Facilitating Discussions on Future and End of Life Care With People who have Dementia
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Workshop presentation on Irish Hospice Foundation Dementia guidance document 1 "Facilitating Discussions on Future and end of life care with a person with dementia"
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Facilitating Discussions on Future and End of Life Care With People who have Dementia
- 1. FACILITATING DISCUSSIONS ON FUTURE AND END-OF-LIFE CARE WITH PEOPLE WHO HAVE DEMENTIA Deirdre Shanagher, Cecelia Hayden, Carmel Collins, Sarah Cronin, Jean Barber, Anne Quinn, Lasarina Maguire, Marie Lynch, Dr Suzanne Timmons Palliative Care Needs of People With Dementia: Building Capacity Mullingar, November, 2015
- 2. What would you like from todays session?
- 3. Today… • Background & Context • Group Work • Discussion • Going Forward
- 6. Context: • People with dementia have unique care needs • Long illness trajectory • May be complicated with responsive behaviours and communication difficulties (Bayer, 2006 & Tilly et al, 2008) • Staff should be knowledgeable, confident and competent (Bayer, 2006 & VanDerSteen et al, 2013)
- 7. I’m not ready to die yet… Please don’t send me away to die I’m not afraid to die. But I don’t want to be in pain Am I dying?
- 8. In Groups: • Discuss the case study presented • Identify possible responses
- 9. Case Study 1: • Tom, who has dementia has been in your care for the past six months and has become increasingly frail. He is currently unable to walk and has a very poor appetite which has caused him to lose a noticeable amount of weight in recent months. His wife has become anxious about her husbands deteriorating health. His wife, who is distressed approaches you asking “could my husband die from not eating enough?”. As a healthcare worker you know that Toms wife is heavily involved in his care but you aren’t sure what she knows about her husbands diagnosis and care plan.
- 10. Case Study 2: • Two years ago, Kathleen was diagnosed with dementia. Over the last year, she has needed a lot more help with most personal and domestic activities. One day Kathleen became quite tearful when speaking to you and said “I am so frightened of having to move from here and the thoughts of being cared for and dying in a strange place”.
- 11. Case Study 3: • Michael is a 43-year-old man who has Down Syndrome and a mild Intellectual Disability. He had until lately travelled either by bus or train to attend matches as he is a passionate supporter of his local and county GAA teams. Michael attends a day service where staff have observed that he was “not himself” and that he was not engaging with either them or his colleagues. He has appeared to be withdrawn at times. He has also become more reliant on others and less likely to initiate activities. Michael recognises that he is struggling more now, his coping skills are diminishing, and he is finding it increasingly difficult to make sense of the world around him. There is evidence of reduced emotional control, irritability and loss of self direction. He is less tolerant of his peers, and with decline in social behaviours becoming more evident, he has begun shouting at others, for no obvious reason. Michael attended the memory clinic. A full physical work-up was carried out to out rule pseudo dementia and to inform differential diagnosis. He had a full cognitive work up and following comprehensive interviews with key people in his life a consensus diagnosis agreed that he met ICD-10 criteria for Alzheimer’s type dementia. It was agreed that Michael is presenting with a very compressed decline and that the level of support that he will require in the future will be significant.
- 13. 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
- 15. (Stirling et al, 2011)
- 16. Case study 1: Possible responses
- 17. Case study 2: Possible responses
- 18. Case study 3: Possible responses:
- 20. Going Forward……. • What one thing can you do differently within your practice or organisation with regard to discussions on future and end of life with a person with dementia?
- 21. List of Guidance Documents Being Developed: 1. Facilitating discussions on future and end-of-life care with a person with dementia 2. Advance care planning and advance healthcare directives 3. Loss & Grief 4. Hydration and Nutrition 5. Pain assessment & management 6. Ethical decision making 7. Medication
- 23. 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
- Sticky notes on the table – write down one question you have about having discussions with people who have dementia. We’ll try to answer these – if we don’t get a chance we can send feedback when circulating todays evaluation responses.
- I think we all know at this stage that the number of people living with dementia is rising continuously as people are living longer with more chronic illnesses to include dementia. The chart on the screen indicates that 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
- We know that Dementia is a terminal illness. We know that people dying with dementia are a vulnerable group who have unique needs. The nature of dementia is that it is progressive. The literature indicates that palliative care principles should be introduced early in the illness so that the PWD can engage meaningfully in discussions about their future and end of life care. To do this staff need to be knowledgeable, confident and competent to support people with addressing issues and inviting them to make decisions about their future care needs However, there is a void of practice guidelines to support healthcare staff to do this.
- Link to resources- I.E Think Ahead form might be useful
- Prior to engaging with a person with an Intellectual Disability and using the AFIRM response, it is important to acknowledge that the person may find it hard to express how they are feeling. Consequently, it is important that staff who know the person very well, and who understand the person’s usual methods of communication are involved when a diagnosis is being explored – particularly where the person involved does not use words to communicate.
- So before outlining specific guidance for facilitating discussions with people with dementia the expert advisory group agreed that it was necessary to set out some fundamental knowledge applicable to caring for people with dementia. The key considerations were identified in the literature review and the idea of these considerations is that they should be applied as foundation steps by ALL healthcare staff supporting people with dementia. So the 5 areas to inform good practice are: 1 to recognise that communication with a person with dementia is ALWAYS possible 2 Develop knowledge about the progression of dementia and key triggers for end of life discussions. Such as time of diagnosis or deterioration in a persons condition. 3 Plan future care to optimise comfort 4 Promote personhood throughout the persons journey And 5 Record future wishes when they are expressed.
- 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
- So to focus on one of those techniques the guidance documents recommends use of Stirlings AFIRM approach Acknowledge the persons concerns and fears Find out what is known Address immediate concerns Respond to other questions Meet again or with senior staff to address concerns To indicate how this is used we’ll look at a case study from a healthcare assistants perspective….
- Using the AFIRM approach here are some possible responses that can be used.
- 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.
- That’s just some of the contents to this first guidance document. Other guidance documents are being prepared on the following areas and are relevant when caring for a person with dementia.
- I’d like to acknowledge these people and will now take some questions if there are any.