THE GW4 VALUE OF DEATH NETWORK
Project period: September 2018 – January 2019
GW4 community leads
University of Bath: Malcolm Johnson
University of Bristol: Jane Blazeby (PI)
Cardiff University: Jenny Kitzinger
University of Exeter: Katrina Wyatt & Robin Durie
This GW4 Network will address the global challenge of the critical relationships between medicine, living well, dying and death. It will examine how the process of dying is being medicalised and the implications of current practices for different populations.
Surveys find that most people are not comfortable talking to somebody who has a friend or relative who has died, and many general practitioners have not talked to someone about their end-of-life wishes. Furthermore, training on how to talk about de-escalating interventions and the process of dying is lacking. A quarter of deaths take place in care homes which have the advantage of dying among known people and in familiar surroundings. There is evidence of very good end of life care in such homes, but also of places where staff are ill-equipped to address end-of-life decision making. In hospital and nursing home settings sometimes dying becomes high profile in the pursuit of immortality against the odds and legal action required to allow implementation of humane end-of-life care. A change in cultural and medical attitudes to death and dying is required which is informed by all sectors of society, including those whose voices are considered ‘hard to reach’.
There is “a culture of medical excess” resulting in difficult decisions on when to treat and when to “say no”. It requires values to be placed on life and death. Despite the popular success of some recent books, medicine and society still struggle to talk about death and dying. Little research has been done on what dying well means especially for populations with difficulties in living well.
The community held a meeting with GW4 researchers, regional stakeholders and international collaborators in Bristol to define positions and cultural attitudes to the value of death. This included a sell-out public lecture. Following this successful meeting the community met to develop the Lancet Commission on the Value of Death (website below) and identify further areas to build on for future research.