This story first appeared in How We Care, a weekly newsletter by Spotlight PA featuring original reporting and perspectives on how we care for one another at all stages of life. Sign up for free here.
By Sarah Boden | Spotlight PA
Death is a subject often kept in the shadows of American life. But it is a universal experience, and a common outcome in caregiving. Sometimes it is expected, as when someone is terminally ill or older. Other times, it’s sudden, such as when someone has a fatal stroke or aneurysm.
This makes it important for caretakers and the people they support to examine and discuss death.
In so-called death cafes, people are gathering — online or in person — to unpack death and its aftermath, with conversations ranging from estate planning to grief.
Death cafes, inspired by Swiss sociologist and widower Bernard Crettaz, are held across the world, according to a British organization that embraces the meetups. More than 19,000 of these meetings have taken place in 92 countries since 2011, the group claims on its website.
Philadelphia Rabbi David Levin has hosted an online death cafe for more than five years, and describes it as a space where people can express themselves and ask questions about death without fear of being judged or ostracized. He told Spotlight PA that people should embrace death as a normal part of life. In this interview, which has been condensed for clarity and length, Levin explains what attendees discuss at his bimonthly assembly, and why they come.
Spotlight PA: What’s the difference between a death cafe and group therapy or a support group?
David Levin: A death cafe does not represent itself as a support group, and we’re not a bereavement group.
That being said, there are people who come regularly who have been touched by death: from people who have lost close family members, to people who are losing family members, to people who are actually in the active death experience themselves. And just people who are genuinely curious about death, and trying to get a grasp on this really fascinating thing that we all share as our common endpoint.
A ground rule for our group is there’s no proselytizing. So whatever your faith tradition is, you can use it to inform what it is you’re going to say, but you can’t use it as an opportunity to sell your particular version of your religion’s understanding of death. So it’s really all about coming together and having interesting conversations about the topic.
Even though proselytizing isn’t allowed, how often does faith come into play during these conversations?
Faith is a lens that a lot of people use to look at death and try and understand it, as well as life in general. But there are several people that are regulars in my group that are professed atheists. There are a couple of professed agnostics. And the fact that the human experience includes death, and sort of transcends religious understandings of death.
I would submit to you that the various religions are trying to help people understand and make meaning of this finality — or, I won’t call it finality — but of death because it’s questionable as to whether or not it is final. And that’s part of the conversation. What happens? Where do we go? What does it look like?
These are weighty questions that you guys are grappling with. What’s the vibe like at your death cafes?
Sometimes conversations are jubilant; sometimes they are sad. You run the gamut of human emotions, depending on the question that’s being asked and the concept that’s being pondered.
I have had conversations with people who are actively dying, and this is, for them, an opportunity to engage in the process. And it becomes a really interesting space where people are willing to be vulnerable. Running this death cafe has created a community, and the opportunity for people to meet other people who are having similar questions, so that death is not the solitary scary thing that you have to face by yourself.
There is a fear of death and an emphasis on youth in our culture. The idea that we get old and that the body finally stops working is kind of scary. And it’s like we’re not supposed to talk about it.
There was a time when most people died in their homes, surrounded by family, and we have a substantial number of people who no longer have that — people go to hospitals, people go to some sort of interim facility. It makes for a more lonely kind of an experience.
Our culture has cultivated a lot of people who don’t want to talk about it. You want to shut down a conversation at the family dinner table.
It occurs to me that caregivers might be served by attending this death cafe. Often people might be caregiving for someone dealing with a fatal diagnosis, and they could benefit from feeling more comfortable with death.
Oh, I agree. I have people who are chaplains coming into the space. I have death doulas regularly coming, as well as nurses and med students — we’ve got several medical schools in the Philadelphia area. It’s very illuminating because the emotional and spiritual space that dwells within us needs to be comforted, just like the analytical and the rational stuff. If you focus strictly on the analytical and the rational, and deprive yourself of those other things, then you’re not looking at the whole person. And we give people a place in which that can happen.
Sometimes the topics can be really esoteric. But when you’re confronting something traumatic, one of the very first feelings that you have is this profound aloneness. And what we do, when we’re at our best, is offer an empathetic presence which says, “No, you’re not alone. I’m going to be here with you while you’re experiencing this.”
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