by John Byrne Barry | Apr 11, 2019 | End of Life
You might think that talking about death would be somber, and yes, sometimes it was.
But there was plenty of laughter. One man introduced himself by saying, “Today is a banner day. Today I’ve lived longer than I’ve ever lived before.”
One woman told the story of a friend, who, when she learned she had inoperable cancer, said, “Oh, I don’t have to go to work anymore.”
One man said he was comfortable with the idea of dying, but he couldn’t get himself to move on the paperwork like his will and advanced directive.
We heard about a woman with a terminal disease who was determined to end her own life and planned her suicide so thoroughly, she even sought out a partner for her soon-to-be-widowed spouse.
Another participant told about a friend who was dying who asked to have his funeral before he died, and he did, with a marching band and a theater troupe performing skits, and then he died two days later.
We even heard about a new attempt to use virtual reality to help people prepare for death. You put this contraption on your head and experience entering into a different reality.
But there were also tears. One woman, whose mother had died a number of years ago, found herself unexpectedly crying. She had missed her mother’s death, and is still grieving over that.
This Death Cafe, on the last day of March, was hosted by Sukhasiddhi Foundation (pronounced suka city), a Buddhist meditation center in Fairfax, California. I had attended one in the same venue four years ago — see My First Death Cafe — and for almost everyone who came then, it was for the first time. This time, at least half had attended one before.
Death Cafe is a “social franchise,” which mean anyone can host one, use the name Death Cafe, post their event to deathcafe.com, and speak to the press as an affiliate of Death Cafe. The events are usually free or for a small donation. There’s no agenda, or intent to sell people on a product or idea. And there’s always coffee and cake. It’s a discussion group, not grief support or counseling.
The Death Cafe model was founded and developed in 2011 in London by Jon Underwood and Susan Barsky Reid, and built on the ideas of Swiss sociologist Bernard Crettaz, who opened a Café Mortel (Death Café) for an exhibition in his Geneva museum called La Mort à Vivre (Death for Life).
Pat Berube, a teacher at Sukhasiddhi, facilitated this gathering and said that since the Death Cafe started, more than 8,000 gatherings have taken place. All over the world, primarily the western countries, but in April, there are Death Cafes scheduled in Lagos, Nigeria, and Lázaro Cárdenas in Michoacán, Mexico. There’s even a Virtual Death Cafe meeting online on April 12 via Zoom.
Since I attended my first Death Cafe, the founder, Jon Underwood, died of leukemia at 44. I also learned that the man who led the Death Cafe in Fairfax four years ago had died as well. (I do remember that when he introduced himself, he said he had a terminal disease.)
What’s also happened in the past four years has been an explosion in the end-of-life movement. More organizations are promoting talking about dying. More doctors and medical practitioners are urging a change in how we approach death.
The Netflix documentary, End Game, gives viewers an intimate look at dying patients at UCSF Medical Center and the Zen Hospice Project in San Francisco.
Another documentary, Extremis, which was nominated for a 2017 Academy Award and 2 Emmys, explores end of life-decision-making in the intensive care unit
Dr. Atul Gawande’s Being Mortal, published in 2014, has been hugely influential. Pulitzer-Prize winning columnist Ellen Goodman founded the Conversation Project to make it easier to initiate conversations about dying.
This fall, in San Francisco, a group called Reimagine End of Life, will be hosting its second gathering exploring death through music, comedy, dance, and the arts.
There are more than 100 Death Cafes scheduled this April, from Denmark to New Zealand to Texas. Sukhasiddhi has hosted more than ten in the past five years.
At the Sukhasiddhi gathering, after introductions, we settled into discussions at tables of four or five, and we took turns talking about why were there. I spoke about my mom dying last year, at 95. But more about her decline—how she lost her sight, then her mobility, then her mind. We had a small crowd on a sunny and gorgeous Sunday afternoon, but it was a very moving, intimate, and profound experience.
I left feeling grateful.
You can find a Death Cafe near you at deathcafe.com.
by John Byrne Barry | Mar 13, 2019 | End of Life
No one wants to talk about death, right? Most of us would rather talk about anything, even sex or money.
