Ann Bell, NP-C Family Nurse Practitioner

Advanced Care Planning and End-of-Life Care

What is advance care planning?

A communication process rather than a legal process

A way of planning for future medical careA mechanism for ensuring that care

received matches patient’s values and goals

Consider a case

65-year-old man HIV+ for 15 yearsHx of non-Hodgkin's lymphoma, successfully

treatedOn HAART with hx of cognitive side effectsRecent hospitalization for liver failureNo family; partner deceased

Why is advance care planning important?

HIV/AIDS patients have an un-predictible course of illness

Builds trustHelps to avoid confusion and conflictPermits peace of mind

Concepts underlying advance care planning

Advance directiveHealth care agent or proxy Do not resuscitate (DNR) ordersPatient Self Determination Act

5 steps for successful advance care planning

1. Introduce the topic2. Structure the discussion3. Document patient preferences4. Review and update when clinical course

changes5. Apply directives when need arises

The EPEC Project, 1999, www.epec.net

Step 1: Introduce the topic

Allow adequate time & privacyAsk what the patient knows: “Have you

thought about having a living will?”Explain the process: “It’s helpful for us to

talk about it before making any decisions.”Determine comfort level: “Do you feel ready

to talk more about this today?”

Step 2: Structure the discussion (Five Wishes)

Who do you want to make health care decisions for you when you can't make them [proxy]?

What kind of medical treatment do you want or don't want?

How comfortable do you want to be? How do you want people to treat you? What do you want your loved ones to

know?

www.agingwithdignity.org

Identify a proxy decision-maker

Entrusted to speak for the patientInvolved in all the discussionsMust be willing, able to take the proxy role

Educate patient and proxy

Define key medical termsExplain benefits, burdens of treatments:

Life-support may only be short-termAny intervention can be refusedRecovery cannot always be predicted

Topics to considerPain managementArtificial nutrition and hydrationCPRMechanical ventilationBlood transfusionDialysisAntibiotics, HAART, other meds

Elicit patient values and goals

Ask about past experiences:“Did the staff ask you about living wills when you

were in the hospital last time?”“What happened with that conversation?”“Did your partner have a living will?”

Use values questions:“What makes your life worth living?”“How would you like to spend your last days?”“What are your spiritual beliefs that might affect

treatment choices?”

Elicit patient values and goals

Elicit patient values and goals

Describe potential patient situations:“Suppose you were very sick in the hospital again.

Would you want our focus to be more on your comfort or on your living longer?”

“Suppose your liver failure progressed. Would you want to go to the intensive care unit, or would you prefer to receive care at home but risk living a shorter time?”

Use an advance care planning document

A number are available:Five WishesLiving Wills

Easy to useReduces chance for omissionsPatients, proxy, family can take home

Step 3: Document patient preferences

Review advance directiveSign the documentationPut it in the patient’s chart or medical

recordEncourage patient to have copies to provide

to different medical settingsProxy may assist with this

Step 4: Review, update

Use clinical events as triggers to review documents

As disease progresses, allow for evolution in patient understanding and preferences

Discuss and document changes

Step 5: Apply directives when indicated

Review the advance directiveConsult with the proxyUse ethics committee for disagreementsCarry out the treatment plan

Pearls

Advance care planning can reduce family burden

Family members may not be the best proxies

Focus on what kind of care is desired rather than what should be withdrawn

Common pitfallsPatient reluctant to engage in ACPClinician reluctant to engage in ACPProxy not involved in discussionsPatient preferences are vague or nonspecificDirective is applied when patient is still

communicativeFamily disagrees with patient decisions

Common clinician assumptions

Patient/individual autonomyFull disclosure for informed decision-

makingControl over the dying processNo one should sufferWritten, formal agreementsFuture orientation

Alternative patient perspectives

Family has obligation to shoulder the burdenThe physician is the expert and should decideTruth of diagnosis is harmful or burdensome to

patientWe can’t control our fate; it’s God’s willAll life involves sufferingA person’s word is all that is neededIndirect communication; present orientation

