Feel the Fear  -  Learning from Dying Matters Conversation Pilots Hilary Fisher Lorna Potter Director, Dying Matters   Com...
The challenges <ul><li>Talking </li></ul><ul><ul><li>We don’t talk about dying and death - impacting on our end of life ch...
Method - Coalition <ul><li>Dying Matters Coalition  - set up by NCPC </li></ul><ul><li>No quick fixes – medium to long tim...
GPs  <ul><li>31%  of public want information about EoLC from their GP </li></ul><ul><li>75%  of GPs agree they should enco...
Patients <ul><li>Patients who feel they are given inadequate information (too little or too much) are at greater risk of a...
Aims of Dying Matters GP Pilot  <ul><li>Support GPs in their initial discussions about a  patient’s wishes when the subjec...
Success measures <ul><li>Number of patients with whom the GP has discussed end of life </li></ul><ul><li>A GP’s confidence...
Pilot participation -  Participants and  responses <ul><li>Number Practices participating    24 </li></ul><ul><li>GPs part...
Intervention Workshops for GPs Communication skills training GP involvement in developing a suite of communications materi...
Methodology Data collection GP Questionnaire (pre and post pilot)  Patient Questionnaire Conversation and Action Record Sh...
Type of illness Diseases and circumstances in patients, family  members and carers with whom GPs discussed  end of life
Stage of illness Stage of disease and circumstances in patients,  family members and carers with whom GPs  discussed end o...
Conversation triggers The triggers for 155 conversations with patients, family members and carers when GPs discussed end o...
Continuing the conversation <ul><li>Response of patient to conversation </li></ul><ul><li>142 chose to continue the conver...
Actions taken by GPs following a conversation
Change in GP confidence Change in all GPs’ self-rated confidence in starting  and having conversations pre and post pilot ...
<ul><li>Evaluation results: </li></ul><ul><li>It is possible to increase GPs confidence in having conversations </li></ul>...
What You Can Do
<ul><li>How many have you have written a will? </li></ul><ul><li>How many of you have written down preferences for your de...
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Dying Matters: Feel the fear, and have the conversation anyway

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Presentation on a short training project and supporting materials for GPs and other health professionals proven to boost confidence and improved end of life care. From Hilary Fisher and Lorna Potter from England's Dying Matters coalition as part of the Department of Health's QIPP end of life care workstream seminar series at Healthcare Innovation Expo 2011.

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  • NCPC the umbrella charitable body for palliative care: Influences government policy; Supports all sectors involved in providing, commissioning and using hospice and palliative care services; Promotes palliative care for all; Provides guidance on best practice Members of Dying Matters include: NHS, voluntary and independent health and care sectors, including hospices, care homes, charities supporting old people, children and bereavement, from social care and housing sectors, faith organisations, community organisations, schools and colleges, academic bodies, trade unions, the legal profession and from the funeral sector Our members are working together to encourage people to talk about their wishes including where they want to die and their funeral plans with friends, family and loved ones
  • We ran a 4 month project with 24 GP practices – 59 GPs - participating - Support GPs in their conversations with patients &amp; relatives about dying/death - Pilot communications materials that will assist GPs in communications with patients &amp; relatives and the utility of the materials from a patient perspective in initiating and assisting with discussions about death, dying and bereavement.
  • The evaluation included: GPs GP assessment of the utility and usefulness of the materials developed to help with : -Initiating appropriate conversations -Having approximate conversations GP views on the design of materials The numbers of people with whom GPs have initiated conversations. GP confidence / willingness to initiate conversations GP confidence whilst having conversations   Patients Patient’s views on the helpfulness of material used by GP. Patient’s views on the helpfulness of patient directed material. Patients views on the design of materials.  
  • In 27 of the 155 conversations, DNAR was both discussed and recorded in the patient’s notes.
  • Dying Matters: Feel the fear, and have the conversation anyway

