Let’s talk about death

Death is a topic that many of us cringe away from. Some people find it awkward, some upsetting, and others just think it’s a bit of a downer. However, with death in vast numbers dominating the headlines, it’s time for us to be brave. To find out why so many people struggle to talk about the ‘d’ word – and why it’s so vital that we do – I took a look at the wave of new institutions cropping up to deal with the issue: Death Cafes.

Death Cafes: from England to the rest of the world

In 2011, a web developer named Jon Underwood and his mother, psychotherapist Susan Barsky Reid, held the first Death Cafe in their living room in Hackney. Noticing an increasing sense of societal discomfort in confronting the topic of death, Jon said, ‘We have lost control of one of the most significant events we ever have to face,’ and wanted the cafe to be an opportunity for strangers to come together and take back control. There was also tea and cake.

Jon believed that tea and cake were important for building a supportive environment for people to open up (a theory I can heartily get behind) and wrote it into the core requirements of a Death Cafe.

Now, there are more than 10,000 Death Cafes across 69 countries – that’s a lot of people drinking tea, eating cake and talking about death.

The Death Cafe I visited took place at the Almeida Theatre in Islington, on a cold, drizzly, pre-lockdown afternoon in January*. Despite the weather (and the topic), the room was warm and bright, and the atmosphere cosy and convivial. The windows soon steamed up with the chatter of around 30 people, sat on tables of six and sharing plates of chocolate brownies.

One of the foundations of Death Cafes is that they’re safe, confidential spaces, so I won’t divulge the specifics of what was discussed on our table, but I did grab Debbie Young, who runs the cafe, for an on-the-record chat.

Jade: So how did you end up running the cafe?

Debbie: Back in 2011, my business partner and I worked in the NHS, commissioning and running projects focusing on end of life care. We got involved in the Dying Matters Campaign and Dying Matters Week (11–17 May, a campaign which aims to ‘place the importance of talking about dying, death and bereavement firmly on the national agenda’), and realised that we were really passionate about the cause. We decided to leave the NHS so we could set up a business raising awareness around death and dying, and end of life planning. We were doing a lot of work training staff anyway, in doctors’ surgeries and care homes, around how to have conversations with patients and families about death. But it felt like unless the public were also able to have those conversations, it’s a bit of a one-way street. We wanted to reduce the stigma, the taboo.

The result was Gentle Dusk, which offers workshops to the workforce and the public on talking about death and end of life plans, and Future Matters, a volunteer-led community project where people can get peer-to-peer support to plan for end of life. Luckily, we were able to get funding quite quickly because we were already known and trusted by the people in the area because of our NHS work.

It was around then that we became aware of Death Cafes, and started attending them. We thought they were great but didn’t think they were necessarily part of what we needed to do. Then, one Dying Matters Week, we thought ‘Why not just run one?’ because we’re always looking for activities as part of the programme. That was our first one, three and a half years ago, and people loved it! They were immediately asking ‘When’s the next one?’ and some people have come to all of them since. We started doing them quarterly at first, but the waiting list started getting long, so we increased them to every couple of months. It’s amazing how many people – from all walks of life – want to attend.

Jade: It’s a really diverse group here today. Before I came, I thought most people here would have recently suffered a bereavement or be living with a terminal illness – definitely an older crowd. But everyone’s different ages, and everyone I’ve spoken to has had different reasons for being here…

Debbie: Which changes the topics that people talk about. The people at your table were quite young, so you discussed social media and digital legacies – what’s left behind after we die, and how we can control that – which didn’t come up on the other tables.

Jade: It was also a surprisingly uplifting experience. I didn’t expect to come away feeling so positive.

Debbie: When you start running them, you think ‘How is this going to work? How can you sit with strangers and talk about death – isn’t that going to be really sad?’ But as you’ve seen, that isn’t the case at all. Feeling uplifted is always part of the feedback – afterwards, people feel positive and empowered to talk to others about death.

