The conference discusses advance healthcare directives (AHDs) and advance care planning in Ireland, highlighting that only 6% of adults have written an AHD. It emphasizes the importance of awareness, as many individuals remain unprepared for future healthcare decisions, leading to vulnerability. Legal frameworks confirm that AHDs are recognized when made by competent individuals, reinforcing their role in healthcare decision-making and planning for future care needs.

1. Advance Healthcare
Directives
Assisted Decision Making
(Capacity) Act Conference 2018
November 2018
Deirdre Shanagher

2. Today:
• Advance Care Planning (ACP)
• Advance Healthcare Directives (AHD)
• Implications for health and social care professionals
• Questions

3. In Ireland:
Only 6% of people have
written an AHD
Irish Attitudes to Death, Dying & Bereavement (2014)
National representative sample of 891 people

4. More recent research….
• Almost half of adults in Ireland have not planned ahead
for their future leaving themselves more vulnerable to
abuse
• Just 6% of adults (over the age of 18) had legally
nominated a family member, or friend to be their Attorney
(under Enduring Power of Attorney) to make legal and
financial decisions, should they become unable to do so
• Just 8% had discussed a preferred place of care (at
home, or nursing home) with family, friends, or
an appointed Attorney for if they developed a serious, or
long-term illness

5. More recent research….
• 22% reported having a personal pension and just 27% had
made a will
• Just 11% were aware of what an advance healthcare directive
is
• 7% were aware of the ‘Think Ahead’ resource which guides
people in organising their affairs in the event of an emergency,
serious illness, or death.
• Awareness raising needed

11. Advance Care Planning –What is
it?
Voluntary discussions over time about future care
Process not task – may be more than one conversation
When we know things may change
When we know decision making in the
future may be difficult

12. Oct 30th 09 ST/AON
What might be included in ACP
discussions
Spiritual

13. Guidance for healthcare professionals:
• Always presume decision making capacity
• Help the person to maximise their decision making
capacity
• Remember that the person with dementia can choose
not to take part in the advance care planning process
• Be aware of how to assess a persons decision making
capacity if required to do so
• Gain knowledge on what steps to take if decision
making capacity is an issue
• Check existing advance care plans with the person
regularly for validity and applicability

16. Advance Healthcare Directives (AHD):
• A document where a person can write down what they
would not like to happen in relation to certain medical care
treatments
• Only comes into force when a person loses capacity,
becomes ill and the circumstances in their AHD arise.
• ADMA allows a person to appoint a representative
(designated healthcare representative) to make treatment
decisions in accordance with their will & preferences

17. Legal status of AHDs:
• Case law: Irish Supreme Court in Re a Ward of Court (No 2)
[1996]2 IR 79 – AHDs are recognised by Irish law, provided
that the author was competent and that the directive was
specific to the patient’s current situation
• Irish Medical Council Guide to Professional Conduct & Ethics
(8th Ed 2016) Section 16.2: …. An AHD has the same status
as a decision by a patient at the actual time of an illness
and should be followed provided that:
• the request or refusal was an informed choice, in line with the
principles in paragraph 9;
• the decision covers the situation that has arisen; and
• there is nothing to indicate that the patient has changed their mind.

18. Legal status of AHDs:
• NMBI Code of Professional Conduct for Registered
Nurses & Midwives (2014): An AHD should be
respected on condition that:
• the person made an informed choice regarding their decisions at
the time of making the plan;
• the decision in the directive covers the situation that has now
arisen;
• there is no indication that the person has changed their mind since
the advance care directive or plan was made.
• Part 8 of the ADMA (2015) – legislative provisions for
AHDs

19. Making an AHD:
• Must be 18 years or older
• Must have capacity at the time the AHD is being made
• Must be made voluntarily
• Documented to include name, DOB & contact details
(video & voice recording acceptable)
• Be signed by 2 witnesses who are over 18, one of which
is not a member of the directive makers immediate family.
Each witness is to observe the directive maker signing the
AHD.
• If appointing a DHR: He/she to be a witness and DHR
details to be documented also (name, DOB & contact
details)

