By Jeremy Raff
In a dimly lit room decorated with several Buddhas and a large red-and-white Zen illustration, twenty-nine people sat in a circle. Some were eating chocolate bundt cake. It was an unusual setting to be discussing the topic at hand: death and dying. These death cafes have sprung up around the world to address the taboo subject head-on. Organizers hope that increased awareness of death will help people make the most of their lives.
Roy Remer, the group’s facilitator, hushed the room and passed around pieces of cardstock covered in Post-its. Each person wrote intimate words on them — family members’ names, roles they play (mother, mentor), significant relationships and important objects. The Post-its became a boiled-down map of what each person holds dearest. Then, Remer walked the circle, visiting each person with inevitable gravity. He then ripped away Post-its from each one.
Some reflexively clutched their children’s names. But most averted their eyes, looking stunned. It wasn’t easy for Remer either. “It felt violent,” he said. The exercise simulated loss and started the conversation about death and dying.
“It made me realize I haven’t grieved for my grandmother,” said Samuel Domingo. When her grandmother died, “I ignored it,” she said. Domingo described the weight of unaddressed grief. Some in the circle nodded with understanding. He hopes to lift some of that burden by addressing his fears. “I’m still learning to be a person,” he said.
Domingo’s family is scattered across the Philippines, England and the U.S., which partly accounts for his emotional distance from his grandmother’s death. “If we really embraced our mortality, we wouldn’t take our lives, our relationships, for granted.”
Delfina Piretti, an art therapist, is also opening herself to grief. Her mother died last March, then her 3-year-old niece was diagnosed with leukemia in August (the prognosis is good). The 61-year-old says she’s learning how to be an elder in her family now. She said the Death Cafe helped her be “creatively alive” to that transition instead of “just guessing through it.”
While lively, intellectual European salons are the model, the Death Cafe at the six-bed Zen Hospice Project’s Guest House in San Francisco was more solemn. Family members of hospice patients filed past the group and up the stairs for their visits, but did not participate. Death Cafés are not grief counseling.
Still, a Death Cafe is a good fit for the Zen Hospice Project — its mission is to make end-of-life care more patient-centered. UC San Francisco reserves half the beds for patients who would otherwise die in an acute-care setting.
End-of-life care is “the most important and costly conversation Americans are not having,” said Michael Hebb in a TedMed talk announcing an effort similar to the Death Cafés. Seventy-five percent of Americans want to die at home, but only 25 percent do. Most Californians (67 percent) want low-intensity care at end-of-life — a more natural death — but 42 percent receive aggressive care, seeing 10+ doctors in the last six months of life.
Talking about Death as Therapy
Talking about death can be therapeutic for dying people. Shelley Adler, the UCSF professor who organized the Death Cafe, saw this first-hand doing research with cancer patients from underserved communities. “I worry when we don’t ask people if they want to participate,” said Adler, “when we act like they’re already dead.”
Some of her research participants did not live long enough to finish a twelve-week study. “You better have a really good reason to talk to someone when they don’t have much time left,” says Adler. So to give something back, she began using her interview transcripts to draft ethical wills. The documents detail patients’ core values, accomplishments and regrets. They are a legacy for family and friends in lieu of money or property.
“People asked for (multiple) copies,” Adler says.
Despite patients’ rapidly declining health, the interview process decreased their pain and fatigue — it improved their quality of life. Adler says finding meaning in suffering makes all the difference. For example, “the pain of giving birth is excruciating, but very different from the pain of being shot,” she noted.
Of course, most people don’t receive such special attention. Adler studied impoverished people in San Francisco and the East Bay. One woman had such little experience with health care that she didn’t understand her cancer diagnosis. She first learned just how serious it was from her support group’s crestfallen expression when, by way of introduction, she said her name and the words “stage four.”
Adler thinks Death Cafes can help break the taboo so more people can find meaning in mortality.
“It’s interesting that it has to be a big deal that we are having conversations on death,” Adler says. “Wouldn’t it be more intuitive that, since everybody dies, we would actually mention it a few times?”
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