Advance Care Planning & Advance Healthcare Directives with People with Dementia
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Outline of guidance document for healthcare staff about advance care planning and advance healthcare directives with a person with dementia
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Advance Care Planning & Advance Healthcare Directives with People with Dementia
- 1. ADVANCE CARE PLANNING AND ADVANCE HEALTHCARE DIRECTIVES WITH A PERSON 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 A Journey of Change Webinar, April 20th 2016
- 2. Today: • Background & Context • The legislation – useful facts • Key considerations to inform good practice • Functional approach to capacity • Decision making supports • Advance healthcare directives • Guidance for healthcare staff
- 4. Setting the scene Dementia in Ireland
- 5. Dementia Population & Policy: 2046 2016 National Dementia Strategy 2014
- 7. The Assisted Decision Making (Capacity) Act 2015: • Replaces the Lunacy Regulation (Ireland) Act 1871 • Includes provision for Advance Healthcare Directives which were previously legal under common law but had no legislative underpinning. • Codes of Practice/Guidelines for full implementation required • Minister for Justice will commence most of the Act • Minister for Health will commence the AHD section
- 8. Key considerations to inform good practice: 1. Recognise that under Human rights legislation everyone has the right to make their own decisions. 2. Develop understanding of advance care planning 3. Become familiar with aspects of the Assisted Decision Making (Capacity) Act 2015, specifically in relation to: • The Functional approach to capacity • Advance healthcare directives
- 9. Functional Approach to Capacity: • Presumption of capacity Responsibility of those questioning decision making capacity to prove there is an issue… • Time and issue specific
- 10. Functional Approach to Capacity: • Understand • Retain • Weigh • Communicate
- 11. 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).
- 12. 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.
- 13. What makes an advance healthcare directive legal? 1. At the time in question a person lack decision making capacity to give consent to the treatment 2. The treatment to be refused is clearly identified in the advance healthcare directive 3. The circumstances in which the refusal of treatment is intended to apply are clearly identified in the advance healthcare directive 4. The advance healthcare directive was made voluntarily. 5. The advance healthcare directive was not altered or revoked. 6. The person did not do anything inconsistent with the terms of the advance healthcare directive while they had decision making capacity.
- 14. Guidance for healthcare professionals: • Understand decision making supports that are available • Presuming decision-making capacity • Maximising decision-making capacity • Assessing decision making capacity • Making decisions if decision-making capacity is an issue
- 15. Decision Making Supports • Decision making assistant – assists with making decisions • Co decision maker – makes decision jointly with a person • Decision making representative – can make one (or more) decisions on a persons behalf • Enduring Power of Attorney – document drawn up with a person who has decision making capacity, giving another person(s) the power to make decisions • A designated healthcare representative is a person appointed in an advance healthcare directive to act on anothers’ behalf in relation to healthcare treatment decisions
- 16. Maximising decision-making capacity: • Discuss treatment options in a place and at a time when the person is best able to understand and retain information. • Ask the person if there is anything that would help them remember information or make it easier to make a decision; such as: • Bringing another person to healthcare meetings or • Having audio or pictorial information about their condition • Writing things down • Using simple language • Finding out how the person usually communicates • Giving the person space to think quietly • Involving others where necessary such as speech and language therapists or psychologists
- 17. 8 Tips for Effective Communication 1. Adopt a person centred approach to communication 2. Connect with the person 3. Consider the communication environment 4. Be aware of your own communication style and approach 5. Use active listening 6. Use simple language 7. Focus on one question at a time 8. Clarify Information and check understanding See G. Doc 1
- 18. Video… • Thinking Ahead… having the conversation
- 19. Assessing decision-making capacity: • Consider what decision has to be made • Do not discriminate • Is there something currently happening that may temporarily affect the person’s decision-making capacity • Consider what supports have been provided • Consider if decision-making capacity is absent even with all practicable support
- 20. Assessing decision-making capacity: • Can the person: • Understand information relative to the decision • Retain the information long enough to make a voluntary choice • Use or weigh the information as part of the process of making the decision • Communicate their decision?
- 21. 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.
- 26. 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
- Re codes of practice: Will & Preferences Least restrictive Proportionate Limited in duration Take into account beliefs and values
- 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.
- Presuming covered under the functional approach to capacity
- At the time you are making an enduring power of attorney, the nominated attorney will be obliged to sign the document of the enduring power stating that he/she will undertake to carry out the obligations that you have set out in the document when the enduring power comes into effect. An enduring power of attorney will only come into effect when you lack decision making capacity and the enduring power of attorney is registered.
- See guidance document 1
- So we came up with these 8 tips for effective communication. Adopt a person centred approach. So find out how best to support a person to understand information, use aids, talking mats, sign language, be creative & open, observe behaviours and build a collaborative picture Connect with the person. Prioritise this and don’t get focused on exchanging information and facts. Use life story work as a means of developing relationships and focus on the feelings BEHIND words. Consider the communication environment such as lighting, noise, seating and resources such as aids required (picture boards or talking mats) Be aware of your own communication style. So approach to the front, make eye contact, get to the same level as the person, introduce yourself, call them by their name, explain what you’re there for, speak slowly and clearly using a calm tone of voice Use active listening techniques such as conversational cues like “hmm” “I see” or “really”, don’t rush to fill silences and give the person extra time to process information, Use simple language and the persons name, focus on one topic at a time, avoid jargon, use aids and different words Focus on one question at a time so reframe open ended questions to closed questions focusing on 1 idea at a time Clarify information and check understanding so ask questions and repeat back information
- 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.
- I’d like to acknowledge these people and will now take some questions if there are any.