Not to Be Morbid, But Let’s Talk About Death
The once taboo talk of end-of-life discussion finds its way into salons and doctors’ offices as palliative health care becomes the new normal.
Death Cafe discussions are as varied as their membership. They are not grief counseling sessions.
Photo by Pat Mazzera
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On a Tuesday evening, 15 mostly-over-40 strangers sit on comfortable, padded chairs in a meeting room at the Chapel of the Chimes, the historic Piedmont Avenue crematory and columbarium. The visitors’ seats are arranged in a circle; coffee, tea, and cookies are set out nearby as refreshments. These people, primarily women, have come together not for a celebration of life but to talk about death. This is Oakland’s Death Cafe.
William Palmer founded Oakland’s only Death Cafe in 2012 and often facilitates the evening discussions, as he does this night. “It’s not grief counseling,” said Palmer, whose warm voice and cowboy boots lend a relaxed vibe to the setting. “It’s designed to be a friendly, welcoming environment for you to talk freely about death or any topic that relates to death.”
Without much prompting, the attendees begin to share their stories and concerns. The mood is pensive and reflective, and those who speak are met with nods and reassuring smiles from the rest of the group. All participants registered online for their spot, and it is common for the curious to encounter a waiting list as the increasingly popular free salons fill up quickly.
On this night, a middle-aged woman talked about how her mother’s passing after a protracted illness wasn’t what she had hoped it would be. She said hospice wasn’t an option until it was too late; her mother was unable to participate in her health-care decisions; and she and her siblings disagreed about the care of their mother. An elderly man acknowledged that he is getting physically weaker and beginning to forget things. He said he feels like a burden on his family and wonders how he and they will manage long term. When a 70-year-old woman described feeling overwhelmed by the practical side of death, the documents to be completed and the details of getting her estate in order, several offered suggestions regarding resources that will help. Another septuagenarian said she has been learning how to have a good death for more than a year and believes she is as prepared as she needs to be. “After all, in the end I’ll be dead; someone else will have to deal with things then,” she said, and the group laughed.
Death Cafe was launched in England four years ago and spread quickly across Europe, North America, and Australia. More of a group-directed discussion, a Death Cafe does not advocate any course of action, outcome, or product—religious, philosophical, spiritual, or otherwise.
“We listen, talk, and support each other,” said Palmer, an organizational development consultant and a coach. His very positive experience with hospice, when his mother died 10 years ago, led him to become a hospice volunteer and subsequently to the Death Cafe movement. “In the past, talking about death has been taboo. It’s a difficult conversation to have. But that’s changing. There’s more openness to death talk today.”
After three years, Palmer has hosted more than 30 Death Cafes with about 500 attendees. (Another Death Cafe started up in Alameda about a year and half ago.) The topics discussed range from wills and advance directives—the legal documents that spell out your decisions about end-of-life care—to beliefs and fears about death. “In a global sense, people are looking for practical information and a way to support themselves in the face of death,” Palmer said. “The question they often ask is, ‘How do I get the treatment and care that I want to live my life at the end in a way that I can control?’ When fear comes up, it typically comes out as, ‘I’m not afraid of death; I’m afraid of suffering.’”
When it comes to health care, the issues surrounding death and dying are complicated and personal. The idea of paying doctors for talking about end-of-life care with their patients was greatly politicized in 2009 and nearly derailed the approval of the Affordable Health Care Act when former Alaska Gov. Sarah Palin claimed that these conversations would create “death panels” and enable bureaucrats to subjectively ration health care. While the myth of death panels has been repeatedly refuted, today Medicare provides only limited one-time reimbursement for end-of-life counseling. The process, however, requires many conversations over multiple visits, explained Louise Aronson, M.D., a geriatrician and palliative care expert with the University of California, San Francisco School of Medicine. Because these important conversations are not reimbursed, doctors are left to conduct these discussions on their own time or not at all, she added. “If we want people to make good, informed choices, they need to have these discussions, and they need the education.”
Recently, Palin again raised the specter of death panels in the wake of the renewed proposal for Medicare to routinely pay doctors and other health-care providers for these conversations; a decision on reimbursement for advance care planning is expected later this fall.
In California, the state legislature has been engaged in debate over the rights of terminally ill adult patients to obtain prescription medication to end their lives. In the past three months, the End of Life Option Act was introduced, withdrawn, reintroduced, and ultimately approved. However, Gov. Brown’s stance on the act has been unclear, and whether he would sign or veto the legislation was unknown at press time. “It’s an important issue to be discussed, but we’re expending a lot of energy on a situation that rarely happens,” Aronson said. “Oregon’s experience has shown us that. It’s a small part of a much larger, more complex issue. I would like to spend our time and resources on enabling us to live and age well.” Welcome to palliative care.