Facilitating discussions on future and end of life care with people who have dementia
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Outline of guidance document about facilitating communication with people with dementia
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Facilitating discussions on future and end of life care with people who have dementia
- 1. DYING TO TALK – FACILITATING DISCUSSIONS ON FUTURE AND END-OF- LIFE CARE WITH PEOPLE WHO HAVE DEMENTIA Deirdre Shanagher, Carmel Collins, Sarah Cronin, Jean Barber, Marie Lynch, Dr Suzanne Timmons ACPEL – Advance Care Planning and End of Life Care Munich, September, 2015
- 2. Today… • Background to development of document • 5 Key considerations to inform good practice • 8 tips for effective communication • The AFFIRM approach
- 3. Dementia Population & Policy: 2046 2016 National Dementia Strategy 2014
- 4. 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 • Lack of awareness and skills to support people (Bayer, 2006 & VanDerSteen et al, 2013)
- 5. Background: Practice tools, service models, primary palliative care Adaptation of Hospice Friendly Hospital resources, development and education for residential settings Roll out and adaptation of Think Ahead STRATEGIC ENGAGEMENT
- 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 Background to Development: Draft Guidance Prepared External consultation Final version published Systematic Literature Reviews EAG consensus on themes Themes informed key considerations & Guidance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)
- 9. Areas staff would benefit from guidance: 1. Communication Skills 2. Capitalising on informal opportunities 3. Facilitating discussions 4. Hosting formal family meetings
- 10. 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
- 11. AFIRM Approach to Active Listening (Stirlingetal,2011)
- 12. Case Study: • Tom has been a resident in a nursing home 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 regularly visits and has become anxious about her husbands deteriorating health. His wife, who is distressed approaches a healthcare assistant asking “could my husband die from not eating enough?”. As a healthcare assistant you know that his wife visits regularly but you aren’t sure what she knows about her husbands diagnosis and care plan.
- 13. Possible responses Using AFIRM
- 14. 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
- 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
- It’s great to be here in Munich – I was here a couple of years ago for Oktoberfest and it’s great to see the city preparing for that again! Anyway, I’d like to thank the conference organisers for giving me this opportunity to speak today about the development of the first in a series of guidance documents being developed for healthcare staff providing care for people who have dementia.
- Today I’m going to tell you about the background to the development of our first guidance document that specifically addresses having conversations with people who have dementia and their loved ones. I will concentrate on some of the contents of the guidance document to include 5 key considerations to inform good practice and 8 tips for effective communication. Finally I will present Christine Stirlings AFIRM approach and demonstrate use of this approach using a case study.
- 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.
- To address this gap the Irish Hospice Foundation commenced a programme of work promoting excellence in end of life care for people living with dementia. One aspect of the work was to develop practice tools for healthcare staff to use when providing care to people with dementia.
- The programme of work was overseen by a project advisory group, made up of healthcare professionals involved in the care of people with dementia. For the development of the guidance document a subgroup of the project advisory group was established. These people were those with particular experience of having discussions with people with dementia. A systematic literature review took place and was informed by 2 other literature reviews about 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 sent for external public consultation after which some small changes were made.
- 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.
- 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.
- The literature reviews identified these 4 areas where staff would benefit from guidance: They are: 1. Communication skills such as person centred communication, use of tools such as story boards, use of short sentences and a calm tone of voice and using active listening techniques such as maintaining eye contact and nodding. 2. Capitalising on informal opportunities and knowing how to respond appropriately to informal chats so use of the AFIRM approach which I will take you through in detail, being clear about the scope of your role and sharing information from informal conversations 3. Facilitating discussions which should be a natural extension of care and part of regular care planning. Useful ways to incorporate this into practice include reflecting with other team members where opportunities arise to optimise discussions and reviewing documentation so that discussions take place, are recorded and followed through 4. Hosting formal family meetings so there is a need to recognise prompts that signal the need for family meetings to include at time of diagnosis, change in care setting from hospital to residential care or a]when there’s a change or decline in a persons condition
- 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.
- 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.