Network of Hospital Friendly Hospitals

Advance Healthcare Directives

Patricia T Rickard-Clarke 17 June 2014

Overview

• Assisted Decision-Making (Capacity) Bill 2013

• Draft General Scheme of Legislative provisions to provide for making Advance Healthcare Directives

Why the legislation?

• Need to modernise law on capacity

• Need a legal framework for advance healthcare directives

• To comply with international obligations

International Obligations

• European Convention on Human Rights

• Council of Europe’s Rec (99)4 concerning the Legal Protection of Incapable Adults

• UN Universal Declaration on Bioethics and Human Rights 2005

• UN Convention on the Rights of Persons with Disabilities (UNCRPD) (2006)

International Obligations

• Council of Europe Recommendation on Principles concerning Powers of Attorney and Advance Directives for Incapacity (2009)

• Council of Europe Recommendation on the Promotion of Human Rights of Older People (2014)2

• Council of Europe Guide on the decision-making process regarding medical treatment in end-of-life situations (2014)

Definition of Capacity

• A person’s capacity is to be construed functionally • Capacity - ability to understand the nature and

consequences of a decision to be made by a person in the context of available choices at the time the decision has to be made (allows for fluctuations in capacity)

• Lack of Capacity – unable to understand information

relevant to decision, retain that information, use or weigh that information as part of the process of making the decision or to communicate decision by any means including third party

How is Capacity Assessed

• Capacity – Person is not to be regarded as unable to understand information relevant to decision if they are able to understand an explanation of it given in a manner appropriate to circumstances. The fact that a person is able to retain information for short period only does not prevent him/her from being regarded as having capacity to make the decision

• Information relevant to decision includes - reasonable

foreseeable consequences of each of the available choices at the time the decision is made or failing to made decision

• Question as to whether a person lacks capacity shall be

decided on balance of probabilities

Guiding Principles

• Principles shall apply for the purposes of an intervention and

• the intervener shall give effect to the principles:

– Presumption of capacity unless the contrary is shown

– Person shall not be considered as unable to make a decision unless all relevant steps taken, without success, to help him or her to do so.

– Making an unwise decision is not indicative of being unable to make a decision

– There shall be no intervention unless it is necessary to do so having regard to the individual circumstances of the person

Guiding Principles (continued)

• An intervention shall be in a manner that:

– Minimises the restriction of person’s rights

– Minimises the restriction of freedom of action and

– Has regard to the need to respect the right of the person to his or her dignity, bodily integrity, privacy and autonomy

Duty of any Intervener

• Permit, encourage and facilitate, in so far as is practicable, the person to participate or to improve his/her ability to participate as fully as possible

• Give effect in so far as is practicable, to past and present

wishes and preferences • Take into account beliefs and values in so far as reasonable

ascertainable • Any other factors which the person would be likely to

consider if able to do so

What is an AHD?

• An advance healthcare directive: means an advance written expression of will and preferences made by a person with capacity, …..concerning treatment decisions that may arise in the event that the person subsequently loses capacity

• Made by a person with capacity • To be put into effect only when person lacks

capacity

Purpose of Legislation

• To promote the autonomy of persons in relation to their treatment choices

• To enable persons to be treated according to their will and preferences (beliefs and values)

• To provide healthcare professionals with important information about persons and their choices in relation to treatment

Additional Guiding Principles for AHDs

• Must be over 18 years • Presumed to have capacity unless there is evidence to

the contrary • Informed decision-making • An adult with capacity is entitled to refuse treatment

for any reason – Even where it appears to be unwise or – not based on sound medical principles, – even where refusal may result in death

• An adult with capacity is entitled to refuse treatment for religious reasons, even where this may result in death

Treatment Refusals (1)

• Treatment Refusal expressed in a valid AHD is as effective as if made contemporaneously by person when he or she had capacity to make decision

• Treatment Refusal in an AHD is legally binding and

must be followed • It is important that:

– The treatment to be refused is clearly specified – The circumstances in which such refusal is intended to

apply are clearly outlined and – At the time the AHD is to be followed the person who

made the directive lacks capacity to consent to treatment in question

Treatment Refusals (2)

• AHD refusing life sustaining treatment must be verified by a written statement by the person making the AHD to the effect that the directive is to apply to that treatment even if his or her life is at risk

• AHD is not applicable to the administration of basic

care

• If any ambiguity about validity – Consultation with patient-designated healthcare

representative/attorney and other healthcare professional – If still ambiguous, doubt resolved in favour of the

preservation of life

Treatment Requests

• A person can indicate what treatments they would wish to have in the future but such requests will not be legally binding

• A treatment request may simply not be feasible

• However, treatment requests will be taken into

account and Code of Practice will state that request should be taken into account where possible

To be valid

• Must be in writing • Must be made voluntarily • Can be expressed in non-technical language • Need not be in a prescribed form but must

contain certain information • Must be witnessed by 2 persons over 18 years,

one of whom must not be a family member • Can be revoked at any time either verbally or in

writing – must have capacity to revoke • Can be altered at any time but must be in writing

and witnessed – must have capacity to alter

Patient Designated Healthcare Representative

• Person can appoint a patient designated healthcare representative (or attorney), maker of AHD can nominate another named person as representative

– Has reached 18 years

– Is not a person who provides personal care or healthcare service to maker of AHD for compensation

– Is not the owner or employee of a residential or healthcare facility where the maker of AHD resides

Authority of Healthcare Representative

• The maker of an AHD may confer on his or her patient-designated healthcare representative

– Power limited to ensuring that the terms of the AHD are carried out

– A General Power to consent to or refuse treatment, up to and including life-sustaining treatment

• The maker of AHD may nominate, a named alternative patient-designated healthcare representative if original dies or is unable or declines to act.

• A patient-designated healthcare representative shall not be able to delegate authority to another

Scope of AHD

• What do Advance Healthcare Directives cover

– General health and mental health

• Are there any circumstances where there are restrictions on AHD

– Can be restrictions for pregnant women

– ??? If a person is being treated under Part 4 of the Mental Health Act 2001 or Criminal Law (Insanity) Act 2006

– But wishes must be followed if feasible

• Court involvement?

Boundaries

• New Legislation will not affect Criminal Law on: – Euthanasia

– Assisted Suicide

• Basic Care – Cannot refuse

– Includes but is not limited to warmth, shelter, oral nutrition and oral hydration and hygiene measures

• Medical Treatment

Codes of Practice • Public Guardian may

– Prepare and publish a code of practice

– Request another body to prepare a code of practice or

– Approve a code of practice prepared by another body whether or not pursuant to a request

For the purpose of one or more of the following: - The guidance of persons assessing whether a person lacks

capacity

- The guidance of decision-makers and interveners

- The guidance of healthcare professionals as respects circumstances in which urgent treatment can be carried out without consent of relevant person and what type of treatment may be provided

Liability • Failure to comply with the terms of a valid and applicable AHD,

civil and criminal liability for breach of common law duty or statutory duty may arise

• Pichon and Sajous v France (ECHR No49853/99) – Conscientious objections remains a limited right derived from religious

freedom that cannot lead to the restriction of the rights and freedoms of another person

• No liability for a healthcare professional if – acting in good faith

– he or she was unaware of the existence and contents of an advance healthcare directive at the time the specified treated was carried out or continued

Enduring Powers of Attorney

• Powers of Attorney Act 1996 to be updated and modernised in Assisted Decision-Making (Capacity) Act

– Appoint a attorney to make healthcare decisions

– Refusal of Life-Sustaining Treatment

Thank You