ADVANCE CARE PLANNING & ADVANCE HEALTHCARE
DIRECTIVES WITH PEOPLE WITH DEMENTIA
Deirdre Shanagher, Marie Lynch, Dr John Weafer, Prof Willie Molloy, Dr Sharon Beatty, Dr Geraldine McCarthy, Patricia
Rickard-Clarke, Emer Begley, Esther Beck, Sarah Murphy
RCSI 35th Annual International Nursing & Midwifery Research and Education Conference, March, 2016
Today:
• Background to development of document
• 4 Key considerations to inform good practice
• Advance care planning
• Advance healthcare directives
Dementia Population & Policy:
54,793
152,1572046
2016
National Dementia
Strategy 2014
ContextLiving and dying well with dementia in Ireland:
2001 2008
2011
2013
2012
2014
Context:
Care Transitions
Multidisciplinary team involvement
Pain & other
Symptoms
Communication
Loss and bereaveme
nt
Assisted Decision Making
(Capacity) Act 2015
Background to Development:
Draft Guidance PreparedExternal consultation Final version published
Systematic Literature ReviewsEAG consensus on themes Themes informed key
considerations & Guidance
Oversight from Project Advisory GroupEstablishment of Expert Advisory Group (EAG)
Guidance Document 2The four key considerations to inform good practice are as follows:
1. Develop understanding of dementia2. Recognise that under Human rights legislation everyone
has the right to make their own decisions.3. Develop understanding of advance care planning4. Become familiar with aspects of the Assisted Decision
Making (Capacity) Act 2015, specifically in relation to:• The Functional approach to capacity • Advance healthcare directives
Functional Approach to Capacity:• Presumption of Capacity
• Understand• Retain• Weigh• Communicate
Advance Healthcare Directives:
• A document where a person can write down what they would 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 advance healthcare directive arise. (A record of advance healthcare directives will be held by the Director of Decision Support Services).
Issues that may be covered in an advance healthcare directive
• Treatments that a person would refuse in the future – this is legally binding
• A request for a specific treatment. This is not legally binding but must 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.
Three areas of guidance:• Advance care panning and advance healthcare directives:
• For People with dementia
• For family members
• For healthcare professionals
Guidance for Healthcare Professionals:If Decision-making capacity is an issue:1. Support the person to be involved in the decision-making process by
engaging in capacity building and maximising. 2. Consider the level of support that the person requires to make the decision in
question.3. Seek evidence of previously expressed preferences.4. Consider which option, including not to treat, would be least restrictive of the
person’s future choices.5. Consider the views of anyone indicated by the person. These people may be
those appointed by the person to support them when making decisions. 6. A Consider involving advocacy support.
If there is nobody appointed by the person whose decision making capacity is at issue and/or an urgent decision is required, an application can be brought to the circuit court seeking the appointment of one or more persons to act as a decision making representative.
IHF Guidance Documents
Being Finalised post public
consultation
Consultation March 2016
Acknowledgements
Thank you and QuestionsFor more information:
Deirdre [email protected]
People with dementia and carers who have contributed and advised IHF
IHF Changing Minds Team Project and Expert Advisory and
Governance Groups Atlantic Philanthropies