and aged care facilities since these are typically not publicly available61 Strategy documents targeted solely at stakeholders other than doctors and those focused on aspects of end-of-life care other than withholding and withdrawing life-sustaining treatment were excluded for example strategies on focused solely on palliative care62 and advance care directives63 We also excluded purely clinical guidelines directed to specific therapies such as Choosing Wisely Australia64 and organ allocation policies65 Legislation and training modules and education programs for doctors were also excluded as these are distinct from policies

B Stage 2 Data CollectionAs a starting point we identified the bodies that would be likely to have policy on end-of-life care including Australian peak medical bodies and medical colleges and national State and Territory governments AC did an initial review which EC revisited and updated in 201966 For the more recent review EC searched the relevant bodiesrsquo websites using a range of terms including ldquofutile treatmentrdquo ldquofutilityrdquo ldquonon-beneficial treatmentrdquo ldquoinappropriate treatmentrdquo ldquowithholdrdquo ldquowithdrawrdquo ldquotreatment limitationrdquo ldquoend of life and policy or guidelinerdquo ldquoresuscitationrdquo ldquogoals of carerdquo ldquodispute or conflictrdquo EC also examined the professional guidelines and resources sections of all 15 Australian specialist medical colleges67 and searched the health department websites for each Australian State and Territory

60 We developed this from the definition of ldquoinstitutional policyrdquo in Goodridge n 21 1166 ldquodeclarations of the organizationsrsquo deeply held values hellip instructing employees on how to conduct business in a legal ethical and safe mannerrdquo61 Survey methodology is usually required to locate institutional policies See eg J Lemiengre et al ldquoInstitutional Ethics Policies on Medical End-of-Life Decisions A Literature Reviewrdquo (2007) 83(2) Health Policy 13162 See eg Palliative Care Australia National Palliative Care Standards (5th ed 2018) lthttppalliativecareorgauwp-contentuploadsdlm_uploads201811PalliativeCare-National-Standards-2018_Nov-webpdfgt63 See eg The Clinical Technical and Ethical Principal Committee of the Australian Health Ministersrsquo Advisory Council A National Framework for Advance Care Directives (Australian Health Ministers Advisory Council 2011) lthttpwwwcoaghealthcouncilgovauPortals0A20National20Framework20for20Advance20Care20Directives_September202011pdfgt Queensland Government Department of Health Advance Care Planning Clinical Guidelines (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0037688618acp-guidelinespdfgt64 See eg Choosing Wisely Australia The Royal Australian College of General Practitioners Tests Treatments and Procedures Clinicians and Consumers Should Question (NPS MedicineWise 2015ndash2016) lthttpwwwchoosingwiselyorgaurecommendationsracgpgt65 See eg The Transplantation Society of Australia and New Zealand Clinical Guidelines for Organ Transplantation from Deceased Donors (2019) lthttpswwwtsanzcomauTSANZ_Clinical_Guidelines_Version2013[6986]pdfgt National Health and Medical Research Council Ethical Guidelines for Organ Transplantation from Deceased Donors (2016) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-organ-transplantation-deceased-donorsgt66 Results of the review are current as of 1 November 201967 Australian Health Practitioner Regulation Agency Approved Programs of Study (AHPRA amp National Boards) lthttpswwwahpragovaueducationapproved-programs-of-studyaspxref=medical20practitioneramptype=specialistgt The colleges are the Australasian College for Emergency Medicine (ACEM) the Australasian College of Dermatologists (ACD) the Australasian College of Sport and Exercise Physicians (ACSEP) the Australia and New Zealand College of Anaesthetists (ANZCA) the

Close Parker Willmott White and Crowden

422 (2019) 27 JLM 415

The above terms were also queried using the Google search engine and in MEDLINEPUBMED and Scopus academic databases in combination with the term ldquoAustraliardquo

C Stage 3 Data Coding and OrganisationBased on the initial searches EC created a database of documents that potentially met the inclusion criteria EC and MP reviewed and discussed all documents that did not clearly meet the inclusion criteria and arrived at a final list of policies to include in this review which all authors agreed on These were assigned to one of three groups

bull Category 1 Commonwealth government documentsbull Category 2 StateTerritory government documents andbull Category 3 Professional organisation documents

Documents were grouped into these categories to facilitate ease of comparison across documents by similar authors and to more easily identify which policies would apply to a given doctor in a specific specialty in a specific jurisdiction For example while the Category 1 policies would in theory apply to all doctors across Australia an intensive care doctor working in Queensland would be subject to only the Queensland documents from Category 2 and the relevant professional organisation documents in Category 3

D Stage 4 Data AnalysisOnce the list of policies was settled EC uploaded them into NVivo 12 (QSR International Pty Ltd 2018) and developed a list of initial codes which formed the basis for the protocol EC coded the policies by comparing and contrasting key differences between the policies and between the categories68 EC also developed Excel matrices to summarise the policies and facilitate comparisons of how futility was defined and guidance given about the decision-making process69

E Stage 5 ReportStage 5 of Altheidersquos method is synthesising and interpreting the results which is set out in the next two parts

V RESULTS

The results are grouped into three main themes (1) the scope and source of medical futility policies in Australia (2) terminology used to describe futility or a like concept and (3) the extent of guidance about the decision-making process and dispute resolution

A Scope and Source of Australian Medical Futility PoliciesAcross Australia we located 23 policies that met the inclusion criteria (Table 1) Ten policies were from State and Territory governments (Category 2) Another ten policies were from professional organisations (Category 3) with five of these from national medical associations and societies (Category 3a) and five from medical colleges (Category 3b) There were three relevant policies issued by the Commonwealth Government (Category 1)

Australian College of Rural and Remote Medicine (ACRRM) the College of Intensive Care Medicine of Australia and New Zealand (CICM) the Royal Australasian College of Medical Administrators (RACMA) the Royal Australasian College of Obstetricians amp Gynaecologists (RANZCOG) the Royal Australasian College of Physicians (RACP) the Royal Australasian College of Surgeons (RACS) the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) Royal Australian and New Zealand College of Psychiatrists (RANZCP) the Royal Australian and New Zealand College of Radiologists (RANZCR) the Royal Australian College of General Practitioners (RACGP) and the Royal College of Pathologists of Australia (RCPA)68 DL Altheide and CJ Schneider ldquoProcess of Qualitative Document Analysisrdquo in Qualitative Media Analysis (SAGE Publications 2nd ed 2013)69 M Miles M Huberman and J Saldantildea Qualitative Data Analysis A Methods Sourcebook (SAGE Publications 3rd ed 2014)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 423

TABLE 1 Current Australian Policies That Address Decision Making about Withholding or Withdrawing Life-sustaining Treatment andor Futile Treatment at the End of Life

Source Name of Document (Year) Brief Description

Category 1 ndash Commonwealth Government

Australian Commission on Safety and Quality in Health Care

National Consensus Statement Essential Elements for Safe and High-Quality End-of-Life Care (2015)A

40-page document setting out suggested practice for end-of-life care in acute settings including guiding principles and corresponding actions

Medical Board of Australia

Good Medical Practice A Code of Conduct for Doctors in Australia (2014)B

25-page code setting out the standards of professional and ethical conduct for all registered doctors in Australia Section 312 is dedicated to end-of-life care

National Health and Medical Research Council

Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)C

66-page ethical framework to guide decision-making for persons in post-coma unresponsiveness (PCU) or a minimally responsive state

Category 2 ndash State and Territory Governments

New South Wales Government Department of Health

End-of-Life Care and Decision-Making ndash Guidelines (2005)D

17-page document setting out a process for reaching end-of-life decisions Includes principles and recommendations for shared decision-making

Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010)E

56-page report providing recommendations for how to navigate end-of-life conflicts in the hospital setting

Using Resuscitation Plans in End of Life Decisions (2014)F

21-page policy directive describing the standards and principles for the use of resuscitation plans (orders to use or withhold resuscitation measures) in patients 29 days and older

Queensland Government Department of Health

End-of-Life Care Guidelines for Decision-Making About Withholding and Withdrawing Life-Sustaining Measures from Adult Patients (2018)G

176-page reference document intended to support health professionals administrators policy-makers decision-managers who are involved in decision-making about life-sustaining measures

South Australia Government Department of Health

Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (2014)H

33-page policy directive directed at assisting health professionals to meet their legal obligations when providing medical assessment or treatment to patients who cannot consent due to a lack of voluntariness communication difficulties or impaired decision-making capacity

Consent to Medical Treatment and Health Care Policy Guideline (2014)I

39-page policy guideline aimed at providing guidance in meeting legislative requirements under guardianship and health care consent legislation including avenues for dispute resolution

