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

2nd Annual SPHeRE Network Conference, February, 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Draft Guidance PreparedExternal consultation Final version published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 ShanagherDeirdre.shanagher@hospicefoundation.ie

People with dementia and carers who have contributed and advised IHF

IHF Changing Minds Team Project and Expert Advisory and

Governance Groups Atlantic Philanthropies