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www.dyingmatters.org or call freephone ... start planning for our death: in fact,
only one in ten of us ... wishes. Sometimes it helps to start with something direct.
L7/10.10/WEB1. To find out how to get more help visit: www.dyingmatters.org or
call freephone. 08000 21 44 66. The National Council for Palliative Care.
close to someone who is old or ill. No one wants to talk about dying. But if
someone close to you is old or ill, it's a subject you may feel you have to raise
soon.
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when time is so short? Should you call? And what can you possibly say to them
under the circumstances? #6. Starting the conversation if someone close to you ...
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Aug 21, 2014 - the BBC including BBC One's Breakfast programme, and ..... Facebook www.facebook.com/dyingmatters Twitter
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when Elisabeth Kubler-Ross published On Death and Dying, a book based on ....
dying person the control over their dying, allowing them to live until they die.
An excerpt from ... This proliferation of coalition-based community initiatives has provided an ... coalition-based community interventions in recent years. Neither ...
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•A GP's confidence in initiating and having conversations. •Action put into place
as a result of the conversation. •GP rating on the usefulness of materials.
The Dying Matters Coalition Professor Mayur Lakhani, Chair Hilary Fisher, Director
www.ncpc.org.uk
Dying Matters GP Pilot Project Aim: •Support GPs in conversations with patients & relatives about dying
Knowledge: •31% of public want information about EoLC from their GP •75% of GPs agree they should encourage patients to plan for EoLC, yet, only: • 5% of GPs have written a living will • 42% have discussed organ donation • 23% have discussed their funeral plans
www.ncpc.org.uk
Success Measures •Number of patients GP discussed end of life with •A GP’s confidence in initiating and having conversations •Action put into place as a result of the conversation •GP rating on the usefulness of materials •Patient’s views on helpfulness of materials •Number of patients on Palliative Register www.dyingmatters.org
Intervention
Methodology
•Workshops for GPs •Communication skills training •GP involvement in developing materials to support conversations on end of life
•Data Collection •GP Questionnaire (pre and post pilot) •Patient Questionnaire •Conversation and Action Record Sheet •Death Audit
www.ncpc.org.uk
www.dyingmatters.org
Type of illness Diseases and circumstances in patients, family members and carers with whom GPs discussed end of life
Elderly, frail Dementia Cancer
Vascular disease COPD Bereavement Other 0
20
40
www.ncpc.org.uk
60
80
Patients
100
120
140
160
Not ill
www.dyingmatters.org
Conversation triggers The triggers for 155 conversations with patients, family members and carers when GPs discussed end of life 3%
3%
2%
Diagnosis
14%
Prognosis Deterioration in condition
3%
26%
Patient question about future, death or dying Carer question about future, death or dying
8%
Patient in pain, distressed, anxious Death, bereavement Ageing
15% 16% 10%
www.ncpc.org.uk
Other Not recorded
www.dyingmatters.org
80
Actions taken by GPs following a conversation 69
70
Gave out leaflets
Number of conversations
60
Gave Out 5 Things To Do Gave Out Remember When We
50
48 45 41
40
40
38
ACP
39
Family conversation Subsequent conversation planned
29
30
27
Gave out To Do List
27
Preferred place of care recorded
23
DNAR discussed
20 20
DNAR recorded 10
Patient put on EoLC register
9 5
Palliative care started No action taken
0
Actions recorded following a conversation about end of life
www.ncpc.org.uk
Other
www.dyingmatters.org
Confidence •Pre-pilot: •60% of GPs rated themselves either ‘not confident’ or ‘not very confident’ in initiating conversations •33% rated themselves either ‘not confident’ or ‘not very confident’ when having conversations
•Post-pilot, •86% of GPs rated themselves as ‘confident’ or ‘very confident’ when starting conversations •90% rated themselves as ‘confident’ or ‘very confident’ when having conversations
www.ncpc.org.uk
www.dyingmatters.org
Evaluation results:
Phase two:
•It is possible to increase GPs confidence in having conversations
•4 sites:
•Conversations resulted in actions which contribute to a good death •The Dying Matters communication materials were useful to GPs and helpful to patients www.ncpc.org.uk
-
Devon Somerset Blackpool South Central
•Other interested GP Consortia: -
Manchester Oxfordshire Sheffield Dorset
Progress with Evidence and measurement Research: Literature Review NatCen Quant Survey
Regional surveys & qualitative Data
ICM Omnibus Quant Survey
You Gov Quant Survey
www.ncpc.org.uk
NFP Synergy Qualitative Data
DM members Surveys
ACP Stakeholders Survey
Insights • • • • • • •
We don’t talk about dying If we do it is to make life easier for friends and family It is several conversations not just one Need to start with practicalities We are reserved about talking about dying Advance Care Planning is hard-even for experts More accessible and clear language is needed
www.ncpc.org.uk
From Coalition members
Members think Dying Matters has: • • • •
Developing the coalition well - 62% Highlight the need for discussion 78% Produced helpful materials and events 74% Kept coalition members well informed 68%
And that: • Dying Matters Awareness Week 2010 was useful opportunity to raise awareness 61% www.ncpc.org.uk
Measurement • Key Performance Indicators: • Changes in attitudes – Public survey • Success of Coalition – Members survey • Online engagement – Website, facebook etc. surveys
www.ncpc.org.uk
What are you doing for Dying Matters Awareness Week 16 – 22 May?