Resuscitation Planning ndash 7 Step Pathway (2016)J

25-page policy directive aimed at health professionals and consumers that sets out a transparent process to make and document decisions about resuscitation and other life-sustaining treatments

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 9: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Close Parker Willmott White and Crowden

422 (2019) 27 JLM 415

The above terms were also queried using the Google search engine and in MEDLINEPUBMED and Scopus academic databases in combination with the term ldquoAustraliardquo

C Stage 3 Data Coding and OrganisationBased on the initial searches EC created a database of documents that potentially met the inclusion criteria EC and MP reviewed and discussed all documents that did not clearly meet the inclusion criteria and arrived at a final list of policies to include in this review which all authors agreed on These were assigned to one of three groups

bull Category 1 Commonwealth government documentsbull Category 2 StateTerritory government documents andbull Category 3 Professional organisation documents

Documents were grouped into these categories to facilitate ease of comparison across documents by similar authors and to more easily identify which policies would apply to a given doctor in a specific specialty in a specific jurisdiction For example while the Category 1 policies would in theory apply to all doctors across Australia an intensive care doctor working in Queensland would be subject to only the Queensland documents from Category 2 and the relevant professional organisation documents in Category 3

D Stage 4 Data AnalysisOnce the list of policies was settled EC uploaded them into NVivo 12 (QSR International Pty Ltd 2018) and developed a list of initial codes which formed the basis for the protocol EC coded the policies by comparing and contrasting key differences between the policies and between the categories68 EC also developed Excel matrices to summarise the policies and facilitate comparisons of how futility was defined and guidance given about the decision-making process69

E Stage 5 ReportStage 5 of Altheidersquos method is synthesising and interpreting the results which is set out in the next two parts

V RESULTS

The results are grouped into three main themes (1) the scope and source of medical futility policies in Australia (2) terminology used to describe futility or a like concept and (3) the extent of guidance about the decision-making process and dispute resolution

A Scope and Source of Australian Medical Futility PoliciesAcross Australia we located 23 policies that met the inclusion criteria (Table 1) Ten policies were from State and Territory governments (Category 2) Another ten policies were from professional organisations (Category 3) with five of these from national medical associations and societies (Category 3a) and five from medical colleges (Category 3b) There were three relevant policies issued by the Commonwealth Government (Category 1)

Australian College of Rural and Remote Medicine (ACRRM) the College of Intensive Care Medicine of Australia and New Zealand (CICM) the Royal Australasian College of Medical Administrators (RACMA) the Royal Australasian College of Obstetricians amp Gynaecologists (RANZCOG) the Royal Australasian College of Physicians (RACP) the Royal Australasian College of Surgeons (RACS) the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) Royal Australian and New Zealand College of Psychiatrists (RANZCP) the Royal Australian and New Zealand College of Radiologists (RANZCR) the Royal Australian College of General Practitioners (RACGP) and the Royal College of Pathologists of Australia (RCPA)68 DL Altheide and CJ Schneider ldquoProcess of Qualitative Document Analysisrdquo in Qualitative Media Analysis (SAGE Publications 2nd ed 2013)69 M Miles M Huberman and J Saldantildea Qualitative Data Analysis A Methods Sourcebook (SAGE Publications 3rd ed 2014)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 423

TABLE 1 Current Australian Policies That Address Decision Making about Withholding or Withdrawing Life-sustaining Treatment andor Futile Treatment at the End of Life

Source Name of Document (Year) Brief Description

Category 1 ndash Commonwealth Government

Australian Commission on Safety and Quality in Health Care

National Consensus Statement Essential Elements for Safe and High-Quality End-of-Life Care (2015)A

40-page document setting out suggested practice for end-of-life care in acute settings including guiding principles and corresponding actions

Medical Board of Australia

Good Medical Practice A Code of Conduct for Doctors in Australia (2014)B

25-page code setting out the standards of professional and ethical conduct for all registered doctors in Australia Section 312 is dedicated to end-of-life care

National Health and Medical Research Council

Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)C

66-page ethical framework to guide decision-making for persons in post-coma unresponsiveness (PCU) or a minimally responsive state

Category 2 ndash State and Territory Governments

New South Wales Government Department of Health

End-of-Life Care and Decision-Making ndash Guidelines (2005)D

17-page document setting out a process for reaching end-of-life decisions Includes principles and recommendations for shared decision-making

Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010)E

56-page report providing recommendations for how to navigate end-of-life conflicts in the hospital setting

Using Resuscitation Plans in End of Life Decisions (2014)F

21-page policy directive describing the standards and principles for the use of resuscitation plans (orders to use or withhold resuscitation measures) in patients 29 days and older

Queensland Government Department of Health

End-of-Life Care Guidelines for Decision-Making About Withholding and Withdrawing Life-Sustaining Measures from Adult Patients (2018)G

176-page reference document intended to support health professionals administrators policy-makers decision-managers who are involved in decision-making about life-sustaining measures

South Australia Government Department of Health

Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (2014)H

33-page policy directive directed at assisting health professionals to meet their legal obligations when providing medical assessment or treatment to patients who cannot consent due to a lack of voluntariness communication difficulties or impaired decision-making capacity

Consent to Medical Treatment and Health Care Policy Guideline (2014)I

39-page policy guideline aimed at providing guidance in meeting legislative requirements under guardianship and health care consent legislation including avenues for dispute resolution

Resuscitation Planning ndash 7 Step Pathway (2016)J

25-page policy directive aimed at health professionals and consumers that sets out a transparent process to make and document decisions about resuscitation and other life-sustaining treatments

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 10: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 423

TABLE 1 Current Australian Policies That Address Decision Making about Withholding or Withdrawing Life-sustaining Treatment andor Futile Treatment at the End of Life

Source Name of Document (Year) Brief Description

Category 1 ndash Commonwealth Government

Australian Commission on Safety and Quality in Health Care

National Consensus Statement Essential Elements for Safe and High-Quality End-of-Life Care (2015)A

40-page document setting out suggested practice for end-of-life care in acute settings including guiding principles and corresponding actions

Medical Board of Australia

Good Medical Practice A Code of Conduct for Doctors in Australia (2014)B

25-page code setting out the standards of professional and ethical conduct for all registered doctors in Australia Section 312 is dedicated to end-of-life care

National Health and Medical Research Council

Ethical Guidelines for the Care of People in Post-Coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008)C

66-page ethical framework to guide decision-making for persons in post-coma unresponsiveness (PCU) or a minimally responsive state

Category 2 ndash State and Territory Governments

New South Wales Government Department of Health

End-of-Life Care and Decision-Making ndash Guidelines (2005)D

17-page document setting out a process for reaching end-of-life decisions Includes principles and recommendations for shared decision-making

Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010)E

56-page report providing recommendations for how to navigate end-of-life conflicts in the hospital setting

Using Resuscitation Plans in End of Life Decisions (2014)F

21-page policy directive describing the standards and principles for the use of resuscitation plans (orders to use or withhold resuscitation measures) in patients 29 days and older

Queensland Government Department of Health

End-of-Life Care Guidelines for Decision-Making About Withholding and Withdrawing Life-Sustaining Measures from Adult Patients (2018)G

176-page reference document intended to support health professionals administrators policy-makers decision-managers who are involved in decision-making about life-sustaining measures

South Australia Government Department of Health

Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (2014)H

33-page policy directive directed at assisting health professionals to meet their legal obligations when providing medical assessment or treatment to patients who cannot consent due to a lack of voluntariness communication difficulties or impaired decision-making capacity

Consent to Medical Treatment and Health Care Policy Guideline (2014)I

39-page policy guideline aimed at providing guidance in meeting legislative requirements under guardianship and health care consent legislation including avenues for dispute resolution

Resuscitation Planning ndash 7 Step Pathway (2016)J

25-page policy directive aimed at health professionals and consumers that sets out a transparent process to make and document decisions about resuscitation and other life-sustaining treatments

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 11: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Close Parker Willmott White and Crowden

424 (2019) 27 JLM 415

Source Name of Document (Year) Brief Description

Tasmanian Government Department of Health

Medical Goals of Care PlanK

A State-wide initiative aimed to ensure patients who are unlikely to benefit from curative treatment receive appropriate care Includes links to ldquoPrinciples ndash Medical Goals of Carerdquo and ldquoGuidance Notes ndash Completion of Medical Goals of Care Planrdquo

Victorian Government Department of Health

A Guide to the Medical Treatment Planning and Decisions Act 2016 for Health PractitionersL

