'Death Cafes' provide forum for that least comfortable of topics

By Lou Fancher

If you're like a lot of people, you don't want to talk about death. Others, meanwhile, are dying to.

Fortunately, death discussions are finding a forum. A worldwide movement, a global conversation has begun. A leading such forum is Death Cafe (deathcafe.com), with sessions scheduled in Oakland Aug. 11 and 25, and in San Francisco Aug. 24. A March session in Orinda hosted by Orinda Books owner Maria Roden drew a capacity crowd of 75 people.

Death Cafes are owned by no one person, although they originated from one man. Sociologist Bernard Crettaz began hosting pop-up "cafe mortals" in Switzerland in 2004. The gatherings swiftly took on their "social movement" momentum in 2011, when East Londoner Jon Underwood hosted dozens of cafes in the United Kingdom. Bringing the cafes across the Atlantic, Lizzy Miles held the first U.S. Death Cafe in Columbus, Ohio. Since 2011, more than 1,700 Death Cafes have taken place.

Loosely bound by facilitator guidelines like leading with a tender, ephemeral touch and encouraging a positive, inclusive, non-hierarchical structure, these events are strictly not-for-profit, without agenda other than talking about death. They aren't counseling sessions, but are designed to increase awareness.

"We don't know what's going to happen," Roden said, "but it's such a topical thing, I had to support it."

Dr. Sherellen Gerhart, a geriatric, palliative and hospice care specialist who attended the Orinda event, said that approaching Roden was her "first ask" after having witnessed a handful of Death Cafes, and having attended numerous patient deaths.

"I trust in the process I've watched and observed at Death Cafes," she said. "I want to provide safe opportunities to process grief and loss."

Not being able to do talk about death prevents positive experiences, Gerhardt suggested. By talking, she said that people might find common ground in how to treat the ill and dying.

Judging by the immediate buzz of conversations once the large Orinda group had been divided into clusters of five people, pent-up energy was being unleashed.

Like the division between people who won't talk about death and those who will, participants split into anonymous/full disclosure camps. The Death Cafe movement actually welcomes media coverage -- the cafes aim to promote talking about death -- but the cafes are also dedicated to providing a safe environment where individuals set the boundaries.

Hildy DeFrisco takes care of her 91-year-old mother at her home. Broaching the subject of dying is nearly impossible.

"She doesn't want to talk about death," DeFrisco said. "I'm trying to steel myself so I can go through it. How can I prepare? How can I have the right language?"

A woman in the Orinda group who lost both her parents when she was in her 30s, asked a more direct question: "What kind of death do you want?" Feeling like she was "on the frontline" in her grief, she sometimes wondered if she was going crazy.

Together, the mix of men and women share experiences -- inept feeding tube insertions, lengthy hospital discharges, family members unable to swallow pain-relief medications. None of them are talking about death, but eventually, they do.

"My fear is dying in pain. That's a biggie," said Larry, another attendee.

In another group, people say they have embraced loved ones at the moment of death. They use words like "lucky," "special," and "filled with grace."

Shifting the conversation back to the period before dying, everyone agreed that hospitals are the worst setting for making critical care decisions.

Mentioning "The Conversation Project," a grassroots effort to help people talk about end-of-life care, Roy Powell said everyone in a family member's hospital room should know what is supposed to happen.

Ksenija Olmer asked her group if they'd want to die "in a snap," or have time to say goodbye. Half of the group chose "snap," the other half, a slower time frame and dying while sleeping.

"I want to live so I have no need to tell people goodbye or that I love them--I've done that already," Olmer said.

Susan Lucier is Catholic and said death has long been "a hush, hush, sad thing." She came to reaffirm the need for a good death and said a living wake she attended that celebrated an aging relative's life -- well before death occurred -- is one way to accept death while honoring life.