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End of Life Care for People with Dementia: After the Liverpool Care Pathway Dr Nathan Davies 11 th February 2016
End of Life Care for People with Dementia: After the Liverpool Care
Pathway
Dr Nathan Davies
11th February 2016
Dementia across the world and UK • New case diagnosed every 3 seconds
• 700 million people with dementia across
the world in 2009
• 800,000 currently living with dementia in the UK
• As yet no known cure
End of life for someone with dementia
• Is it the last 12 months? • Symptoms:
–Increased infections –Incontinence –Shortness of breath –Swallowing difficulties
Controversy
ONE CHANCE TO GET IT RIGHT 5 Priorities of care 1. Recognition of dying and clear
communication
2. Sensitive communication between staff and dying person
3. Dying person and those important to them involved in decisions
4. Needs of family and others important to the dying person are explore, respected and met as far as possible.
5. Individual care plan agreed upon and delivered with compassion
Previous work • Recognition of the
importance of families
• 46 family carers interviewed about their views on quality of care
• Former and current carers across England
Current work • What’s the alternative to another pathway or
another guideline?
• Are rules of thumb the answer?
Building rules-of-thumb 1. What does research tell us
about decisions?
2. What do practitioners think are the difficult decisions and how do they make them?
3. What do family carers think are the difficult decisions and how should they be made?
Key decisions – rules-of-thumb
1. Swallowing and eating difficulties
2. Agitation and restlessness
3. Ending life sustaining treatment
4. Providing routine care
Eating and Swallowing Difficulties 1 Don’t let eating/swallowing problems come as a surprise (ensure conversation has occurred with the person with dementia and family early, around the time of diagnosis). Consider advance care planning (ACP)
Is this an emergency?
Yes No
Stop feeding call for help Move to rule 3
2 3 Is dementia the cause of the
eating/ swallowing difficulties?
*‘Comfort feeding only’
**Stop feeding, consider if there is a reversible cause?
Yes
‘Time-trialled NG’
Yes No
‘Comfort feeding only’
No
Agitation and Restlessness
What has changed? (speak with and seek help from families/advocate)
Look for an underlying cause (don’t always attribute it to the dementia)
Is there an environmental/ social cause?
Is there a physical cause?
Check the health and wellbeing of the carer
No identifiable cause o Trial of analgesia o Is there a non-pharmacological treatment?
( i.e. music therapy, massage, aromatherapy)
o Trial of antipsychotic medication (after discussion with family)
o Seek specialist help
Ending life sustaining treatment 1 Towards the end of life, only continue or initiate treatment that is likely
to maintain comfort or have a positive impact on quality of life
2 Is the current treatment still needed?
Yes No Remember discuss with family
Continue with current treatment regime
Stop treatments one at a time
Review comfort and quality of life after any change in treatment ; be prepared to reinstate treatments (as it is not always clear beforehand if something is having an impact on comfort and quality of life)
Providing Routine Care Discuss with family/advocate regarding what is an acceptable level of care and how best to provide it?
1
Is this a recurring issue? If yes go to
rule 1
3
Make adaptations
Is routine care causing distress?
Can the way that care is being administered be adapted to better suit the persons’ needs?
Yes No
Provide routine care with the goal of maintaining comfort and dignity
Yes No
Be willing to try again later Do the minimum for that day
2
What next?
• Test the rules-of-thumb with 5 different teams – Hospital ward – 2 Community palliative care teams – Community nursing team – General practice
Questions/ lessons/ difficulties so far • Complex situations and decisions not so
easy to simplify into a rule
• Can these be fast decisions – no not all!
• Who are these for?
Thank you [email protected]
Twitter: @nathandavies50
@caps_ucl @ucl_pcph
Study team: Prof Steve Iliffe, Kethakie Lamahewa, Prof Jill Manthorpe, Dr Rammya Mathew, Dr Liz Sampson and Jane Wilcock This research was supported by funding from the Alzheimer’s Society grant number AS-PG-2013-026 and by the Marie Curie Research Programme, grant C52233/A18873. The views expressed here are those of the authors and not of the Alzheimer’s Society or Marie Curie.