    1. 1. Feel the Fear - Learning from Dying Matters Conversation Pilots Hilary Fisher Lorna Potter Director, Dying Matters Community Development Adviser Dying Matters and NCPC
    2. 2. The challenges <ul><li>Talking </li></ul><ul><ul><li>We don’t talk about dying and death - impacting on our end of life choices </li></ul></ul><ul><ul><li>Only 29% of people talked about their wishes in 2009 - less than in 2006 (34%) </li></ul></ul><ul><li>Planning </li></ul><ul><ul><li>500,000 people die each year in England – 58 % in hospitals, yet 70% of people would like to die at home </li></ul></ul>
    3. 3. Method - Coalition <ul><li>Dying Matters Coalition - set up by NCPC </li></ul><ul><li>No quick fixes – medium to long time frame </li></ul><ul><li>Rationale – social marketing - shifting social norms requires a broad range of organisations using their combined influence </li></ul><ul><li>Enables reach and support of wide range of groups - 14 ,000 members across a range of sectors </li></ul><ul><li>Our Mission: </li></ul><ul><ul><li>“ Support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make ‘living and dying well’ the norm .” </li></ul></ul>
    4. 4. GPs <ul><li>31% of public want information about EoLC from their GP </li></ul><ul><li>75% of GPs agree they should encourage patients to plan for EoLC, yet, only: </li></ul><ul><ul><ul><li>5% of GPs have written a living will </li></ul></ul></ul><ul><ul><ul><li>42% have discussed organ donation </li></ul></ul></ul><ul><ul><ul><li>23% have discussed their funeral plans </li></ul></ul></ul>
    5. 5. Patients <ul><li>Patients who feel they are given inadequate information (too little or too much) are at greater risk of affective disorders </li></ul><ul><li>Fallowfield et al 1990, Butow et al 1995, Schofield et al 2003 </li></ul><ul><li>Patients who have all their questions answered report illness having less impact on their lives than those whose questions remain unanswered </li></ul><ul><li>Butow et al 2002 </li></ul>
    6. 6. Aims of Dying Matters GP Pilot <ul><li>Support GPs in their initial discussions about a patient’s wishes when the subjects of dying, death and bereavement arise </li></ul><ul><li>Focus on raising awareness and on the knowledge and behaviour of GPs as key influencers </li></ul>
    7. 7. Success measures <ul><li>Number of patients with whom the GP has discussed end of life </li></ul><ul><li>A GP’s confidence in initiating and having conversations with appropriate patients </li></ul><ul><li>Action has been put into place as a result of the conversation </li></ul><ul><li>GP rating on the usefulness of materials designed to assist with conversations </li></ul><ul><li>Patient’s views on the helpfulness of materials </li></ul><ul><li>Number of patients on the Palliative Register </li></ul>
    8. 8. Pilot participation - Participants and responses <ul><li>Number Practices participating 24 </li></ul><ul><li>GPs participating [GPs recruited] 59 [63] </li></ul><ul><li>GPs attended preliminary workshop 25 </li></ul><ul><li>GPs returning completed pre-pilot questionnaire 46 </li></ul><ul><li>GPs returning completed post-pilot questionnaire 53 </li></ul><ul><li>GPs returning completed pre- & post-questionnaire 41 </li></ul><ul><li>Practices undertaking & returning a Death Audit 18 </li></ul><ul><li>Records of conversations between GP and patient 155 </li></ul><ul><li>GPs willing to be involved in ongoing work 40 </li></ul><ul><li>Patient questionnaires returned 21 </li></ul>
    9. 9. Intervention Workshops for GPs Communication skills training GP involvement in developing a suite of communications materials to support conversations about end of life
    10. 10. Methodology Data collection GP Questionnaire (pre and post pilot) Patient Questionnaire Conversation and Action Record Sheet Death Audit
    11. 11. Type of illness Diseases and circumstances in patients, family members and carers with whom GPs discussed end of life
    12. 12. Stage of illness Stage of disease and circumstances in patients, family members and carers with whom GPs discussed end of life
    13. 13. Conversation triggers The triggers for 155 conversations with patients, family members and carers when GPs discussed end of life
    14. 14. Continuing the conversation <ul><li>Response of patient to conversation </li></ul><ul><li>142 chose to continue the conversation </li></ul><ul><li>13 rejected the conversation </li></ul><ul><li>Nine times out of ten, patients will continue the conversation about end of life </li></ul><ul><li>Gender responses: </li></ul><ul><li>79 females chose to continue the conversation, 5 rejected it </li></ul><ul><li>58 males continued the conversation, 8 rejected it </li></ul>
    15. 15. Actions taken by GPs following a conversation
    16. 16. Change in GP confidence Change in all GPs’ self-rated confidence in starting and having conversations pre and post pilot May 2010 ( n = 46) Sept 2010 ( n = 53)
    17. 17. <ul><li>Evaluation results: </li></ul><ul><li>It is possible to increase GPs confidence in having conversations </li></ul><ul><li>Conversations resulted in actions which contribute to a good death </li></ul><ul><li>The Dying Matters communication materials were useful to GPs and helpful to patients </li></ul><ul><li>Phase two: </li></ul><ul><li>4 sites: </li></ul><ul><ul><ul><li>Devon </li></ul></ul></ul><ul><ul><ul><li>Somerset </li></ul></ul></ul><ul><ul><ul><li>Essex or Blackpool (TBC) </li></ul></ul></ul><ul><ul><ul><li>South Central </li></ul></ul></ul><ul><li>Other interested GP Consortia: </li></ul><ul><ul><ul><li>Manchester </li></ul></ul></ul><ul><ul><ul><li>Oxfordshire </li></ul></ul></ul><ul><ul><ul><li>Sheffield </li></ul></ul></ul><ul><ul><ul><li>Dorset </li></ul></ul></ul>
    18. 18. What You Can Do
    19. 19. <ul><li>How many have you have written a will? </li></ul><ul><li>How many of you have written down preferences for your death - a record of your wishes? </li></ul><ul><li>How many of you believe dying and death should be discussed in advance? </li></ul>

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