70% of individuals wish to die at home but most die in hospital and this is often because the individual’s needs and desires at the time of death are not discussed. A new movement is trying to change that by facilitating conversation about death.
The concept, based on the work of Swiss sociologist Bernard Crettaz, was developed by Jon Underwood, who runs a non-profit company that provides services related to death, such as how to build websites about the subject.
Underwood and his mother, a psychotherapist, held the first death cafe in September 2011. The phenomenon spread, and there are now more than 4,230 cafes held in 45 countries. The goal is to have a conversation about the end of life and preparations for it in a setting that is not geared toward any specific ideology, religion or point of view.
Helping medical students discuss death less clinically
In palliative care, doctors forge a relationship with their patients over time and so in an effort to avoid causing pain to their patients and discomfort to themselves, doctors sometimes gloss over the topic of death. However the inherently uncomfortable topic of death should not be allowed to be a barrier between doctor and patient.
"When people sit down to talk about death, the pretense kind of falls away, and people talk very openly and authentically," Underwood says. Once the initial conversation is started, doctors must help identify end-of-life goals and develop a care plan.
For medical student Isabella Laws, the café was an opportunity to learn how to talk about death in more open and less clinical manner. “I went because there is a fundamental lack of teaching at medical school to prepare you for the fact that this is something I will have to deal with every day as a doctor,” she said.
Breaking bad news is not taught enough
Laws attended one death café session in which there were five other attendees: two academic psychologists, a woman who had lost her husband in her early thirties, a grief counsellor and a man who had had a near-death experience. The conversations are unstructured but a group leader ensures they are about death. The cafes are not physical cafes but temporary events.
“In six years of study, I will have had just one small group session on “breaking bad news. Yet as soon as I am qualified, I will be expected to talk about death and dying to patients and their loved ones on a daily basis,” Laws said.
A survey of junior doctors conducted by the Royal College of Physicians of Edinburgh in 2013 found that a mere 50% felt prepared for communicating with dying patients and their families. This deficit of schooling shortchanges not just students, but patients, too. A lack of supervision also means that junior doctors are forced to learn on the job.
Poor communications adds to the patients’ trauma
Although they will undoubtedly, improve over time there are patients and families who will experience unsatisfactory or even upsetting communication along the way. Laws says, “I have witnessed good practice during my training, but there have also been times when I wished I wasn’t in the room.”
“Last year, while sitting in on a neurology clinic, I watched as a patient was told they had motor neurone disease. Their face went blank and pale with shock, but the doctor seemed oblivious and launched into a monologue about the patient’s treatment options and prognosis,” she explained.
Death cafes are not a solution to lack of teaching, but they are a good place to start and medical students my benefit from attending one. Only through practising can doctors hope to be effective and sensitive communicators when the time comes. MIMS
Palliative care: Why patients deserve the truth
The role of a GP in death and dying
End-of-life care: Knowing the difference between saving lives and postponing death