Culture

Inside the Death Cafe: A Gathering Place For People to Talk About Dying

People are gathering to discuss death and dying over tea and cake.

A woman at the Death Cafe, where we’ve gathered to discuss end-of-life issues, gets up to use the restroom. The group continues to  discuss matters related to shuffling off this mortal coil, like planning ahead for your family’s benefit, do-not-resuscitate (DNR) orders and living meaningfully while you can. Suddenly someone realizes the woman has been gone a long time.

Uh oh. Has someone come to the Death Cafe…and died?

When the muffled “I’m okay!” comes from behind the bathroom door, a feeling of relief moves through the room. This kind of irony is fun to read about, but it’s not something you want to be present for.

This is a slice of life from a Death Cafe, a type of salon where people gather to discuss death and dying over tea and cake.

The concept was developed by British website designer Jon Underwood and psychotherapist Sue Barksy Reid. They based their model on the cafe mortels developed by Swiss sociologist Bernard Crettaz in 2004. The first Death Cafe took place in Hackney, East London in 2011 and since then over 1,500 have blossomed all over the world.

“Our aim is to increase awareness of death to help people make the most of their (finite) lives,” the Death Cafe website says. There is meant to be no business, political or religious/spiritual agenda. There is meant to be cake. What’s not to like?

For many people the whole subject is an unlikeable one, and one many people put off. Shannon Pettypiece writes in Bloomberg Business that 70% of American adults don’t have a living will and about 30% of seniors don’t have a will of any kind. Louisa Peacock writes in the Telegraph that more than half of Brits don’t know their partner’s end-of-life wishes.

Peacock cites author Satish Modi, who says an average lifespan in Victorian England was about 48: they didn’t distance themselves from death because it was more present. Since then, two world wars made people death-weary and unwilling to talk about it.

Our modern ability to distance ourselves from death makes that unwillingness easier. Physician and former hospice worker Bruce Wilson’s compelling piece in the Milwaukee Journal-Sentinel describes how people once died and were mourned at home. Now, “we have become so good at treating illnesses that we somehow have come to view death as an option,” and one that involves hospitals more than homes.

Death may have become less personal, but it’s become more political, as Brittany Maynard recently showed. Maynard opted for death with dignity at the age of 29 under Oregon state law after enduring treatments for terminal brain cancer and not wanting the “nightmare scenario” her family would inevitably have to face. On CNN, in print and on video, Maynard spoke eloquently and emotionally about her decision and about advocating for people who are not in a state that has death-with-dignity laws (she was able to move to Oregon from California). Five states—Oregon, New Mexico, Vermont, Washington and Montana—currently have such laws and New York has recently introduced a similar bill.

Clearly death has an audience. We’re about to become part of it.

***

Driving toward the beaches of Sarasota, Florida, it feels like life couldn’t get much prettier. Yet 20 people have chosen to spend this sunny Saturday afternoon at the Death Cafe. Venues for these salons vary; some are in real cafes, some in cemeteries or museums. This one is at Radiance of Sarasota—picture a comfortable yoga studio and you’re there. There are cupcakes, cookies and other cocoa-laden goodies. The theme this month is Death by Chocolate.

Chairs are arranged in a circle. The facilitators of the group, Lori Marshall and Mark Sanders, introduce themselves. Life coaches and spiritual educators, they have the easy presence of people who don’t want anything from you. They feel safe, a good quality for people managing potentially dicey topics. And there are some of those, including an encounter at  past group with a man Marshall calls “astounding.”

He told her, “I’m wanting to kill myself and I want the secret recipe to make it as easy as possible.”

“We can’t talk about this here,” Marshall told him “We can talk about suicide but this is not the place to come for the magic recipe!” 

An older man came in saying he wanted to know how to die easily; he had lost his wife and was blind. He’s come back three times.

“He’s getting something out of it. He’s not getting the recipe but he’s getting something,” Marshall says.

Among us is a funeral director, a woman with a roommate who is dying, and a number of hospice workers. The age skews middle-aged to older, except for three young college sociology students, who want to start their own Death Cafe on campus and are here to see how it’s done. 

The 90-minute session flies by, moving fluidly between practical matters, like having a death advocate to make sure your wishes are enforced, to more emotional matters like our terrible fear of losing our loved ones. People’s experiences and insights are varied and poignant, visceral and yet delicate. One woman says she thinks there should be funeral rehearsals, like wedding rehearsals, so you can hear all the great things your friends have to say about you while you’re still here. One man, who reminds me of an older Robert DeNiro, says he doesn’t believe in an afterlife and will be “happily surprised” if there is one. This intimacy with strangers is kind of awesome.

Daphne Whitman, a Death Cafe first-timer, is a new advocate for death-with-dignity and wants to be “part of the tipping point,” of that issue for this country. Her 25-year-old daughter had a malformation of blood vessels in the brain and died of a brain hemorrhage; Whitman's husband died while they were at a dinner dance together. But both of these losses happened quickly. It was her mother-in-law’s long predicament that moved her to activism.

“She committed suicide at 83, having had Parkinson’s for 12 years,” Whitman tells me on the phone after the event. She was a “private, dignified, English Bermudian lady,” and facing the inability to care for herself and a debilitating illness, she took her life after two previous tries.

“Our institutions are against something we give our animals,” Whitman says—the ability to go when the end is inevitable and quality of life will be clearly gone.

At one point there is a little tension in the group. One woman is proud of having gotten all of her affairs in order so that in the end her kids won’t have any guesswork (or bill), which funeral director Debra Fewell says families are always grateful for. But the woman also says she doesn’t want any kind of memorial event. Some people in the group feel that doesn’t give the living a chance to grieve or celebrate.

“It’s just out of not wanting to be a bother,” Fewell explains when I speak to her later. People don’t realize that honoring a person’s life can be as formal as a church funeral or as simple as going to their favorite hangout and toasting their memory, she says. I tell her my own mother did not want a funeral, but I did go with a friend to drink beer—Mom’s favorite food—in her memory.

“A service nowadays is as unique as a person’s life,” Fewell says. “There is no norm.”

Fewell says that when people find out what she does for a living they always have lots of questions about funerals, legal matters, even spiritual and religious matters. 

“Nobody ever says, 'I know everything there is to know about death,'" she says. And Death Cafes certainly seem like good ways to help clear up misinformation as well as share feelings and experiences.

Lori Marshall shares with the group that she’s been nursing her greyhound through a serious illness and she’s not sure how long her dog has left. Later in the week I ask her if running a Death Cafe helps at a time like this.

“You have to remember that everything dies, everything leaves the physical and everything, in my world, carries on,” she says. After mulling over a few other things she says, “I think it does help. It still sucks.”

And there it is. Nothing can stop the actual loss, but having a community in which to air fears, humor and talk of the taboo can help. Death, after all, is one thing we all have in common.

As the group disperses, the atmosphere is upbeat, relaxed and thoughtful. I walked away considering some things I should do (make a will, travel to Asia) and feeling more appreciative of the time I have left.It’s still a beautiful day, so we head for the beach. I snag a cupcake for the road. Somehow it tastes a little sweeter.

Liz Langley is a freelance writer based in Orlando, Florida. #OrlandoUnited. OrlandoStrong.

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