Other topics to consider

AutopsyOrgan donation Burial / cremationFuneral / memorial servicesPermanency planning for

dependentsFinancial, legal affairsFinal gifts and bequests

Summary

Advance care planning is a fundamental palliative care skill

Advance care planning reduces family burden at end-of-life

The identification of the proxy is an important goal

The discussion is more important than the documents

HospiceProvides support and care for those in the

last phases of life-limiting illnessRecognizes dying as part of the normal

process of livingAffirms life and neither hastens nor

postpones deathFocuses on quality of life for individuals

and their family caregivers

COMMON HOSPICE DIAGNOSES1. Cerebral degeneration, dementia,

Alzheimer’s disease2. Parkinson,s disease3. Cerebrovascular disease4. Heart disease a. Valvular heart disease b. Coronary artery disease c. Congestive heart failure d. Arrhythmia 5. Chronic obstructive lung disease6. Malignancies

COMMON HOSPICE DIAGNOSES7. Failure to thrive8. End stage renal disease9. Cirrhosis10. Peripheral vascular disease with

gangrene11. Abdominal or thoracic aortic aneurism12. HIV

Core Aspects of Hospice

Patient/family focused InterdisciplinaryProvides a range of services:

• Interdisciplinary case management•Pharmaceuticals•Durable medical equipment•Supplies•Volunteers•Grief support

Diagnosis Death

Disease Progression Bereavement

Life-prolonging and restorative treatments

Palliative Care

Hospice

Continuum of End-of-life Care

Ferris F, Balfour H, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A, West P. A model to guide patient and family care. Based on nationally accepted principles and norms of practice. J Pain Symptom Manage. 2002;24(2):106-23.

Ferris F, Balfour H, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A, West P. A model to guide patient and family care. Based on nationally accepted principles and norms of practice. J Pain Symptom Manage. 2002;24(2):106-23.

Additional ServicesHospices offer additional services,

including:•Hospice residential care (facility)• Inpatient hospice care•Palliative care •Complementary therapies•Specialized pediatric team•Caregiver training classes

Hospice Team MembersThe patient's personal physicianHospice physician (medical director)NursesHome health aidesSocial workersClergy or other counselorsTrained volunteersSpeech, physical, and occupational

therapists

Interdisciplinary Team Approach

The Hospice Team

Develops the plan of care Manages pain and symptomsAttends to the emotional, psychosocial and

spiritual aspects of dying and caregivingTeaches the family how to provide care Advocates for the patient and familyProvides bereavement care and counseling

Where Hospice is Provided

HomeNursing FacilityAssisted Living FacilityHospitalHospice residence or unitPrison, homeless shelter – where ever

the person is

Who Pays?Medicare Medicaid Insurance Private paySometimes a combination of these…

Admission Criteria

General•Life-limiting illness, prognosis is 6

months or less if disease takes normal course

•Live in service area•Consent to accept services

Palliative Care

Treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life

The expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life

Curative and Palliative CareCurative care

•Focuses on quantity of life and prolonging of life

Palliative care •Focuses on quality of life and death, and

views death as a natural part of life

References Low-Cost Lessons from Grand Junction, Colorado, NEJM | September 29, 2010 |

Topics: Cost of Health Care, Thomas Bodenheimer, M.D., M.P.H., and David West, M.D. http://healthpolicyandreform.nejm.org/?p=12706&query=TOC

http://www.geripal.org/2010/09/rx-for-us-health-care-grand-junction.html New Yorker, Letting Go: What should medicine do when it can’t save your life?

Atul Gawande, August 2, 2010. http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande#ixzz13Ni1HV00

Katerndahl, D. et al., Family Medicine Outpatient Encounters are More Complex than Those of Cardiology and Psychiatry, Journal of the American Board of Family Medicine. 2011; 24 6-15. http://www.jabfm.org/cgi/content/abstract/24/1/6?etoc

Bowman, Marjorie A, The Complexity of Family Medicine Care, JABFM. 2011; 24 4-5. http://www.jabfm.org/cgi/content/full/24/1/4?etoc