facilitating discussions on future and end of life care with people who have dementia
TRANSCRIPT
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 CareMunich, September, 2015
Today…• Background to development of document
• 5 Key considerations to inform good practice
• 8 tips for effective communication
• The AFFIRM approach
Dementia Population & Policy:
54,793
152,1572046
2016
National Dementia
Strategy 2014
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)
Background:
Palliative care for
people with dementia will be prioritised
in all care settings; and more people
will be supported to
die well at home
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
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Draft Guidance PreparedExternal consultation Final version published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)
5 Key Considerations:
Areas staff would benefit from guidance:1. Communication Skills
2. Capitalising on informal opportunities
3. Facilitating discussions
4. Hosting formal family meetings
8 Tips for Effective Communication1. Adopt a person centred approach to
communication2. Connect with the person3. Consider the communication environment4. Be aware of your own communication style
and approach5. Use active listening6. Use simple language7. Focus on one question at a time8. Clarify Information and check
understanding
AFIRM Approach to Active Listening(Stirling et al, 2011)
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.
Possible responses Using AFIRM
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
Acknowledgements
Thank you and QuestionsFor more information:
Deirdre [email protected]
People with dementia and carers who have contributed and advised IHF
IHF Changing Minds Team Project and Expert Advisory and
Governance Groups Atlantic Philanthropies