26-page guidance about the Medical Treatment Planning and Decisions Act 2016 (Vic) a framework for decision-making for persons who lack decision-making capacity

Western Australia Government Department of Health

The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-Of-Life in Western AustraliaM

20-page framework for end-of-life care in Western Australia intended to provide guidance to clinicians Includes a section on responding to clinical deterioration and addresses conversations about goals of care

Category 3 ndash Professional Organisations

Category 3a ndash National Medical Associations and Societies

Australian Medical Association

Position Statement on End of Life Care and Advance Care Planning (2014)N

10-page position statement setting out policy across a number of end-of-life care considerations including withholding and withdrawing life-sustaining treatment advance care planning and palliative care

Code of Ethics (2004 editorially revised 2006 revised 2016)O

7-page code of ethics intended to complement the MBA code of conduct for doctors The Code sets out the ethical standards expected of the medical profession

The Doctorrsquos Role in Stewardship of Health Care Resources (2016)P

3-page position statement setting out principles for the appropriate management of health care resources The statement includes a section on ldquounwanted tests treatments and proceduresrdquo which addresses treatment that is not medically beneficial

Australian Resuscitation Council and New Zealand Resuscitation Council (ANZCOR)

Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015)Q

14-page guideline intended for first-aiders first-responders and health professionals Addresses legal and ethical issues surrounding resuscitation

Australian and New Zealand Intensive Care Society (ANZICS)

Statement on Care And Decision-Making at the End For Life for the Critically Ill (2014)R

148-page statement intended to support intensive care staff who care for critically ill patients The statement provides a framework for best practice for caring for patients at the end of life in Australia and New Zealand

Category 3b ndash Medical Colleges

Australasian College for Emergency Medicine (ACEM)

Policy on End of Life and Palliative Care in the Emergency Department (2016)S

8-page document aimed at supporting health professionals in the emergency department It also aims to encourage emergency departments to implement systems and processes to recognise and respond to patients at the end of life

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 12: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 425

Source Name of Document (Year) Brief Description

Australian College of Rural and Remote Medicine (ACRRM)

Position Statement ndash Rural End of Life Care and Advance Care Planning (2015)T

4-page document setting out principles for doctors working in rural settings to provide optimal end-of-life care tailored to patientsrsquo wishes

College of Intensive Care Medicine of Australia and New Zealand (CICM)

Statement on Withholding and Withdrawing Treatment (IC-14) (2003 last reviewed in 2013)U

3-page document setting out 14 principles related to withholding and withdrawing life-sustaining treatment

Royal Australasian College of Physicians (RACP)

Improving Care at the End of Life Our Roles and Responsibilities (2016)V

57-page document providing recommendations for quality patient-centred end-of-life care

Royal Australasian College of Surgeons (RACS)

Position Paper ndash End of Life Care (2016)W

3-page document describing the RACS position on palliative care informed choice and low efficacy procedures and advance care planning in the surgical context

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgt (MBA Code) The MBA Code originated as a document drafted by the Australian Medical Council the national accreditation body for the medical professional The Code was then adopted and subsequently updated by the Medical Board of Australia (MBA) We have included the MBA in Category 1 since it is supported by the Australian Health Practitioner Regulation Agency a statutory body of the Commonwealth Government The Code is issued under Health Practitioner Regulation National Law Act 2009 (Cth) s 39 which states ldquoA National Board may develop and approve codes and guidelines ndash (a) to provide guidance to health practitioners it registersrdquoC National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report) While CRELS Report notes it ldquois not a guideline but rather a blueprint that outlines areas warranting further investigation strengthened practice or new initiatives required to meet that goalrdquo we have included this document in this review since it fits our broad definition of ldquopolicyrdquo set out in Part IVF New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtG Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt This resource also includes two companion ldquoshort formrdquo resources listed on the Queensland Health website which we have analysed with the guidelines as a whole since they are included as an appendix For stand-alone resources see Withholding and Withdrawing Life-sustaining Measures Legal Considerations for Adult Patients lthttpswwwhealthqldgovau__dataassetspdf_file0038688268measures-legalpdfgt Flowcharts for Providing Health Care and WithholdingWithdrawing Life-sustaining Measures lthttpswwwhealthqldgovau__dataassetspdf_file0036688266wwlsm-flowchartspdfgtH South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+Content

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 13: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Close Parker Willmott White and Crowden

426 (2019) 27 JLM 415

SA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegtI South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgtJ South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgt The URL includes several short companion resources to this policyK Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtL Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtM Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-FrameworkpdfgtN Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtO Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtP Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtQ Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) lthttpsresusorgauguidelinesgtR Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtS Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgtT Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtU This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policyV Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtW Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

There is not scope in this article to address the background of each of these policies in detail but we acknowledge their provenance potentially influences their regulatory force and legitimacy70 However there are a few points to note about the overall policy environment

First the length scope and purpose of existing guidelines varies widely some documents being short position statements (eg the AMA End-of-Life Statement) others longer more comprehensive end-of-life decision-making guidelines (eg the Queensland Health Guidelines the ANZICS Statement) and others broad codes of conduct not specific to end-of-life care (eg the MBA Code and the AMA Code) (Table 1) Notably with the exception of the ANZICS Statement and the RACP Statement the majority of professional organisation statements (Category 3) are much shorter than the documents in Categories 1 and 2

A second aspect to note is that State and Territory governments have variable approaches to policies specific to withholding or withdrawing life-sustaining treatment New South Wales and Queensland have

70 McDonald n 17

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 14: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 427

policy documents dedicated to making decisions about life-sustaining treatment (Table 1) In contrast the policies from the Australian Capital Territory (ACT) Victoria and Tasmania are narrower These jurisdictions have adopted a ldquogoals of carerdquo framework an approach intended to reduce futile treatment71 but do not have a document focused on the ethical challenges of decisions to forgo treatment Western Australia also references goals of care in its broad end-of-life framework but the document is high-level and does not provide additional guidance about withholding and withdrawing life-sustaining treatment South Australia has several discrete policies about withholding resuscitation and implementing legal obligations when providing treatment to patients with and without capacity but has no single policy on decision-making about life-sustaining treatment There were no relevant documents on the ACT or Northern Territory government or health department websites

The third attribute of the Australian non-institutional futility policy environment is that most professional organisations from specialties that make end-of-life decisions now have a dedicated end-of-life policy Five of the fifteen specialist medical colleges in Australia have a document focused on end-of-life decision-making (Table 1)72 Several of these were issued or updated in the last five years with the Australasian College for Emergency Medicine (ACEM) the Australian College of Rural and Remote Medicine (ACRRM) the Royal Australasian College of Physicians (RACP) and the Royal Australasian College of Surgeons (RACS) all issuing new statements in 2015 or 2016 The most comprehensive of the professional organisation documents is from the Australian and New Zealand Intensive Care Society (ANZICS)73 which is unsurprising given that many ethical dilemmas in relation to decisions to withhold or withdraw life-sustaining treatment arise in the ICU for patients who lack capacity

B TerminologyThe first domain we examined was the terminology used as a criterion for withholding or withdrawing life-sustaining treatment Overall some Australian medical policies appear to follow the trend in the bioethical literature by phasing out the term ldquofutilerdquo however this is not universal and the term is still retained even in recently published documents Across all categories the policy documents employ inconsistent terminology with some policies retaining the language of ldquofutilityrdquo and some moving away from the term

1 Policies That Use the Label ldquoFutile Treatmentrdquo

Nearly one-third of the policies (7 out of 23) use the term ldquofutile treatmentrdquo The policies use similar definitions centred on patient benefit (eg ldquono benefitrdquo or weighing benefits versus burdens) with some subtle differences (Table 2) For example a few statements define futility narrowly (produces no benefit74) while others frame it somewhat more broadly for example incorporating quantitative assessments about the treatmentrsquos potential effect (ldquopotentially affords no benefitrdquo75) The former phrase is more categorical while the latter is a probabilistic prognostic statement with more scope for differing assessments This is a small but important distinction and if taken literally potentially provides scope for

71 The Goals of Care approach is influenced by Physician Orders for Life Sustaining Treatment widely used in the United States See RL Thomas et al ldquoGoals of Care A Clinical Framework for Limitation of Medical Treatmentrdquo (2014) 201(8) Med J Aust 45272 The remaining 10 colleges have no current publicly available policy statements or guidance documents on end-of-life decisions for adult patients This finding was mostly expected since aside from the Australia and New Zealand College of Anaesthetists (ANZCA) (which recently withdrew its end-of-life policy) and the Royal Australian College of General Practitioners (RACGP) none of these colleges deal with patients at the end of life as part of their core practice73 Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt (ANZICS Statement)74 National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35 lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgt (NHMRC Guidelines) [emphasis added] See also Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gt (AMA End-of-Life Statement)75 Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt (Queensland Health Guidelines) [emphasis added]