You hear difficult stories, too, about what happens when people haven’t been able to talk about death with their loved ones, when what’s left behind is messy and painful, and people aren’t sure they’re doing what their loved ones would’ve wanted them to do. It makes you want to go home and check in with your family and friends – what do they want to happen to them at the end of their lives?

Jade: Someone on my table was saying that after experiencing multiple tragic deaths and visiting the Death Cafe multiple times, they’ve now put plans in place with both their parents so everything’s clear in the event of a terminal illness or sudden death: around care, power of attorney, funerals, legacies, all of it. It makes me think – hmmm, maybe I should organise some of that! It feels like these are essential conversations to be had.

Debbie: Of course! There are also other really important reasons to talk about death. We’ve been approached by quite a few medical students and junior doctors asking if it’d be appropriate for them to attend. They’ve had little or no training in how to talk about death, despite it being a big part of their professional lives: they’ve got to have those conversations, but they don’t feel prepared or equipped to do it well. They come here to listen to people’s stories and work out how to approach those conversations in a way that’s helpful for patients and their relatives.

Even in care homes, staff aren’t always trained to discuss these things – and they sometimes just don’t want to. They’re scared of bringing it up. So you get into situations where people are dying and it’s a crisis situation because it hasn’t been talked about. No-one’s asked them, ‘When this happens, do you want to be taken to hospital? Who do you want with you?’ You end up with people being taken to hospital and dying there, with no one around them, because they never got the chance to talk about their wishes. That’s why we made free downloadable plans available on the Gentle Dusk website, so you can make end of life plans for yourself or with loved ones.

Jade: It’s funny because we all experience death, and we all know what makes us feel better, but so few of us feel able to offer it. I experienced a death not long ago, and I found even people who seem really open in all other aspects of life didn’t really want to mention it or talk about it. But I wanted to talk about that person – it was comforting to remember them.

Debbie: That’s why it’s important that anyone who fancies setting up a Death Cafe should give it a go. The Death Cafe website is brilliant because it gives you really clear guidelines on exactly how to do it – you don’t need any qualifications, and you can start off small.

Jade: Has it all helped you feel more comfortable with death?

Debbie: Well, I understand people’s fear – occasionally, late at night, I’ll think about death and a panic will come over me. ‘I can’t die! I’m not ready!’ And I’ll try to think, ‘Why? I’m happy, I’m living a good life’. But I know it’s because I don’t want to end up in a care home, in a plastic chair, full of regrets. It makes you think about what you want to achieve in life, and what decisions and plans you can make now, to make sure the end of your life is as you want it.

I’d like to be in a care home by the sea – I like outdoor swimming, so maybe there’s a little swimming pool they could put me in – with wine, and always a cup of tea. It sounds more like a hotel, really. But that sounds nice. I think there I could be like, ‘I’ve had a good life. I’m tired. I’m ready.’

If you’re interested in running a Death Cafe with your group, get all the information you need at deathcafe.com/how. During the current health crisis, Death Cafes are being run digitally – so you can still give one a go.

Death in cultures around the world

Of course, death isn’t exclusive to the UK – so how do other countries handle it? Here’s a look at different cultures around the world and how they mourn, celebrate and remember when a loved one’s life comes to an end.

USA

In New Orleans, Louisiana, jazz funerals are common. Merging a large range of funeral and carnival traditions, from those of Nigeria’s Yoruba people to Mardi Gras Indians, funerals are accompanied by a marching brass band that switches from sorrowful music and hymns at the start, to joyful, raucous beats at the end. Dancing’s highly encouraged to both celebrate the life of the deceased and to express the attendees’ strong emotions.

China

In China the symbolic colour of grieving is white, not black, so giving a Chinese person white flowers is considered very unlucky. Because there’s an impression that young people in China no longer know how to express emotion properly, there’s also a trend for hiring people to mourn at funerals. They learn facts about the deceased so they can authentically empathise and chat with other mourners, and make a big show of expressing their grief – wailing and sobbing, and helping other family members to feel comfortable doing the same.