So it was somewhat of a surprise to arrive at the Mill Valley Library on a March afternoon to find the Creekside Room packed for a “Plan Well, Live Well, Die Well” workshop. (Somewhat of a surprise? Well, Mill Valley.)
The workshop was the first collaboration between the library and Mill Valley Village, a volunteer membership organization that helps older adults remain active, independent, and connected. It was led by the three founding members of Dyalogues — a Bay Area- based company dedicated to facilitating conversations about death and what matters most in our lives.
UCSF palliative medicine physician Dawn Gross, business development consultant Nancy Belza, and marriage and family therapist Paul Puccinelli kicked the workshop off by introducing themselves, describing the goals of the workshop — for participants to “have what they want, by starting with the end in mind” — and then passed out decks of cards.
We each received a deck of 43 cards, and we were to imagine that we were seriously ill, near the end of life. Each card had a wish. Such as:
— To die at home.
— To be clean.
— Not to die alone.
— To forgive (or make amends).
— Not to lose my dignity.
We were instructed to go through our cards and put them in three stacks — what we want most, what we pretty much want, and what maybe isn’t all that important.
(It was a challenge for me not to put almost all of them in the first pile, and I’m sure that was the case for many of us.)
Then we were asked to take that first pile, the cards with the wishes that resonated most for us, and narrow it down to three.
I picked: To be at peace. To be with people I love. To keep my sense of humor.
(I figured that if I’m at peace and I have my sense of humor, I can weather losing my dignity and not being clean.)
Then we worked with a partner, or two, to dig deeper. We were supposed to ask questions to help our partner get as clear as possible about what he or she wanted.
Dawn and Paul modeled the conversation for us. One of Paul’s wishes was: To be with people I love. Dawn asked him who those people were. Paul said his wife, his two children, and his dog.
Dawn asked, what does it mean, to be with them?
I’m in a bed at home, Paul said, and my family is being normal and I’m part of it. (Then came a discussion about whether the dog would be allowed on the bed — yes — and how some hospitals now allow animals for end-of-life patients. One participant also mentioned that there’s a way, through the SPCA, to arrange care for your pets after you die.)
We had half an hour to discuss our wishes with our partner(s). My partner and I got through two of our cards. In regards to my wish to be at peace, she asked me if I was at peace now, and I said yes, but not as much as I could be.
One of her wishes was to forgive (and make amends), and when I asked her to tell me more, she said there were people who had wronged her who were no longer in her life, but they were, “still renting space in my head.”
We both noted that what we wished for on our deathbed was just as true for the present, but we didn’t grasp until the wrap-up that that was intentional. That what we wish for the end of our life is generally what we want today.
“Take home number one,” said Dawn, once we finished our discussions. “This is about now. You don’t have to wait to have these conversations. What matters to you as you imagine the end of your life most likely matters to you now. If there’s a playlist of music you want to hear when you’re dying, don’t you also want to listen to it now?”
She did remind us, however, that what we want evolves. “My husband and I play this game every year on our anniversary. It’s one of the most intimate conversations of the year.”
With people we know well, she suggested we play the game in reverse. Instead of sorting the deck for ourselves, we sort it for our partners. See how well we know them.
She uses the cards with her patients, some of whom are too weak to hold conversations. She holds them one by one, sees if they nod.
The wish cards are not available yet — we were the first to use this particular set — but they will be later this year. But, of course, you don’t have to wait for a deck of cards to talk about your wishes.
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To learn more about Dyalogues, go to dyalogues.com/. You may also be interested in listening to Dr. Gross’ KALW radio podcast series, “Dying To Talk.”
To learn more about Mill Valley Village, and its parent organization Marin Villages, go to: marin.helpfulvillage.com/.
To find out more about future workshops like this, and other wonderful programs at the library, sign up for the Mill Valley Library email newsletter at millvalleylibrary.org. (That’s how I found out about this workshop.)
Also, the San Francisco Public Library has just started a new series called “Death & Dying: Rest in Peace,” with a free program every month through September.
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