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 15: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Close Parker Willmott White and Crowden

428 (2019) 27 JLM 415

reasonable disagreement in practice This is especially the case when there is no clear process set out for how to operationalise the definition

TABLE 2 Australian Policies Addressing Withholding or Withdrawing Treatment That Use ldquoFutilerdquo

Policy Definition of Futility

Category 1 ndash Commonwealth Government

NHMRC Guidelines

ldquoIt is always necessary to consider whether a treatment or intervention may be overly burdensome or futile hellip Overly burdensome treatment is distinct from a level of care for health and life that carers may be regarded as obliged to provide hellip Treatment is futile only if it produces no benefit to the patient (ie does not slow down the progress of disease sustain the patientrsquos life reduce disability and improve health or relieve the patientrsquos distress or discomfort)rdquoA

Category 2 ndash State and Territory Governments

CRELS Report (NSW)

ldquoThe term lsquofutilersquo treatment is used in clinical practice despite its persisting ambiguity in medical ethics literature There remains ongoing debate about what constitutes futile treatment hellip A more inclusive approach is needed to explore divergent views between treating professionals and a family where arguably lsquofutilersquo treatment is at issue in an EOL [end-of-life] conflictrdquoB

Queensland Health Guidelines

Futile treatment is ldquomedical treatment that potentially affords no benefit and would cause the patient harmrdquoC The Guidelines also endorse the definition in the AMA End-of-Life Statement (see below)D

SA Resuscitation Planning Policy

ldquoIt is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations andor treatments that can be of no benefitrdquoE

ldquoFutilerdquo is not defined but later the policy quotes the Consent Act 1995 (SA) stating that a medical practitioner hellip ldquois under no duty to use or to continue to use life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patientrsquos representative has requested that such measures be used or continued)rdquoF

Category 3 ndash Professional Organisations

AMA End-of-Life Statement

ldquoFutile Treatment ndash Treatment that no longer provides a benefit to a patient or the burdens of providing the treatment outweigh the benefits hellip In end of life care medically futile treatment can be considered to be treatment that gives no or an extremely small chance of meaningful prolongation of survival and at best can only briefly delay the inevitable death of the patientrdquoG

Australian Resuscitation Council Guideline

No definition provided ldquoAlthough healthcare personnel are under no obligation to inform offer or provide treatment considered to be futile to a victim the reasons for such should be documented in the victimrsquos clinical recordrdquoH

RACS Position Paper

No definition provided ldquoJudging whether an intervention will be futile or of little benefit to the patient is often uncertain and hellip difficult hellip [which] can be compounded where there are differing views regarding the benefits of an intervention or where there are cultural differences contributing to misunderstandingrdquoI

A National Health and Medical Research Council Ethical Guidelines for the Care of People in Post-coma Unresponsiveness (Vegetative State) or a Minimally Responsive State (2008) 35lthttpswwwnhmrcgovauabout-uspublicationsethical-guidelines-care-people-post-coma-unresponsivenessgtB New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 25lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgtC Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 5 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 16: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 429

D Queensland Government Department of Health End-of-Life Care Guidelines for Decision-making about Withholding and Withdrawing Life-sustaining Measures from Adult Patients (Queensland Health 2018) 41 lthttpswwwhealthqldgovau__dataassetspdf_file0033688263acp-guidancepdfgtE South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 4 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtF South Australia Government Department of Health Resuscitation Planning ndash 7 Step Pathway (SA Health 2016) 12 lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsresuscitation+plan+7+step+pathway+for+health+professionalsgtG Australian Medical Association Position Statement on End of Life Care and Advance Care Planning (2014) 3 5 lthttpsamacomauposition-statementend-life-care-and-advance-care-planning-2014gtH Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgtI Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt

Notably with the exception of the NHMRC Guidelines none of the policies draw the distinction in the Multi-Society Statement between physiologically futile treatment and treatment that involves a value judgment The NHMRC Guidelines distinguish between ldquofutilerdquo and ldquooverly burdensomerdquo treatment and note that the word ldquofutilerdquo is ambiguous and ldquomay in fact obscure rather than clarify the nature of the decision being maderdquo76 Consequently the statement limits the word ldquofutilerdquo to its dictionary definition ldquoincapable of producing any result ineffective useless not successfulrdquo stating

[t]reatment is futile only if it produces no benefit hellip In contrast ldquooverly burdensome treatmentrdquo is informed by the patientrsquos and familyrsquos particular circumstances their experience of illness and its remedies and their culture beliefs and preferences77

Arguably even this definition falls short of distinguishing physiological futility since something that produces ldquono benefitrdquo still requires a value judgment as to what counts as a benefit (versus a physiologically futile treatment that has no effect)

Several statements use the term ldquofutilerdquo without defining it For example the Australian Resuscitation Council Guideline does not define futility despite indicating health care personnel are ldquounder no obligation to inform offer or provide treatment considered to be futile to a victimrdquo78 While this statement broadly reflects the law in relation to withdrawing or withholding treatment in acute emergencies in Australia79 it does not indicate how a first responder is to make the determination of futility in practice

Other statements acknowledge that futility is used to make assessments that are value-laden including the NHMRC Guidelines the CRELS Report the Queensland Health Guidelines and the RACS Position Paper80 Other policies briefly address this but could go further in recognising it For example while the AMA End-of-Life Statement defines futility81 it does not mention (at least in this part) that the values of

76 NHMRC Guidelines n 74 3577 NHMRC Guidelines n 74 3578 Australian Resuscitation Council and New Zealand Resuscitation Council Guideline 105 ndash Legal and Ethical Issues Related to Resuscitation (2015) 13 lthttpsresusorgauguidelinesgt79 See generally L Willmott B White and SN Then ldquoWithholding and Withdrawing Life-sustaining Medical Treatmentrdquo in B White F McDonald and L Willmott (eds) Health Law in Australia (Lawbook 3rd ed 2018) 607ndash60880 For example the RACS Position Paper explains futility is an uncertain culturally influenced value-dependent concept and subject to interpretation Royal Australasian College of Surgeons Position Paper ndash End of Life Care (2016) 2 lthttpsumbracosurgeonsorgmedia16422017-07-28_pos_fes-pst-057_end_of_life_carepdfgt (RACS Position Paper) The Queensland Health Guidelines explain that futility ldquoshould not be seen as offering a value-free point of clinical closurerdquo but should be a trigger to re-evaluate goals of treatment and strengthen communication n 75 4281 Note that the AMA End-of-Life Statement was issued in 2014 but in the most recent iteration of the AMA Code (Australian Medical Association Code of Ethics (2016) lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gt) revised in 2016 the AMA has dropped the term ldquofutilerdquo in favour of the phrase ldquoof no medical benefitrdquo This could indicate the word ldquofutilerdquo will also be removed from the next version of its end-of-life policy

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 17: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Close Parker Willmott White and Crowden

430 (2019) 27 JLM 415

the patient substitute decision-maker or doctor could influence decisions The Statement does instruct doctors to ldquodiscuss their reasons for determining a treatment to be medically futile with the patient (andor the SDM [substitute decision-maker] hellip before coming to a decisionrdquo82 but the phrase ldquodiscuss their reasonsrdquo [emphasis added] is framed from the doctorrsquos perspective and does not explicitly encourage the doctor to explore the other stakeholdersrsquo views

The advantage of the approach in the Multi-Society Statement which none of the Australian policies fully reflect is that limiting the word ldquofutilerdquo to physiological futility carves out a narrow category of cases that is solely within the doctorrsquos discretion The existing policies that retain the word ldquofutilerdquo even those that acknowledge decisions about life-sustaining treatment are value-laden fail to capture this important distinction

2 Policies That Use Language Other Than ldquoFutile Treatmentrdquo

Thirteen policies use terminology other than ldquofutile treatmentrdquo83 In place of ldquofutilerdquo the majority discuss patient benefit either describing weighing benefits and burdens or directing doctors to refrain from providing ldquonon-beneficialrdquo treatment or treatment that is of ldquonegligible benefitrdquo or ldquono benefitrdquo Other terms include treatment that is ldquonot in the personrsquos best interestsrdquo ldquoineffective therapyrdquo ldquoinappropriate treatmentrdquo or the somewhat ambiguous phrase ldquolimits of medicinerdquo (Table 3)

TABLE 3 Australian Policies That Address Withholding or Withdrawing Treatment That Use Terminology Other Than ldquoFutilerdquo

