The Dying Matters Coalition Professor Mayur Lakhani, Chair Hilary Fisher, Director
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 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 Workshops for GPs Communication skills training GP involvement in developing materials to support conversations on end of life Methodology Data Collection GP Questionnaire (pre and post pilot) Patient Questionnaire Conversation and Action Record Sheet Death Audit 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 0 20 40 60 80 100 120 140 160 Patients Other Not ill www.dyingmatters.org
Conversation triggers The triggers for 155 conversations with patients, family members and carers when GPs discussed end of life 14% 3% 3% 2% Diagnosis Prognosis 8% 3% 15% 26% Deterioration in condition Patient question about future, death or dying Carer question about future, death or dying Patient in pain, distressed, anxious Death, bereavement Ageing 16% Other 10% Not recorded www.dyingmatters.org
Number of conversations 80 Actions taken by GPs following a conversation 70 69 60 50 45 41 40 40 39 38 30 29 27 27 23 20 20 10 9 5 0 Actions recorded following a conversation about end of life 48 Gave out leaflets Gave Out 5 Things To Do Gave Out Remember When We Gave out To Do List ACP Family conversation Subsequent conversation planned Preferred place of care recorded DNAR discussed DNAR recorded Patient put on EoLC register Palliative care started No action taken 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.dyingmatters.org
Evaluation results: It is possible to increase GPs confidence in having conversations Conversations resulted in actions which contribute to a good death The Dying Matters communication materials were useful to GPs and helpful to patients Phase two: 4 sites: - Devon - Somerset - Blackpool - South Central Other interested GP Consortia: - Manchester - Oxfordshire - Sheffield - Dorset
Progress with Evidence and measurement Research: NatCen Quant Survey Literature Review NFP Synergy Qualitative Data ACP Stakeholders Survey Regional surveys & qualitative Data ICM Omnibus Quant Survey You Gov Quant Survey DM members Surveys
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
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%
Measurement Key Performance Indicators: Changes in attitudes Public survey Success of Coalition Members survey Online engagement Website, facebook etc. surveys
What are you doing for Dying Matters Awareness Week 16 22 May?