Advance Care Planning & Advance Healthcare Directives with People with Dementia
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1. The document provides guidance on advance care planning and advance healthcare directives for people with dementia, their families, and healthcare professionals. 2. It outlines four key considerations for good practice: understanding dementia, recognizing patient rights, understanding advance care planning, and being familiar with the Assisted Decision Making Act regarding capacity and advance directives. 3. The guidance stresses the presumption of capacity, engaging the patient, and considering previously expressed preferences when making decisions for those lacking capacity. It also describes what can be included in an advance healthcare directive.
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Advance Care Planning & Advance Healthcare Directives with People with Dementia
- 1. 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
- 2. Today: • Background to development of document • 4 Key considerations to inform good practice • Advance care planning • Advance healthcare directives
- 3. Dementia Population & Policy: 2046 2016 National Dementia Strategy 2014
- 5. Context: Care Transitions Multidisciplinary team involvement Pain & other Symptoms Communication Loss and bereavement Assisted Decision Making (Capacity) Act 2015
- 6. Background to Development: Draft Guidance Prepared External consultation Final version published Systematic Literature Reviews EAG consensus on themes Themes informed key considerations & Guidance Oversight from Project Advisory GroupEstablishment of Expert Advisory Group (EAG)
- 7. Guidance Document 2 The four key considerations to inform good practice are as follows: 1. Develop understanding of dementia 2. Recognise that under Human rights legislation everyone has the right to make their own decisions. 3. Develop understanding of advance care planning 4. Become familiar with aspects of the Assisted Decision Making (Capacity) Act 2015, specifically in relation to: • The Functional approach to capacity • Advance healthcare directives
- 8. Functional Approach to Capacity: • Presumption of Capacity • Understand • Retain • Weigh • Communicate
- 9. 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).
- 10. 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.
- 11. Three areas of guidance: • Advance care panning and advance healthcare directives: • For People with dementia • For family members • For healthcare professionals
- 13. 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.
- 15. Acknowledgements Thank you and Questions For more information: Deirdre Shanagher Deirdre.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
Editor's Notes
- The number of people living with dementia is rising continuously as people are living longer with more chronic illnesses to include dementia. By 2046 within Ireland alone the number of people with dementia will have increased by over 170%! Doubling in the next ten years and trebling in the next 30 years.
- From a policy point of view, the need for a palliative approach in the care of people with illnesses other than cancer has been recognised in Ireland since 2001 with many reports to include the PCFA report in 2008 and more recently the National Dementia Strategy in 2014 particularly emphasising the need for a palliative care approach for people with dementia
- People with dementia have unique care needs Long illness trajectory combined with diminishing capacity May be complicated with responsive behaviours and communication difficulties This is compounded by professionals lacking skills and therefore people are not being referred to SPC Teams Compounded by professionals lacking skills and PWD not being referred to SPC teams Course of a person’s illness may be punctuated by episodes of confusion, hallucinations and delusions and possible personality and / or behavioural changes Recognising dementia’s terminal nature has been associated with greater comfort for pts dying with dementia All of this coinciding with the legislation on Assisted Decision Making that impacts on the PWD and all those that care for them
- The programme of work was overseen by a project advisory group, made up of healthcare professionals, a lawyer, researchers and a representative from ASI. 2 people with dementia provided feedback on a draft of the document. A systematic literature review took place and was informed by 4 other literature reviews about advance care planning, advance care planning, communication and dementia people with intellectual disabilities and dementia and those with young onset dementia. The themes from the literature review were presided over by the expert advisory group and consensus was gained on the key considerations and guidance based on the literature. Finally a draft document was prepared and will be going for public consultation middle/end of March???
- Progressive, staff need to respond appropriately when opportunities arise The Universal Declaration on Bioethics and Human Rights (2005) addresses the right of a person to consent to and to refuse medical treatment. United Nations Convention on the Rights of Persons with Disabilities (2006) called on countries to facilitate people with disabilities to exercise their right to make choices and express preferences in relation to their care on a similar basis equal to those who do not have any disability . Council of Europe Recommendations: Self determination and to protect the rights of older people. Constitution of Ireland right of people to decide for themselves and bodily integrity when a person does not have the capacity to consent the intervention may only be carried out with the authorisation of his or her representative, an authority or a person or body provided by law, a person has the right to make decisions (even unwise decisions) on their own behalf and is assumed to have capacity to do this unless proven otherwise. The responsibility for proving otherwise rests with the person challenging capacity. The Health Service Executive National Consent Policy clearly states that advance care planning is a process of discussion. A person can choose to or not to engage with this
- A person can refuse treatment up to and including life-sustaining treatments but cannot refuse what is termed “basic care”. The legislation on advance healthcare directives defines basic care as including, (but is not limited to), warmth, shelter, oral nutrition, oral hydration and hygiene measures but does not include artificial nutrition or artificial hydration (which would be termed as medical treatment) (6). A person has the legal right to refuse life-sustaining treatment in an advance healthcare directive even if it means that their life is at risk. This promotes individual autonomy and respect for a person’s will and preferences. A healthcare professional will be obliged to follow a person’s valid advance healthcare directive even if he/she disagrees with such decision. Minister for Health will be appointing a multi-disciplinary Working Group to make recommendations for a code of practice specifically for the guidance of designated healthcare representatives and healthcare professionals.. The Director of the Decision Support Service has the function of preparing and publishing the code of practice when finalised.
- The difference between an ACP and AHD is the refusal and legal binding with refusing treatments.
- The final product is a full document and a 2 page factsheet that was designed to be accessible by healthcare staff so it can be hung on clinic room walls as a prompt.
- I’d like to acknowledge these people and will now take some questions if there are any.