Policy Term Used Definition

Category 1 ndash Commonwealth Government

National Consensus Statement

Non-beneficial treatment

ldquoInterventions that will not be effective in treating a patientrsquos medical condition or improving their quality of life hellip Non-beneficial treatment is sometimes referred to as futile treatment but this is not a preferred termrdquoA

MBA Code Limits of medicine

ldquo[G]ood medical practice involves 3123 Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient 3124 Understanding that you do not have a duty to try to prolong life at all cost However you do have a duty to know when not to initiate and when to cease attempts at prolonging life while ensuring that your patients receive appropriate relief from distressrdquoB

Category 2 ndash State and Territory Governments

NSW End-of-Life Guidelines

Negligible prospect of benefit Inappropriate requests for continuing treatment

ldquoHealth professionals are under no obligation to provide treatments that hellip are unreasonable in particular those that offer negligible prospect of benefitrdquoC ldquoAt times a family or a patient requests a test or intervention that appears unreasonable or inappropriate hellip where the patientrsquos condition continues to deteriorate hellip where the treatment would not be successful in producing the clinical effect hellip [or] where the treatment might successfully produce a clinical effect but still fail to serve important patient goals such as independence from life-support devices survival in order to leave hospital or improvement from permanent unconsciousnessrdquoD

82 AMA End-of-Life Statement n 74 583 Note that three policies do not discuss futility or a like concept South Australia Government Department of Health Consent to Medical Treatment and Health Care Policy Guideline (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectpublic+contentsa+health+internetclinical+resourcesclinical+topicsend+of+life+for+health+professionalsconsent+to+medical+treatment+for+health+professionalsgt South Australia Government Department of Health Providing Medical Assessment andor Treatment Where Patient Consent Cannot Be Obtained Policy Directive (SA Health 2014) lthttpswwwsahealthsagovauwpswcmconnectPublic+ContentSA+Health+InternetHealth+topicsHealth+conditions+prevention+and+treatmentEnd+of+lifegt Western Australia Government Department of Health The End-of-Life Framework A Statewide Model for the Provision of Comprehensive Coordinated Care at End-of-Life in Western Australia (WA Health 2016) lthttpsww2healthwagovau~mediaFilesCorporategeneral20documentsEnd20of20LifePDFThe-End-of-Life-Frameworkpdfgt (WA End-of-Life Framework)

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 18: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 431

Policy Term Used Definition

NSW Health Resuscitation Plan Policy

Negligible benefit Burdens versus benefits

CPR should not be instituted if it is of ldquonegligible benefitrdquo in other words where it ldquooffers no benefit or where the benefits are small and overwhelmed by the burden to the patient hellip Given that judgments about the benefits of otherwise of a therapy ultimately reflect the values beliefs and hopesgoals of the patient any decision to withhold resuscitation on clinical grounds alone must be carefully considered properly justified and documentedrdquoE

Tasmanian Goals of Care Plan

Greater risk of complications than benefits Treatment will not significantly prolong life or improve quality of life

ldquo[L]imitation of treatment should be considered [when] hellip medical treatment aimed at life prolongation will neither significantly prolong life expectancy nor improve the quality of life hellip therapy carries a greater risk of complications than possible benefits hellip [or when the patient or substitute decision maker or Advance Care Directive] states that they do not wish to have certain or all life prolonging treatmentrdquoF

Victorian Guide to the MTPD

Clinically indicated ldquo[U]p to the health practitioner to determine whether treatment is clinically indicatedrdquoG

Category 3 ndash Professional Organisations

AMA Code No medical benefitldquoWhere a patientrsquos death is deemed to be imminent and where curative or life-prolonging treatment appears to be of no medical benefit try to ensure that death occurs with comfort and dignityrdquoH

AMA Stewardship Statement

Not medically beneficial or clinically appropriate

ldquo[I]t is important for the doctor to elicit the patientrsquos values and goals of care (this is particularly relevant to end of life care) hellip It is also important for doctors to ensure patientsrsquo expectations of care are realistic and that they understand the appropriateness (or not) of recommending certain tests treatments and procedures Doctors are not required to offer treatment options they consider neither medically beneficial nor clinically appropriaterdquoI

ACCRM Statement

Aggressive treatments that the person might not have wanted

ldquoDoctors are legally and ethically bound to make decisions based on the best interests of the patient This can mean aggressive treatments that the person might not have wanted Sadly it is now possible for people to be kept alive under circumstances that may cause unnecessary suffering and may be contrary to their wishesrdquoJ

ACEM Policy No medical benefit Uses definition from the National Consensus Statement see Category 1 above

RACP Statement

Benefits versus harms Inappropriate treatment Potentially harmful treatment

ldquoWithholding or withdrawing treatments hellip not benefiting the patient physicians have a duty to consider the benefits and harms of any treatments hellip before instituting them The benefits and harms of ongoing treatment should also be regularly reviewed They should not be provided if they are not offering benefit to the patientrdquoK ldquoKnowing when to withhold or limit treatment that is inappropriate or potentially harmful to the patient is a key component of good end-of-life carerdquoL

CICM StatementBenefits versus burdens Ineffective therapy

ldquoThe benefits of intensive care treatment include the prolongation of life and the minimisation of disability The potential benefits of treatment must be weighed against the burden which might include pain suffering and compromise of dignity In most situations assessment of the potential benefits and burdens of treatment is based on probability rather than certainty hellip There is no obligation to initiate therapy known to be ineffective nor to continue therapy that has become ineffectiverdquoM

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 19: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Close Parker Willmott White and Crowden

432 (2019) 27 JLM 415

Policy Term Used Definition

ANZICS Statement

Burdens versus benefits Not being beneficial not in best interests

ldquoThere is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefitsrdquoN ldquoUsing language that describes the treatment as lsquonot being beneficialrsquo lsquoover-burdensomersquo or lsquonot in the personrsquos best interestsrsquo [instead of lsquofutilersquo] enables clinicians to provide a clear message that the decision is about the effectiveness of the treatment not the personrsquos worthrdquoO

A Australian Commission on Safety and Quality in Health Care National Consensus Statement Essential Elements for Safe and High-quality End-of-Life Care (2015) 34 lthttpswwwsafetyandqualitygovauwp-contentuploads201505National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-carepdfgtB Medical Board of Australia Good Medical Practice A Code of Conduct for Doctors in Australia (2014) 11 lthttpswwwmedicalboardgovauCodes-Guidelines-PoliciesCode-of-conductaspxgtC New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 2 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtD New South Wales Health End-of-Life Care and Decision-making ndash Guidelines (2005) 9 lthttpswww1healthnswgovaupdsActivePDSDocumentsGL2005_057pdfgtE New South Wales Government Department of Health Using Resuscitation Plans in End of Life Decisions (PD2014_030) (NSW Health 2014) 4 lthttpswww1healthnswgovaupdsActivePDSDocumentsPD2014_030pdfgtF Tasmanian Government Department of Health Medical Goals of Care Plan (undated) Guidance Notes lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregtG Victorian Government Department of Health and Human Services A Guide to the Medical Treatment Planning and Decisions Act 2016 For Health Practitioners (2nd ed Victorian Government 2019) 9 lthttpswww2healthvicgovauhospitals-and-health-servicespatient-careend-of-life-careadvance-care-planningmedical-treatment-planning-and-decisions-actgtH Australian Medical Association Code of Ethics (2016) s 2114 lthttpsamacomauposition-statementcode-ethics-2004-editorially-revised-2006-revised-2016gtI Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) ss 222ndash223 lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gtJ Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggtK Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 6 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtL Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 15 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgtM This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy 1N Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 10 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgtO Australian and New Zealand Intensive Care Society Statement on Care and Decision-making at the End for Life for the Critically Ill (1st ed 2014) 44 lthttpswwwclinicalguidelinesgovauportal2434anzics-statement-care-and-decision-making-end-life-critically-illgt

Some documents simply substitute the term ldquofutilerdquo with ldquonon-beneficialrdquo For example in the most recent AMA Code the word ldquofutilerdquo which appeared in the previous edition84 was replaced with ldquoof no medical benefitrdquo

While eliminating the word ldquofutilerdquo avoids the risk that patients or substitute decision-makers could perceive this term pejoratively this technique is still potentially problematic since ldquobenefitrdquo is also highly normative Statements that include the term benefit without defining it suffer the same problem

84 See Australian Medical Association Code of Ethics (2006) s 14 lthttpsamacomautasama-code-ethics-2004- editorially-revised-2006gt

