Bringing death 'out of the shadows'

But last month more than 30 people gathered to do just that, at a Death Cafes held at Bradford's Marie Curie hospice.

It followed Dying Matters Week, which was aimed at promoting open discussion about death, dying and bereavement.

Here, Laura Middleton-Green, Marie Curie clinical academic research fellow in end of life care, University of Bradford, talks about how death cafes offer a framework to prepare for the end of life.

"I have experienced at first hand the implications of not talking about death and dying. As a Palliative Care Clinical Nurse Specialist, my job was to help people with life-limiting illnesses such as cancer, and their families, prepare for the inevitable. For some, this meant making difficult decisions about the kinds of treatment they would and wouldn't want. Others prioritised family matters - finances, funerals, care.

"These conversations are never easy. Perhaps they became more difficult because things needed to be talked about at a time when people are upset, angry, worried or sad.

"Talking about our wishes is something that need not wait until you have a terminal illness. But there are very few spaces where it feels comfortable to talk about death and dying. Why think about dying when you are healthy and otherwise occupied with the daily concerns of life?

"One of the aims of the Dying Matters Coalition is to increase the opportunities to have these conversations, not just with those who are dying or their carers, but with everybody. Dying Matters Week saw a range of events to bring death out of the shadows, help make it a subject that people feel they can talk about.

"In 2014 a few staff and students at the University of Bradford decided to start group entitled 'Let’s Talk Death'. The group has since organised three conferences and three Death Cafes. Its membership now includes members of the public, and staff from the Marie Curie Bradford hospice.

"Death Cafés originated with Bernard Crettaz’s book Cafe Mortel, in which he claims that the lack of conversation about death and dying is harming society.

"This year for the first time we decided to organise a Death Cafe in a hospice. The idea was initially greeted with some concerns. Won’t it put people off coming to a hospice? But hospices aren't simply places of dying; their aim to help people to live as fully as they can until they die. The hospice is often the place where these kinds of conversations happen with people facing their own death.

"The Death Cafe was attended by over 30 people, including hospice day therapy patients, staff, nursing students, chaplains, funeral directors and people living with advanced terminal illnesses. One man with terminal cancer had travelled from 15 miles away when he saw the advert for the event, because 'Where else can I go to talk about this stuff?'

"It was an opportunity for people in different professional roles to meet; student nurses spoke to hospital chaplains, a hospice staff nurse talked with a funeral director, a member of the hospice’s administration staff talked with a university employee. These kinds of connections could not have taken place without the space offered by the Death Cafe.

"People talked about all manner of things. A woman, reflecting on her recent bereavement, commented that grief never seems to end and sometimes “you feel like you can’t keep going on about it with colleagues.” A man talked about his experience visiting a retreat centre in France for people with cancer, and recommended it to a patient who decided she would find out about it for herself.

"I overheard a conversation where funeral songs were being planned: 'I want them to have a good time, more like a party than a funeral.' And I heard discussions about topics that often feature in the media and spark many worries for people living with advanced illness - resuscitation, treatments, hospitals and morphine.

"A blackboard with the title 'Before I Die I Want To…' sparked several conversations. Along with the usual bucket list topics were other, more poignant wishes, such as 'I want to be content.'

"The Death Cafe was run on a voluntary basis. Students and staff baked cakes around the clock and the hospice donated tea and coffee and the use of its day therapy unit.

"My most enduring reflection on the Death Cafe was the realisation that everyone there had an interest and a need to talk about death and dying, and these needs are common to all people. Perhaps this is the attraction of attending a Death Cafe. While there, the things we most fear, our hopes, wishes and sadness can be brought out into the open and tended to. And then we leave, feeling somehow lighter, having had an opportunity to connect with people we may never have otherwise met.

"All the issues discussed are likely face us in one form or another, at some point in the future. But for most people there, this time was not now, not today. We returned to our lives enriched and appreciative, with a newfound determination to appreciate life while we still have it.

"Plans for next year's events are already afoot. We would like the next Marie Curie Death Cafe to be an open and public and we would like to extend the principles of Death Cafe into the community, for people who might not have been able to get to the hospice, or who were intimidated by the prospect.

"It is hoped that through developing events such as these, we might be able to do as Bernard Crettaz suggests, “Bring death out of the shadows”.