We know that many GPs feel uncomfortable discussing end of life issues. Society is in denial about death, and talking about it remains taboo. The 2013 annual British Public Attitudes Survey found that only one in three patients have a will. Despite 70% claiming that they are comfortable talking about death, the same proportion of patients admits that it has not discussed anything with family or friends. By having such conversations, it can help patients be more in control.
At my practice, a colleague of mine and I wanted to do more to support members of the local community in having such conversations. We believe that they can be held in a social as well as in a medical context.
We felt that a community-based approach was most appropriate in order to encourage patients to have conversations around their kitchen tables with friends or family, about issues to do with death, dying and bereavement. I gathered a small group of patients from the local community who had an interest in this area. The original group included a community association representative, a district nurse, a church leader, and a community palliative care specialist nurse in addition to myself and another doctor.
What we did
The group met to define the aim of the project, to give it a name, and to plan how to move forwards. Our logo was designed by a sixth former in a local school.
The first public event was manning a stand at a local ‘Senior Health Fair’. We answered questions, listened, and had leaflets available from Dying Matters and from the NHS organ and tissue donation scheme, as well as copies of ‘Planning your future care – a guide’ (National End of Life Care Programme).
To launch the project we held a workshop in the community, inviting local residents to help shape the way the project should move forward. Coverage by the local media was incredibly helpful. As a result of the workshop we planned a series of local events.
During Dying Matters week in May we presented the play ‘Home Death’ by Nell Dunn, followed by a panel discussion. This event was a sell out, indicating to us the latent interest there is to address end of life issues and to have an opportunity to discuss them.
The local library agreed to host a photographic exhibition (‘Small Actions, Big Difference’ by Nadia Bettega) that captured the way patients respond to conversations about death.
We started to run the Finity Cafe, to give patients an opportunity to pick up information about planning for the end of life, and to talk about it too – with coffee and cake.
The initiative cost little to set up, events were generally hosted for little or nothing, and any costs were met by myself and by colleague.
The subject matter can cause quite polarised responses, and dealing with these in a sensitive and appropriate way can be challenging. However the overwhelmingly positive response from many has been very encouraging. It remains a challenge to provide the right forum for raising these issues for various members of the community – to reach those of all ages in an appropriate way.
We have no figures to demonstrate that the actions we have taken have made any difference to individual’s experience at the end of life, or their families. We do not know whether their preferred place of care has been met more often.
However, we do know that there is a desire to talk about the important issues to do with end of life, and when they do this patients appear to feel more in control. There have been more conversations about end of life issues than there would otherwise have been (more than 100 patients have come to various events we held, and many patients have taken home leaflets to read). Local awareness of such issues is certainly higher than it was before we started.
We have now established an operational group and a trustee group. Our future plans include developing a series of talks, in addition to going to speak to different community groups. We have developed a website (www.finity.org.uk) with information and links to both local community initiatives and national groups. We would be very happy to talk to others who are interested in setting up a similar group in their locality.
Dr Jo Withers is a GP in Wendover, Buckinghamshire.