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 20: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 433

as futility these policies should state how benefit is defined and clarify either that they are referring to physiological futility or that that this is a value-dependent judgment which requires engagement with substitute decision-makers and patients

Three policies go further than simply replacing futility with another term and explicitly reject the term ldquofutilerdquo The National Consensus Statement and the ACEM Policy use ldquononbeneficial treatmentrdquo and state ldquofutile treatment hellip is not a preferred termrdquo85 However neither document explains why this is not a preferred term A better approach is to be found in the ANZICS Statement which provides clear reasons for rejecting the term ldquofutilerdquo including that it is ambiguous highly subjective hard to refute by the person or family and has negative connotations about the personrsquos worth86

Notably none of the statements using other terminology make the distinction drawn in the Multi-Society Statement between treatments that are physiologically futile (ie will have no effect) from those that are potentially inappropriate

C Guidance about the Decision-making Process and Dispute Resolution

The second substantive aspect we reviewed was the extent of guidance the policies provided about the decision-making process There were two main findings First a number of policies make broad statements that could be interpreted as authorising unilateral decisions Second while many policies provide some procedural strategies to facilitate shared decision-making very few endorse a set procedure including mechanisms for appeal in the event of a dispute Overall policies primarily focused on dispute prevention and there was insufficient policy guidance about dispute resolution

1 Extent to Which Policies Authorise Unilateral Decisions

A theme in many policies was that doctors are not obliged to provide futile or non-beneficial treatment with 10 out of 23 of the policies containing such a phrase Such statements broadly reflect the legal position in most Australian jurisdictions (except Queensland where consent is required to withhold or withdraw life-sustaining treatment from adults who lack capacity even if that treatment is considered futile or against good medical practice)87 However as we noted in the introduction policies can serve a variety of regulatory functions While one such function is to promote compliance with legal standards another is to step beyond the necessarily bare requirements of the law to promote a richer standard of high quality and safe care88 There is a gap between the basic legal proposition that doctors in most Australian jurisdictions are not required to provide treatment that they deem futile and how to achieve appropriate shared decision-making A problem with making these assertions in isolation is that these policy statements can obscure the evaluative nature of decisions to forgo treatment Rubin argues that this creates a ldquorisk of an extraordinary abuse of power as well-meaning health care professionals hellip make what are ultimately value decisions for their patients hellip not out of a lack of respect or caring for patients but because the underlying value assumptions hellip are not seen as such or called into questionrdquo89

A few of the policies provide statements that could be interpreted in isolation as supporting unilateral decision-making without adequate regard to the views of patients and substitute decision-makers For example the MBA Code states that doctors have a ldquoduty to know when not to initiate and when to

85 National Consensus Statement n 2 34 Australasian College for Emergency Medicine Policy on End of Life and Palliative Care in the Emergency Department (July 2016) 2lthttpsacemorgaugetmediad55cb8ce-2d26-49d5-823a-f7f07b5c19ccP455-PolicyonEoLandPalliativeCareinED-Jul16aspxgt (ACEM Policy)86 The ANZICS Statement n 73 128 defines futility as ldquothe inability of a treatment to achieve the goals of care As a concept futility is subjective and probably not particularly helpful in discussions with families and patientsrdquo87 See generally Willmott White and Then n 79 606ndash607 While a legal audit is beyond the scope of this article note that very few of the policies address the Queensland legal exception88 Parker and Braithwaite n 15 12389 SB Rubin ldquoIf We Think Itrsquos Futile Canrsquot We Just Say Nordquo (2007) 19(1) HEC Forum 45 Also see J Downie and K McEwen ldquoThe Manitoba College of Physicians and Surgeons Position Statement on Withholding and Withdrawal of Life-sustaining Treatment (2008) Three Problems and a Solutionrdquo (2009) 17 Health Law J 115

Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

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Close Parker Willmott White and Crowden

434 (2019) 27 JLM 415

cease attempts at prolonging liferdquo and that they must take ldquoreasonable steps to ensure that support is provided to patients and their families even when it is not possible to deliver the outcome they desirerdquo These statements are framed from the doctorrsquos perspective and do not encourage an exploration of the underlying value assumptions in such decisions However this lack of detailed guidance could be a function of the scope of the MBA Code itself which is intended to be a high-level statement of obligations for the profession as a whole

The typically longer policy documents at the StateTerritory level provide more guidance but there is a risk that doctors receive conflicting advice if statements about unilateral decision-making are not qualified in context For example the Queensland Health Guidelines appear inconsistent The document says at several points statements such as ldquoremember that doctors are under no legal or ethical obligation to offer or attempt treatments that are considered futilerdquo90 However it later steps back from this general position and states

Ultimately judgements on whether hellip treatment is potentially futile are hellip at least partially subjective Recent procedural approaches hellip accept that it is not possible to be objective hellip and therefore [fair] processes hellip [incorporating an] individual patientrsquos best interests hellip should prevail91

The frequent repetition of the edict that doctors do not have to provide futile treatment (which could be construed as authorising unilateral decisions) is at odds with the later paragraph about the lack of objectivity involved in decisions about life-sustaining treatment A better approach is to include a caveat with the statements that while doctors are under no legal or ethical obligation to offer or attempt futile treatment it is still good medical practice to engage in shared decision-making The New South Wales Health policies use this strategy and refrain from making isolated statements about unilateral decisions For example the NSW Health Resuscitation Plan Policy states that agreement is not required to withhold interventions of ldquonegligible benefitrdquo but states it is still good clinical practice to discuss why they are not being offered

2 Guidance about the Decision-making Process and Dispute Resolution

Twenty-one policies address some aspect of the decision-making process for withholding and withdrawing life-sustaining treatment92 Most described building consensus rather than setting out a step-by-step process for resolving disputes with mechanisms for appeal and review (features of a formalised procedural approach to decisions mentioned in Part II) While policies provided high-level suggestions about dispute options these statements were typically broad and there was very little specific guidance in many policies about dispute resolution mechanisms

(a) A Consensus-based Process

Many of the policies that addressed the decision-making process adopt a consensus-based approach including setting goals of care Several emphasise this should start with consensus in the treating team followed by involvement of the patient or substituted decision-maker(s) For example the NSW End-of-Life Guidelines note achieving consensus in the treating team can reduce subjectivity or bias and this avoids placing additional stress on the family who may feel they carry the decision-making burden Similarly the ANZICS Statement contemplates that the medical team must determine which ldquooptions are clinically indicatedrdquo and recommend a plan that is consistent with the ldquoknown wishes of the patientrdquo93 Another consensus-based approach is the ldquoGoals of Carerdquo framework adopted in Tasmania Western Australia and parts of Victoria (which replaces ldquonot-for-resuscitation ordersrdquo)94

90 This statement also appears to conflict with the law in Queensland that stipulates except in acute emergencies doctors need consent to withhold or withdraw life-sustaining treatment from patients who lack capacity Guardianship and Administration Act 2000 (Qld) s 66 This is because ldquohealth carerdquo is defined in Sch 2 s 5 as including ldquowithholding or withdrawal of a life-sustaining measure hellip if the commencement or continuation of the measure hellip would be inconsistent with good medical practicerdquo91 Queensland Health Guidelines n 75 4292 The only policies that did not provide guidance about the decision-making process were the AMA Code and the MBA Code93 ANZICS Statement n 73 6394 Thomas et al n 71 Tasmanian Government Department of Health Medical Goals of Care Plan (undated) lthttpswwwdhhstasgovaupalliativecarehealth_professionalsgoals_of_caregt (Tasmanian Goals of Care Plan) WA End-of-Life Framework n 83

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

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Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 435

A few policies also mention using screening tools to assist decision-making including Criteria for Screening and Triaging to Appropriate Alternative Care and the Supportive and Palliative Care Indicators Tool to identify patients at risk of dying95 Several also mention the importance of taking cultural considerations into account or developing local policies to promote this96

(b) Guidance about Dispute Resolution

Although the policies discuss consensus-based approaches many do not address what to do when consensus is not forthcoming At what point should clinicians escalate a dispute to informal or formal dispute resolution processes or is there a point when treatment can simply be unilaterally withheld or withdrawn While many of the policies provide preventive strategies for dispute avoidance very few contain comprehensive guidance for dispute resolution

In addition to the importance of clinical consensus the main recommendations for dispute avoidance included appropriate communication strategies and advance care planning The emphasis on these strategies is important since communication breakdown is a catalyst for disputes97 However dispute resolution should not be ignored because conflicts within families between health professionals and between decision makers and health professionals do occur and contribute to poor patient outcomes98

