Update on current status of Assisted Decision Making (Caacity) Legislation and what this will mean for healthcare workers

1. ADVANCE CARE PLANNING & ADVANCE
HEALTHCARE DIRECTIVES
Angela Edghill & Deirdre Shanagher
Hospice Friendly Hospitals Acute Hospitals Network Meeting, November, 2015

2. Today:
• Assisted Decision Making Capacity legislation
• Advance Care Planning
• Advance Healthcare Directives
• Challenges with advance care planning
• Quick Update

3. Assisted Decision Making (Capacity) Bill
2013
• Replaces the Lunacy Regulation (Ireland) Act 1871
• Published by Department of Justice 15th July 2013
• Introduced in the Dáil in December 2013 (2nd Stage)
• Referred to Select Committee on Justice in December
2013
• Committee suggests amendments including Advance
Healthcare Directives
• Amendments published and Committee Stage of Bill
taken in June 2015
• Bill as amended agreed in the Dáil
• Bill now with Seanad and Committee Stage due 17th Nov

4. Assisted Decision Making (Capacity) Bill
2013
• Includes provision for Advance Healthcare Directives
which were previously legal under common law but had
no legislative underpinning.
• Will require Codes of Practice/Guidelines for its full
implementation
• Hope it will be enacted before end 2015
• May not be commenced
• Minister for Justice will commence most of the Act
• Minister for Health will commence the AHD section

5. Assisted Decision Making (Capacity) Bill
2013
Codes of Practice
It’s anticipated that the bill will be enacted in the Dáil in December 2015. The likely next steps will be:
• The Director of the Decision Support Service will be established and responsible for publishing all codes of
practice related to assisted decision making.
• The Minister for Health will appoint a multi-disciplinary Working Group to formulate an overarching code of
practice for healthcare professionals.
• The remit of the Working Group will be to ‘interpret’ and expand in detail the legislation i.e. develop an
overarching code of practice for healthcare professionals.
• There will be a need for more detailed profession-specific codes of practice. Such codes will most likely
focus on day to day practice.
• While the Director of the Decision Support Service will be the person responsible for publishing all codes of
practice it is likely that professional bodies will need to develop profession-specific codes of practice
• .

6. Assisted Decision Making Capacity
legislation
• Presumption of Capacity
• Understand
• Retain
• Weigh
• Communicate

7. Assisted Decision Making Capacity
legislation
• Functional Capacity Assessment
• Time and issue specific
• Levels of Assisted Decision Making:
• Decision Making Assistant
• Co-decision Maker
• Decision Making representative
• Power of Attorney
• Advance Healthcare Directives

8. Assisted Decision Making Capacity
legislation
• Guiding Principles
• Will & Preferences
• Least restrictive
• Proportionate
• Limited in duration
• Take into account beliefs and values

9. Advance Care Planning
• … refers to ‘a process of discussion and reflection about
goals, values and preferences for future treatment in the
context of an anticipated deterioration in the patient’s
condition with loss of capacity to make decisions and
communicate these to others (RCPI, 2014).
• This process may lead to the formulation of an advance
healthcare directive, an advance decision to refuse
treatment or to the appointment of a decision making
assistant to help interpret a person’s advance preferences
(McCarthy et al, 2011).

10. Advance Healthcare Directives:
• … is a document that describes one’s future preferences
for medical treatment in anticipation of a time when one
is unable to express these preferences because of illness
or injury (Roth, 2014).
• It is a decision made by a person while he or she has
decision-making capacity regarding the medical treatment
he or she would wish to receive (and more frequently not
to receive) if he or she subsequently loses capacity
(McCarthy et al 2011).
• Advance healthcare directives can be revoked orally at
any time once capacity is present and only become active
when capacity is lost.

11. Challenges With Advance Care Planning:
• What Challenges do you experience with advance care
planning in your practice?

12. Challenges With Advance Care Planning:
• Time
• Competing tasks
• Training and Education
• Timing of initiation of discussions
• Uncertainty about the value of advance care planning
• Unclear about legal responsibilities
• Wanting to maintain hope

13. Worth remembering…
• Advance care planning can:
• Contribute to an improved quality of life at the end of life.
• Ensure future wishes can be carried out
PEOPLE WANT TO HAVE CONVERSATIONS, ARE
WILLING TO RECORD PREFERENCES & FEEL
RELIEVED WHEN ISSUES HAVE BEEN DISCUSSED
(Dempsey, 2013, O’Shea et al, 2013, Moorman, 2011 & Sharp et al 2013)

14. IHF Guidance Documents

15. Resources:
• Guidance document: Facilitating discussions on future
and end of life care with person with dementia &
Factsheet
• Think Ahead
• HSE National Consent Policy
• NMBI Code of Professional Conduct and Ethics for
Registered Nurses and Registered Midwives
• Guide to Professional Conduct and Ethics for Medical
Practitioners
• Guiding Principles of Assisted Decision Making (Capacity)
Bill (2013). Pages 17 & 18

16. For more information:
Angela Edghill, Advocacy Coordinator
angela.edghill@hospicefoundation.ie
Deirdre Shanagher, Development Officer
deirdre.shanagher@hospicefoundation.ie