20. Think Ahead form
Includes an
advance
healthcare
directive
compliant with
the new
legislation

21. Think Ahead form
Think
Talk
Tell
Recor
d
Revie
Sections:
1. Key Information
2. Care Preferences (AHD
and emergency summary
form)
3. Legal
4. Financial
5. When I Die

22. Issues that may be covered in an AHD:
• Treatments that a person would refuse in the future – this is legally
binding – even if deemed unwise, not based on sound medical principles or will
result in death
• A request for a specific treatment. This is not legally binding but should be
taken into consideration during any decision-making process which relates to treatment
for the person in question if that specific treatment is relevant to the medical condition for
which the person may require treatment.

23. What makes an AHD legal?
• The person had decision making capacity at the time
they made the advance healthcare directive.
• The advance healthcare directive was made voluntarily.
• The advance healthcare directive was not altered or
revoked.
• The person who made the advance healthcare directive
did not do anything inconsistent with the terms of the
advance healthcare directive while they had decision
making capacity.

24. When will an AHD come into effect?
• Only comes into force when a person loses capacity,
becomes ill and the circumstances in their AHD arise.
• AHD is NOT applicable if:
• The person has capacity to consent to or refuse treatment
• The treatment is not materially the same as specified in the AHD
• The circumstances for the AHD to apply are absent
• Re life sustaining treatment; if the AHD does not state that it is to
apply even if the directive makers life is at risk
• The refusal in the AHD relates to “basic care”

25. Uncertain re AHD?
• Consult with the DHR (if one appointed) or family and
friends
and
• Seek opinion of a second health and social care
professional
• If ambiguity remains; resolution in favour of preserving the
directive makers life

26. Implications for healthcare:
• If there are grounds to believe a treatment refusal in an
AHD is valid & applicable – no civil or criminal liability
• If belief that AHD is not valid & applicable and AHD not
complied with – no civil or criminal liability
• No civil or criminal liability if at time in question:
• There were no grounds to believe an AHD existed
• There was no immediate access to the AHD

27. Designated Healthcare Representative:
• A person(s) appointed by a directive maker to act on their
behalf in relation to healthcare decisions when they lack
capacity
• They are responsible for ensuring an AHD is complied
with
• They can be specifically appointed
• to advise and interpret the directive makers will & preferences
• to consent/refuse treatment
• (with reference to the AHD)
• Must keep a written record of decisions taken and present
for inspection at request of the directive maker or DSS

28. Designated Healthcare Representative:
• The DHR:
• Must not be convicted of an offence
• Must not be the owner or registered provider of a residential facility
or mental health facility where the directive maker lives
• Must not be a provider of personal or healthcare services to the
directive maker for compensation
• Complaints re DHR can be made to the DDSS who can
investigate

29. Draft codes of Practice:
• Section of ADMA commenced to allow for HSE
multidisciplinary group to be established to make
recommendations re codes of practice to the DDSS
• Codes of practice in development
• AHD multidisciplinary working group established (prepare
recommendations for code of practice for AHDs)
• Consultation closed May 4th 2018
• When approved will be published by DDSS
• Codes will be admissible in legal proceedings
• DDSS will establish & maintain a register for AHDs

31. Planning for the future can help you…
• Create opportunities to do enjoyable things
• Say important things to people you care about
• Be prepared for various situations that might arise
• Reduce the practical and emotional burden on family and
friends
• Address concerns & fears
• Remain in control at a time when this may become limited
e.g. during a crisis
• Enjoy life knowing that important things have been
discussed

32. How does it work?
Have you done it yet?

33. Deirdre Shanagher
Deirdre.shanagher@hospicefoundation.ie
Acknowledgements:
Information here available via drafts codes of
practice, HSE 2018