Policies varied widely in the extent to which they addressed dispute resolution Some of the policies did not mention the possibility for conflict99 Others acknowledged that conflict about life-sustaining treatment can arise although many statements addressed this in a very general way100 For example the ACCRM Statement only alludes to the possibility for disputes stating ldquothere are clear hellip challenges to communicating effectively hellip and a risk that discussions will exacerbate distress and misunderstandingrdquo101 The ACEM Statement is more explicit and instructs emergency department staff to inform themselves about ldquo[c]onflict resolution and knowledge of the relevant mediation servicesrdquo The National Consensus Statement is also high-level but provides a few more avenues for dispute resolution including legal processes It instructs doctors to seek advice or support when ldquoa clinician feels pressured ndash by the patient family carer or another health professional ndash to provide [nonbeneficial] interventionsrdquo102 and suggests that when ldquomanaging conflict complex family dynamics or ethical dilemmas responders may require access to a person who is skilled in mediation the rights of the person bioethics andor the lawrdquo103

These broad statements could be a consequence of the authorship and scope of the policies themselves as many of these are short position statements or in the case of the National Consensus Statement principles for best practice This might indicate that specific conflict resolution guidance is left to the

95 ACEM Policy n 85 3 Royal Australasian College of Physicians Improving Care at the End of Life Our Roles and Responsibilities (2016) 39ndash41 lthttpswwwracpeduaudocsdefault-sourceadvocacy-librarypa-pos-end-of-life-position-statementpdfgt (RACP Statement) Queensland Health Guidelines n 7596 See eg This statement is a joint statement with ANZICS originally adapted from the prior ANZICS policy in 2003 and republished by CICM in 2013 It is no longer part of the materials on the ANZICS website so we have categorised it here as a CICM policy s 14 Australian College of Rural and Remote Medicine Position Statement ndash Rural End of Life Care and Advance Care Planning (2015) 2 lthttpswwwacrrmorgauthe-college-at-workposition-statementspolicy20151220college-position-statement-on-rural-end-of-life-care-and-advance-care-planninggt (ACRRM Statement) ACEM Policy n 85 3 6 RACP Statement n 95 9 RACS Position Paper n 80 2 ANZICS Statement n 73 19 23 32ndash3397 CM Breen et al ldquoConflict Associated with Decisions to Limit Life-sustaining Treatment in Intensive Care Unitsrdquo (2001) 16(5) J Gen Intern Med 283 T Fassier and E Azoulay ldquoConflicts and Communication Gaps in the Intensive Care Unitrdquo (2010) 16(6) Curr Opin Crit Care 65498 See eg Downar et al n 4699 AMA Code n 81 Australian Medical Association The Doctorrsquos Role in Stewardship of Health Care Resources (2016) lthttpsamacomauposition-statementdoctors-role-stewardship-health-care-resources-2016gt (AMA Stewardship Statement) MBA Code n 71 RACS Position Paper n 80 Tasmanian Goals of Care Plan n 94100 ACRRM Statement n 96 WA End-of-Life Framework n 83101 ACRRM Statement n 96 2102 National Consensus Statement n 2 15103 National Consensus Statement n 2 19

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 23: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Close Parker Willmott White and Crowden

436 (2019) 27 JLM 415

institutional level104 Nevertheless this is a gap in the guidance provided to doctors which is addressed more comprehensively in some of the other policies Notably in many of the policies the dispute resolution options provided are hospital-centric with few listing the options of second opinion external to the hospital transfer or legal avenues

In contrast to the above examples a few other policies do provide more guidance about dispute resolution The purpose of the CRELS Report was to address a lack of detailed guidance about consensus building and dispute resolution in the NSW End-of-Life Guidelines and accordingly the conflict resolution guidance in this document was the most comprehensive The CRELS Report includes a detailed flow chart for how to approach conflict with mechanisms for review and appeal105 The model is a consensus-building process but recommends early escalation to the Guardianship Tribunal depending on the dynamics of the conflict It also provides for referral for an expert second opinion and consultation with a clinical ethics committee as a step prior to accessing legal avenues

The ANZICS Statement the Queensland Health Guidelines and the South Australia Health policies (Table 1) also provide more detailed dispute resolution guidance The ANZICS Statement has a chapter dedicated to managing conflict including clear steps that clinicians should take prior to initiating a court action106 These include taking time and ongoing discussion ldquoexternalrdquo second opinion (from a health professional with relevant expertise in the patientrsquos condition who is demonstrably independent from the medical team) or referral to a clinical ethics committee facilitation (a senior member of the hospital administration a senior clinician or another person) patient transfer tribunal application and court action Importantly the ANZICS Statement instructs doctors to facilitate access to legal processes stating family members and substitute decision-makers should be specifically informed of this option and be offered assistance for court costs if the institution brings legal proceedings

Aside from the ANZICS Statement the CRELS Report the Queensland Health Guidelines and the SA Health policies very few policies provided guidance about tribunals or courts as dispute resolution options For example the NHMRC Guidelines have a short section on ldquoMisunderstanding and Conflictrdquo but do not mention legal avenues for dispute resolution in that section (though earlier in the document mention an application can be made to court if doctors believe that a personrsquos representative is not acting in their best interests) Doctorsrsquo lack of knowledge of end-of-life law107 suggests that a mention of legal avenues in addition to other means of resolving disputes is important While the detailed processes vary by jurisdiction policies could use the ANZICS approach of flagging appropriate tribunals and the courts as options Likewise the ANZICS Statement was the only policy to mention doctors or institutions informing patients about legal avenues an important part of facilitating appropriate access to justice108 As the CRELS Report notes ldquo[t]he courts and tribunals will always be needed to resolve a very small proportion of intractable EOL conflictrdquo Early engagement with specialist legal advice can be important in the case of building conflict109

104 The National Consensus Statement n 2 22 advocates that as part of organisational governance ldquoa formal policy framework should exist hellip [that includes] clear dispute resolution processes including access to mediation bioethics and legal support in situations of complex end-of-life decision-making or conflictrdquo This is contemplated at the institutional level105 New South Wales Health Conflict Resolution in End of Life Settings (CRELS) Final CRELS Project Working Group Report Including Consultation Summary (2010) 8 lthttpswwwhealthnswgovaupatientsacpPublicationsconflict-resolutionpdfgt (CRELS Report)106 ANZICS Statement n 73 76ndash88 Note that this section is endorsed and partly reproduced in the RACP Statement n 95 Appendix H107 B White et al ldquoThe Knowledge and Practice of Doctors in Relation to the Law That Governs Withholding and Withdrawing Life-sustaining Treatment from Adults Who Lack Capacityrdquo (2016) 24 JLM 356108 Curnow n 20109 M Linney et al ldquoAchieving Consensus Advice for Paediatricians and Other Health Professionals On Prevention Recognition and Management of Conflict in Paediatric Practicerdquo (2019) 104(5) Arch Dis Child 413

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 24: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 437

VII STRENGTHS AND AREAS FOR FURTHER DEVELOPMENT

A Strengths of the Australian ApproachBefore addressing the gaps in non-institutional Australian policies on withholding and withdrawing life-sustaining treatment we identify three positive aspects to the current position First in the last five years a number of medical professional organisations have drafted new specific policies about decisions to withhold or withdraw life-sustaining treatment Although there is still scope for improvement this is a positive step towards the recommendation in the National Consensus Statement that ldquopolicies and processes should be in place regarding hellip limitations of medical treatmentrdquo110

Second there is increasing recognition that ldquofutilityrdquo or ldquonon-beneficial treatmentrdquo is dependent on goals of care and the patientrsquos values and so is subjective For example the ANZICS Statement thoroughly explores the challenges of futility and recommends comprehensive procedures to navigate this complexity Another example are the amendments made to the AMA End-of-Life Statement due to concern that the default position did not recognise the subjectivity of futility assessments111 While above we argued that the AMA End-of-Life Statement should go further and include a clearer explanation of how futility can be affected by both doctor and patient values this is still a step forward

A third positive aspect is that most of the policies mentioned reducing futile treatment and provided strategies to prevent it Fostering appropriate decision-making that takes into account both considered medical judgments and the patientrsquos wishes should be the ultimate goal of policies that address withholding or withdrawing life-sustaining treatment A key part of this is addressing the many doctor-related reasons for providing futile treatment including poor communication seeing death as a failure and the ldquotreatment imperativerdquo112 The focus on strategies to prevent futile treatment is commendable There is however opportunity now for many of these policies to provide more widespread and concrete guidance about how to address disputes when they occur

