Feel the Fear - Learning from Dying Matters Conversation Pilots

Hilary Fisher Lorna PotterDirector, Dying Matters Community Development Adviser

Dying Matters and NCPC

The challenges

• Talking• We don’t talk about dying and death - impacting on our end of life choices

• Only 29% of people talked about their wishes in 2009 - less than in 2006 (34%)

• Planning• 500,000 people die each year in England – 58 % in hospitals, yet 70% of

people would like to die at home

Method - Coalition

• Dying Matters Coalition - set up by NCPC• No quick fixes – medium to long time frame• Rationale – social marketing - shifting social norms requires a

broad range of organisations using their combined influence• Enables reach and support of wide range of groups - 14,000

members across a range of sectors

• Our Mission:“Support changing knowledge, attitudes and behaviours towards

death, dying and bereavement, and through this to make ‘living and dying well’ the norm.”

GPs

• 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

Patients

• Patients who feel they are given inadequate information (too little or too much) are at greater risk of affective disorders

Fallowfield et al 1990, Butow et al 1995, Schofield et al 2003

• Patients who have all their questions answered report illness having less impact on their lives than those whose questions remain unanswered

Butow et al 2002

Aims of Dying Matters GP Pilot

• Support GPs in their initial discussions about a patient’s wishes when the subjects of dying, death and bereavement arise

•Focus on raising awareness and on the knowledge and behaviour of GPs as key influencers

Success measures

• Number of patients with whom the GP has discussed end of life

• A GP’s confidence in initiating and having conversations with appropriate patients

• Action has been put into place as a result of the conversation• GP rating on the usefulness of materials designed to assist

with conversations• Patient’s views on the helpfulness of materials• Number of patients on the Palliative Register

Pilot participation - Participants and responses

• Number Practices participating 24• GPs participating [GPs recruited] 59 [63]• GPs attended preliminary workshop 25• GPs returning completed pre-pilot questionnaire 46• GPs returning completed post-pilot questionnaire 53• GPs returning completed pre- & post-questionnaire 41• Practices undertaking & returning a Death Audit 18• Records of conversations between GP and patient 155• GPs willing to be involved in ongoing work 40• Patient questionnaires returned 21

InterventionWorkshops for GPsCommunication skills training

GP involvement in developing a suite of communications materials to support conversations about end of life

Methodology

Data collectionGP Questionnaire (pre and post pilot) Patient QuestionnaireConversation and Action Record SheetDeath Audit

Type of illnessDiseases and circumstances in patients, family members and carers with whom GPs discussed end of life

Stage of illnessStage of disease and circumstances in patients, family members and carers with whom GPs discussed end of life

Conversation triggersThe triggers for 155 conversations with patients, family members and carers when GPs discussed end of life

Continuing the conversation

Response of patient to conversation142 chose to continue the conversation13 rejected the conversation

Nine times out of ten, patients will continue the conversation about end of lifeGender responses:79 females chose to continue the conversation, 5 rejected it 58 males continued the conversation, 8 rejected it

Actions taken by GPs following a conversation

Change in GP confidenceChange in all GPs’ self-rated confidence in starting and having conversations pre and post pilot

May 2010 (n = 46) Sept 2010 (n = 53)

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- Essex or Blackpool (TBC)- South Central

• Other interested GP Consortia:- Manchester- Oxfordshire - Sheffield- Dorset

What You Can Do

• How many have you have written a will?

• How many of you have written down preferences for your death - a record of your wishes?

• How many of you believe dying and death should be discussed in advance?