Indonesia

In Tana Toraja in eastern Indonesia, death isn’t looked on with dread like it often is in the west, but as an important, celebrated part of living. Indonesian funerals are very expensive, involving the whole village and lasting anywhere from a few days to a few weeks. Families save up for long periods of time to raise the money needed – until they have enough, which can take years, the deceased is referred to as ‘sick’ or ‘sleeping’ and is well-cared for in the family home. Their clothing is regularly changed, they’re fed food and a solution of formaldehyde and water, and they’re even taken out for trips.

Japan

In Japan, 99% of deceased people are cremated. After the cremation, the deceased’s relatives pick the person’s bones out of the ashes and place them in an urn using large chopsticks. Sometimes, two relatives will pick up the same bone, which is the only time this is considered acceptable – it’s a serious faux pas for two people to pick something up with their chopsticks together at any other time, as it reminds people of death. The bones of the feet are picked up first, and the bones of the head are picked up last. The average funeral in Japan costs more than 3 million yen (around £21,000). Because Japanese people are typically reserved when it comes to the topic of money, and particularly embarrassed to discuss it at a time of grief, most people only find out the cost after the funeral has happened.

South Korea

A law was passed in 2000 that said anyone being buried in South Korea had to be removed after 60 years. Because of this, cremation surged in popularity, going from four out of 10 people being cremated to seven out of 10 in just a decade. What’s also increased in popularity is the practice of turning people’s ashes into beautiful ‘death beads’, in turquoise, pink or black. These are displayed in glass vases around the home, and considered less creepy than traditional urns.

The Philippines

There are lots of unique funeral practices across the Philippines. When someone dies, the Benguet of north-western Philippines construct a special chair out of bamboo and place it by the main entrance of the house. They then blindfold the dead person – so they don’t have to witness the suffering in the world – and place them on the chair for eight days, before burying them. Their neighbours in Tinguian do a similar thing but place a lit cigarette in the lips of the deceased. The Caviteño, who live near Manila, choose a tree as they near the end of their life. Once they’ve died, family and friends hollow out the tree trunk and bury them inside to return them to nature. Meanwhile, the Apayo, who live in the north, bury their dead under the kitchen to show everlasting love and affection.

Mongolia and Tibet

Sky burials are funeral practices where a corpse is chopped up and placed on a mountaintop to decompose, so the elements – and animals, such as vultures – can dispose of it naturally. This is popular with Vajrayana Buddhists in Mongolia and Tibet, as they believe the soul moves on once a person is dead, leaving the body an empty vessel. Sky burials have been done for over 11,000 years and, according to a recent report, about 80% of Tibetans still choose it.

Madagascar

There’s a famous ritual among the Malagasy people of Madagascar called ‘famadihana’, or ‘the turning of the bones’. Every five to seven years, families take the bodies of loved ones out of the family crypt and wrap them in fresh silk shrouds sprayed with wine or perfume,
with the name of the deceased written on so they can always be remembered. A band then plays and family members dance with the bodies above their heads, drinking and chatting with them, before returning the bodies to the crypt at sunset. It’s a chance to bring extended families together, to pass news onto the deceased and ask for their blessings, and to remember and tell stories of the dead.

Ghana

The Ga-Adangbe people of Ghana are famous for their spectacular coffins. These elaborate structures often represent the interests, profession or status of the departed, and are meant to see them off into the next life in style. A coffin could take the form of an aeroplane or a Porsche (to show a well-travelled or wealthy person), a giant Bible
(in the case of a highly religious person), a fish (for a fisherman), or something they just enjoyed in life, such as a Coca-Cola bottle or even a giant cigarette packet. In Ghana, coffin makers are regarded as important artists and their work costs around a year’s salary. The funerals themselves are grand affairs that often cost more than weddings – they’re advertised on huge billboards so that nobody in the community misses out.

* Currently, Death Cafes are being run digitally over apps like Skype or Zoom.