B Gaps and Areas for Further DevelopmentDespite these strengths this review identified a number of gaps and scope for improvements in the current policy regime Each of the challenges could be addressed by a multi-society consensus approach that provides uniform concrete procedural guidance for doctors making these decisions This would better promote consistent transparent decision-making that balances the interests of doctors patients substitute decision-makers and society

The first observation is that Australian medical futility policies are highly fragmented They come from a variety of sources with different aims and content Doctors in Australia are provided with differing guidance depending on the specialty and the jurisdiction that they work in The inconsistency across jurisdictions and specialties could cause confusion for doctors who are a mobile workforce A consensus statement akin to the Multi-Society Statement113 could provide a consistent national approach

A second area for improvement is in terminology which currently is inconsistent Changes in terminology and conceptualisations of futility unsurprisingly have tracked developments in the bioethical and clinical literature although generally have lagged behind given the timing cycles of policy development The drift away from futility has occurred in an ad hoc and unsystematic way however partly due to the multiple sources of policy The variation in definitions and terminology is problematic because it could perpetuate confusion about the meaning and scope of futility among clinicians policy-makers and institutions114 It may also potentially diminish the policiesrsquo normative force115 A doctor who is subject

110 National Consensus Statement n 2 23111 Australian Medical Association Of Death and Dying ndash The Discussion We Must Have (16 September 2014) lthttpsamacomauausmeddeath-and-dying-E28093-discussion-we-must-havegt112 L Willmott et al ldquoReasons Doctors Provide Futile Treatment at the End of Life A Qualitative Studyrdquo (2016) 42(8) J Med Ethics 496113 Bosslet et al n 22114 See eg Bosslet et al n 22115 Goodridge n 21

Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

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Close Parker Willmott White and Crowden

438 (2019) 27 JLM 415

to a number of different policies with varying interpretations of futility can be confronted with a case where treatment is both futile and not futile depending on which approach is preferred When forced to choose in this way a doctor might also be tempted to ignore the advice and simply rely on ldquoclinical intuitionrdquo to drive judgment This is troubling in the context of empirical research that suggests that values and goals of care are not sufficiently discussed in discussions with critically ill patients or their substitute decision-makers116

A unified approach to futility is one way to address the terminological variation but such an approach must be carefully crafted Many (but not all) policies have replaced ldquofutile treatmentrdquo with other expressions including ldquonon-beneficial treatmentrdquo with some explicitly doing so because of the problems with futility as a concept However this does not fully address the criticisms articulated in Part II ldquoNon-beneficialrdquo like ldquofutilityrdquo is problematic because what constitutes a ldquobenefitrdquo depends on the treatment goal and could be influenced by the doctorrsquos own values Instead of simply shifting to ldquonon-beneficial treatmentrdquo Australian policies should limit the use of the word ldquofutilerdquo to physiological futility and draw a clear terminological and procedural distinction between this and treatment that is value-laden (perhaps labelling value-laden decisions as ldquopotentially inappropriate treatmentrdquo117 or ldquodisputed treatmentrdquo118)

A third area for improvement is in the extent of guidance about the decision-making process and informal and formal mechanisms for dispute resolution This study found very few Australian medical policies that address decisions to withhold or withdraw life-sustaining treatment provide procedural solutions which involve set mechanisms for external review and appeal These might exist at the institutional level where ethics committees are situated however there is scope for procedural best practice approaches to be modelled in non-institutional policy documents as well A drawback of institutional-level futility policies is that they lack public transparency and higher-level policies have the potential to establish best practices with information that is relevant to specific jurisdictions and medical specialties A procedural approach would avoid reducing complex medical practice into simple statements such as ldquodoctors do not have to provide futile treatmentrdquo and would provide clearer regulatory guidance

Policies currently place significant emphasis on strategies to prevent futile treatment including fostering communication skills and promoting advance care planning but many lacked sufficient guidance about dispute resolution Prevention strategies are critical but only address one aspect of these challenging decisions The dispute resolution guidance in some statements consisted primarily of very short statements about seeking mediation or being familiar with institutional dispute resolution policies In our view policies on withholding and withdrawing life-sustaining treatment should provide both proactive and reactive dispute resolution guidance even if the scope of the policy is relatively brief The goal of both types of strategy should be to provide supportive mechanisms for both families and clinicians in stressful situations Guidance should clearly indicate available legal avenues as options beyond seeking a second opinion mediation or clinical ethics committee Although legal mechanisms should be seen as a last resort courts and tribunals will always be needed to resolve the small proportion of intractable disputes This serves an important public precedent-setting function119 Legal mechanisms are also important because when consensus is not forthcoming harm to the patient can result Indeed doctors cite fear of legal repercussions as one reason they provide treatment that they believe is futile or non-beneficial120 Finally to help level the power differential between doctors and patients or their substitute decision-makers guidance should also advise doctors to inform patients and families of their ability to pursue legal avenues in the event of intractable disputes Again drafting a consensus statement that resembles the Multi-Society Statement could be one way to implement these recommendations in practice

116 Scheunemann et al n 3 White et al n 3 See also MJ Bloomer AM Hutchinson and M Botti ldquoEnd-of-Life Care in Hospital An Audit of Care against Australian National Guidelinesrdquo (2019) 43(5) Aus Health Rev 578117 Bosslet et al n 22118 White Willmott and Close n 45119 Close White and Willmott n 7120 Willmott et al n 112 Sibbald Downar and Hawryluck n 33 Downar et al n 46

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22

Page 26: Close, Eliana, Parker, Malcolm,Willmott, Lindy,White, Ben, & … · 2020-05-18 · Eliana Close, Malcolm Parker, Lindy Willmott, Ben White and Andrew Crowden* A chaell nge in end-of-fie

Australian Policies on ldquoFutilerdquo or ldquoNon-beneficialrdquo Treatment at the End of Life

(2019) 27 JLM 415 439

VIII CONCLUSION

Decisions to withhold or withdraw life-sustaining treatment are a regular part of end-of-life practice in hospital settings and can be fraught with legal clinical and ethical complexity One tension is when patients or more commonly their substitute decision-makers want treatment that doctors believe is ldquofutilerdquo or not in the patientrsquos best interests There is consensus in the bioethical literature that decisions about life-sustaining treatment are highly normative and influenced by a patientrsquos values and differing conceptions of medical best practice Medical policies have the potential to provide consistent terminology and clear procedures to facilitate more ethical and transparent decision-making in this area121 Unfortunately this study found that in Australia the policy environment is fragmented both in the source and nature of guidance provided While there are other regulatory mechanisms that may fill these gaps ndash for example hospital-based policies (which this review did not address) or unwritten best practices ndash these other mechanisms lack public transparency122

This article examined the state of the Australian medical futility policy environment and identified a number of opportunities for improvement Although some authors have resisted the creation of a unified policy123 we believe this option should be explored in the Australian context for several reasons A unified policy would address the fragmentation and differences across Australian jurisdictions and practice areas Although most disputes occur in the ICU it could be drafted to address practice across hospital departments or even in wider health care settings It would also bring Australia in line with developments internationally124

If such a statement is drafted it should possess several attributes First it should be drafted by a multidisciplinary working committee involving representatives from medicine nursing allied health law bioethics health policy health consumers and the broader community This process could be initiated by government or by a group of professional organisations The focus of such an exercise should be on both the process for decision-making terminology and on improved avenues for external appeal It could also be used to develop explicit standards of practice for given clinical situations Second any consensus statement should integrate the principles from the National Consensus Statement and leverage the expertise in the ANZICS Statement and the CRELS Report Both have provided considered careful approaches to the problem of futility including avenues for dispute resolution although there remains scope to promote a refined approach to terminology Third the focus of the statement should be on clarifying terminology and setting out a clear process for dispute resolution One approach would be to do as the Multi-Society Statement does and limit the term ldquofutilerdquo to treatment that is physiologically futile The policy should clearly set out corresponding procedural steps to respond to requests for physiologically futile treatment and treatment that is potentially inappropriate or disputed including escalation to internal and external tribunals and courts when necessary

Decisions about life-sustaining treatment are relatively widespread and conflicts are not uncommon especially in the ICU Medical policies and guidelines are just one part of appropriately regulating these disputes to achieve better outcomes for patients families and health professionals Establishing improved terminology and pathways for decision-making is an important starting point to help medical professionals meet their legal and ethical obligations and facilitate more procedurally fair decisions which recognise patient values

121 Pope n 56122 A recent review of end-of-life care in Australian hospitals identified a lack of systems and processes to implement the National Consensus Statement at the hospital level see Bloomer Hutchinson and Botti n 116123 CRELS Report n 105 36124 Bosslet et al n 22


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