The document discusses proposed legislation in Ireland to establish a legal framework for advance healthcare directives (AHDs). Key points: - AHDs would allow people to make healthcare decisions in advance if they lose capacity in the future, promoting autonomy and respecting personal values and choices. - To be valid, an AHD must be in writing, made voluntarily by those with capacity, and witnessed. People can also appoint a healthcare representative. - AHDs can refuse treatments but not basic care. Refusals must clearly specify treatments and circumstances. Life-sustaining refusals require additional verification. - The legislation aims to comply with international standards while not affecting laws on euthanasia or

1. Network of Hospital Friendly Hospitals
Advance Healthcare Directives
Patricia T Rickard-Clarke 17 June 2014

2. Overview
• Assisted Decision-Making (Capacity)
Bill 2013
• Draft General Scheme of Legislative
provisions to provide for making
Advance Healthcare Directives

3. Why the legislation?
• Need to modernise law on capacity
• Need a legal framework for advance
healthcare directives
• To comply with international obligations

4. 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)

5. 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)

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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?

21. 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

22. 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

23. 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

24. 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

25. Thank You