This week is Dying Matters Awareness Week, a week where people are encouraged to have honest conversations about death, dying and their plans for the end of life. Every year in May organisations and individuals up and down the country host talks, screenings, open days and exhibitions, but this year the Covid-19 pandemic has pushed events online. We speak to two death café organisers to find out how they’ve translated these informal get togethers over cake into virtual events.
Nicole Stanfield Caile, a student nurse, has been running a bi-monthly death café in Taunton for several years, regularly drawing in between 20 and 30 people. “I started it after caring for my estranged father who was dying. He hadn't made any end of life plans, and it was very difficult to organise that and help him at the same time. There wasn't a death café in my area so I thought it would be something I could do to help people talk about death and hopefully prevent others from being in the same situation I was in.”
Death cafes were founded by the late Jon Underwood and his mother, psychotherapist Sue Barsky Reid, inspired by the work of sociologist Bernard Crettaz. Underwood thought it was important that a space existed for people to have conversations about death and dying that they might not be able to have elsewhere. Since the first death cafes were held at his home in east London in 2011, the concept has expanded to over 50 countries around the world.
The sharing of cake is a key part of the death cafes; it helps create a friendly atmosphere where people feel at ease. This posed a big challenge when planning the online event. “You miss the face to face contact and the cake” Nicole explains, “because when we're having a cafe it's not all death talk, sometimes you have a general chat to find out how people are, how their job interview went, that kind of thing. We definitely missed that, but with a few rules that we set in the beginning, it ended up being a really meaningful and really great conversation.”
There is never a set agenda for discussion at the death cafes. Nicole explains that people usually want to talk about the practical aspects of dying, such as making a will, and power of attorney. At the events she’s livestreamed so far the topics were similar, but the backdrop of the pandemic was evident. “Everything we talked about had the shadow of Covid-19 over it” she says. “We talked about wills and planning, but there was always the issue of how the lockdown or isolation affects this. We talked about funeral restrictions and how people are going to be able to grieve.”
One of the main themes that emerged was flexibility. “We talked about planning a lot, and how as well as being flexible in life we're having to be flexible in death now as well. When we make plans we need to have a sort of caveat, for instance that you might not be able to fulfil something for a family member, or give them the funeral they want, and that's okay, don't feel guilty if there's a reason like Covid-19 that means you can't. It’s almost like absolving people.”
Jane Morgan and Ruth Valentine, an independent funeral celebrant, have been running a death café in Tottenham, north London, since 2017. Their attendees usually talk about past bereavements, anticipating their parents' deaths and how to talk to family about their own death. At their first streamed event the conversation revolved entirely around Covid-19. “People were saying they were having conversations about their own and other people's deaths that were harder before” Ruth says. “I think it's become easier to admit fear maybe, and death isn't so remote from many people's lives. People are also more aware of the need to sort out everything in advance.”
Ruth and Jane used Zoom to stream their death café. To promote it they emailed their mailing list in advance, setting a limit of 10 people. There were no major problems apart from someone’s camera and Ruth’s microphone not working, so she switched to using her phone instead. The other main difference was the way they ran the session. “We both felt we weren't facilitating in quite the way we would normally, we intervened a bit more. That probably comes with practice. But there were no challenges in terms of content, or the participants' behaviour.”
Nicole has tried both Zoom and Facebook Live, and found that Zoom worked better because people can see each other, plus the hand raising system ensures everyone gets a chance to be heard.
There are other advantages to the virtual cafes; one is making it easier for people to attend, regardless of distance or circumstances - Nicole’s event had attendees from all over the UK, as well as someone from France. “For a lot of people this is a more convenient and better solution. I'd never considered virtual death cafes as a viable option, but we’re talking about alternating physical with virtual ones every other month in the future. They’re just more accessible for some people.” Ruth and Jane are also thinking of running more virtual events because of the difficulties finding local venues.
“The main goal is to get people talking” Nicole says. At a time when people are considering their own mortality, and that of their loved ones like never before, this seems especially important. “We see the death tolls every day, and people can see it’s possible they’re going to die. And of course we're going to die, everyone is, but for most people it’s been a distant concept until now.”
“The thing that struck me the most was that when people were talking about making plans they were mentioning things like restrictions on funerals, basically planning for a death that might happen soon. Getting people to plan and talk about death is like pulling teeth sometimes, and now people are planning as if they might die during this outbreak. That's why we're seeing a big interest in death cafes, because people are realising they’ve never talked about this before, and one day it might be too late.”
