Death is not usually a topic you discuss over tea and cupcakes in a cafe, but that was what 25 people gathered to do in Hackney on Tuesday afternoon.
In between nibbles, they talked candidly about the anguish of seeing a loved one suffer and deteriorate physically and mentally, the difficulty of broaching the subject with family members and the desire for an easy death.
Some in the group are hospice or medical workers, others are people who have just lost a loved one or wish to understand how to support someone who is dying.
This “death cafe” is part of a Dying Matters Awareness Week, which started on Monday and runs till next Monday, May 24.
Now into its sixth year, the week-long national campaign features a series of events including art exhibitions, talks and funeral home open houses. There are also daily Twitter chats with experts providing advice.
Spearheaded by the Dying Matters Coalition, set up in 2009 by the National Council for Palliative Care, it aims to get people talking about dying, death and bereavement, as well as making plans for their end-of-life.
The Awareness Week coincides with the release of a damning report on Wednesday by the Parliamentary and Health Service Ombudsman, which showed that many terminally ill NHS patients were dying without dignity.
The survey found that many were suffering unnecessarily without proper pain relief, or denied their wish to die at home.
The National Council for Palliative Care, too, released survey findings on Monday that showed that majority of Londoners still view talking about death and making end-of-life plans as taboo.
Only 29 per cent of adults in London have written a will and a quarter have talked to someone about their funeral wishes.
Just 7 per cent have written down their wishes or preferences about their care in future, should they be unable to make decisions for themselves.
Charlotte Griffin, organiser of the death cafe at St Joseph’s Hospice in Hackney’s Mare Street, said the cafe helps people discuss difficult issues which they may not be comfortable bringing up with people closest to them, in a comfortable and safe environment.
“People walk away feeling part of a community, confident in the knowledge that the discussions they want to have are ‘normal’,” she said.
The death cafe movement has taken off since Hackney resident and former council worker Jon Underwood developed and launched the model in 2011 in Hackney. Underwood’s death cafe concept is based on a Swiss model, Cafe Mortel, created by Swiss sociologist Bernard Crettaz.
Nearly 2,000 such cafe sessions have been run globally since. St Joseph’s Hospice has already run two cafe sessions this year. Griffin said the feedback from participants is for more of such opportunities to talk about death and dying, and the hospice will continue to host them.
A participant at Tuesday’s death cafe, who asked to remain anonymous, said the concept was “brilliant”, and that she “feels quite a bit more liberated now”.
Joe Levenson, spokesman for the National Council for Palliative Care, said while most people think Britons have become more comfortable talking about dying, “there’s still a long way to go as only a minority of us are having the conversations that matter, or taking practical steps such as writing a will”.
The campaign has gone from strength to strength, with this year’s number of events topping last year’s 500.
Levenson says the council hopes that more people will take steps to plan ahead to spare their families from having to make tough decisions.
“We also want to see doctors and other healthcare professionals becoming better at talking sensitively and openly about end-of-life issues to ensure people get the right care and support, where and when they want and need it,” he said.
Two Dying Matters Awareness Week events in East London today:
Big Fish on the Big Screen
Free screening of the Tim Burton film, Big Fish, starring Ewan McGregor as a son trying to learn more about his dying father by revisiting the stories he told about his life.
May 21, 6.30pm–8.30pm
The Lecture Theatre
St Joseph’s Hospice
London E8 4SA
To book, email email@example.com
Death Café @ Appian Court Age UK East London
A death café organised by Compassionate Funeral that allows participants to lead discussions freely on death and dying.
May 21, 1pm-3pm
87 Parnell Road
Bow, London E3 2RS
To book spot, email firstname.lastname@example.org