evidem-eol end of life care for people with dementia
DESCRIPTION
EVIDEM-EOL End of life care for people with dementia. An intervention to promote integrated working between care home staff and health care practitioners. C Goodman (Hertfordshire), E Mathie (Hertfordshire) C Nicholson (King’s) , S Amador (Hertfordshire). PRESENTATION. Background/Aims - PowerPoint PPT PresentationTRANSCRIPT
EVIDEM-EOL End of life care for
people with dementia
C Goodman (Hertfordshire), E Mathie (Hertfordshire)C Nicholson (King’s) , S Amador (Hertfordshire)
An intervention to promote integrated working between care home staff and health care practitioners
PRESENTATION
Background/Aims
Phase one overview
Co-design approach: Appreciative Inquiry
Findings
Implications for dementia research
2
AIMS OF EVIDEM EOL
Phase1 to explore and document the need for support and end of life care of older people with dementia living in a care home (CH) with no on site nursing
Phase2 (based on phase one findings) develop an intervention that encourages integrated working between care home providers and primary care health services to provide end of life care for older people with dementia
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PHASE 1 (2008-2010) 133 older people w/ dementia living in 6 care homes;
27 deaths (20.3%) over 18 months;
Majority had seen a general practitioner (GP) and/or district nurse (DN) at least once
Multiple Pathways to dying
EOL trajectories unclear to CH staff, family members and visiting health practitioners
Palliative care tools (e.g. GSF, Liverpool Care Pathway) seldom used
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Dealing with uncertainty and shared decision making key issues for care home staff and visiting health practitioners
CO DESIGN INTERVENTION: APPRECIATIVE INQUIRY (AI)
Roots in action research Assumes in every organisation
something works well Asking unconditional questions to produce stories of
individuals and organisations at their best Stories discussed to create new ideas that support
create change Conceptualised as an AI cycle
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ESTABLISHING CAPABILITY
Feedback of phase one findings to 6 care homes
3 of the 6 care homes and linked NHS staff = intervention
3 Appreciative Inquiry (AI) sessions were held in each of the care homes
Sessions held over a period of 6 months from January to June 2011
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Three sessions•Stories of excellence and aspirations for what good end of life care for people with dementia might look like
•Appreciate the world from another point of view including the person with dementia (NB multiple views)
•Reviewing progress and strategies for change
: 7
Session 2: Gaining perspective/defining roles in collaborative working
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Participant developed tools Rapid engagement between CH and visiting NHS staff unused to
working together greater understanding of respective roles in caring for the older person with dementia
AI enabled participants to develop/adapt together the following tools: A script for discussing EOL wishes with relatives A tool to support discussions with out of hours services A GP led implementation and audit of advance care planning in
collaboration with care staff Pain management and use of sedatives was an issue from phase
one findings but participants did not choose to address symptom management for people with dementia
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IMMEDIATE CHANGES Quality of contacts (e.g. coffee mornings for district nursing service) and accessibility
(direct lines to DN) Focus on EOL on routine GP visits to the care home (GP & CH manager joint reviews
of residents rather than only those who need immediate attention) Care home staff, family and GP involvement in EOL discussions Recognition of care home staff knowledge and capability (DNs attending Dementia
training at care home) EOL framework utilisation and palliative support tools (e.g. East of England DNACPR
protocol)
Economic evaluation (n=28 residents who participated in Phases 1 & 2; % change in terms of median costs) Significant decrease in Hospital contacts and associated costs (-45%) No significant change in Primary care contacts and associated costs
(+10%)
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LONG TERM CHANGES/CARE HOME CULTURE
Changed superficial unchallenging conversations
Allowed professional vulnerability & encouraged trust
Views of a care home’s remit changed Continuity and collaboration on planning and
discussing EOL care
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So….
The intervention supported a shift in care home culture that could mitigate
uncertainties inherent to end-of-life care of older people with dementia
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AI SYNERGY WITH DEMENTIA RESEARCH
Avoids a deficit model of care; works with existing capacity and people’s stories
Avoids stigma and stereotyping of poor care Focus on relationships not hierarchies; co-design
and negotiated outcomes with the care home at the centre
Focus on continuity and review Enables research across organisations and settings Change oriented
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ISSUES
Built on phase one workSkilled facilitationCommitment to participation in
care homeCapturing data and making
causal links
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Acknowledgements
Many thanks to residents, care staff & NHS staff who gave up their time to
take part in this research For more information contact [email protected] or visit
www.evidem.org.uk
This study has received financial support from the National Institute for Health Research (NIHR) Programme Grants for Applied Research funding scheme. The views and opinions
expressed therein do not necessarily reflect those of Central & North West London NHS Foundation Trust, the NHS, the NIHR
or the Department of Health15