Sarasota Death Cafe in Herald Tribune

STORY: Death Cafes give people a safe place to discuss end of life decisions

By CARRIE SEIDMAN  – 9/14/2014

carrie.seidman@heraldtribune.com

Herald-Tribune Photographer  Rachel S. O’Hara

Sarasota Death CafeOn a blazing summer afternoon, cars vie for the few shaded parking spots outside Radiance of Sarasota, a storefront in a small strip mall billed as a “wellness and inspiration center.”

Visitors, mostly aged 50-plus, enter the center’s cool, dimly lit quarters, where they’re invited to help themselves to tea, pastel-colored pastries, gluten-free brownies and a seat within a large circle of chairs.

They are not necessarily seeking radiance, wellness or inspiration. They are here to participate in a frank, open-ended discussion about life’s grand finale at the monthly Sarasota Death Cafe.

The idea? To provide a casual, comfortable space for people to discuss everything from the practical (legal documents and right to die legislation) to the ethereal (near-death experiences and the great “What’s next?”). The free gathering is based on the writings of a Swiss sociologist who believed talking openly about death could lead to a fuller, richer, more conscious life.

If that sounds a little morbid, a growing number of people would disagree. Death cafes are just one of the ways a subject once taboo — or at least uncomfortable — is coming out in the open.

Over the past year, Sarasota, with one of the oldest demographics in the country, has joined other communities across the nation in embracing frank discussions about the end of life — everything from how to avoid dying in the hospital to advancing legislation in favor of physician-assisted suicide.

A public lecture at the Selby Library by the president of the World Federation of Right to Die Societies in February drew a capacity crowd and went an hour overtime to accommodate questions.

Two panel discussions with end of life experts sponsored by the Herald-Tribune in March following its publication of “Dorothy’s Choice,” the story of one elderly woman’s choice to end life on her own terms, were standing-room only.

A 9 a.m. weekday screening in July of “Consider the Conversation,” an award-winning documentary that encourages people to plan ahead for their deaths, had to be moved to a bigger Lakewood Ranch theater to meet demand.

And the Sarasota Death Cafe, begun in May, tripled in size from the first meeting to the third.

Even parents and children are more frequently broaching the once-taboo subject, though Joelle Angsten, chief medical officer of Tidewell Hospice, doesn’t endorse the frequent suggestion to have “the conversation” over Thanksgiving dinner.

“I’d recommend while you’re in a car on a long trip,” she says, only half in jest. “That way you don’t have to look at each other but you can’t escape.”

As the aging but fiercely independent baby boomers effort to control their own destinies clashes with modern medicine’s ability to sustain life to extremes, a backlash is building. This generation is determined to rewrite the script on dying, much as they have altered social acceptance of living together without marriage, nursing babies in public or same-sex unions.

But it won’t happen, they say, unless we talk about it.

“No previous generations have had to figure this out,” Angsten says. “So there’s no role model. But we’ve adopted so many things that support social change — like maternity leave, for example. Wouldn’t it be great if we could figure out how to do that at the other end of life?”

CAFÉ’S BEGINNINGS

The first official “death cafe” was organized by a 40-ish father of two, Jon Underwood, who hosted the initial gathering at his home in East London in September 2011. Underwood’s “Mum,” a psychotherapist, helped to facilitate.

“They’re not being morbid,” Underwood said at the time of the original participants. “These are people who want to live more fully. The more we talk about dying and what it means about ego and self, the more we add to life.”

After he created a website, deathcafe.com, with instructions on how others could start their own chapters, the idea proliferated into a global movement. The first death cafe in the United States was held in Columbus, Ohio, in 2012; there are now hundreds of regular gatherings in this country and more than 1,000 meetings have taken place around the world.

The cafes — which have no set objectives, agendas or themes, nor any profit motives — reached Florida during the past year, with sessions held in Tampa, Naples, Gainesville and Ocala, as well as Sarasota.

Death Cafe Sarasota
Mark Sanders, one of the leaders of the Death Cafe, listens as people talk about their feelings on death and end of life issues during the Death Cafe at the Radiance Wellness and Inspiration Center on Ringling Boulevard.
Herald-Tribune / Rachel S. O’Hara)

The local group was started by Lori Marshall and her partner, Mark Sanders, who call themselves “spiritual mediums and life counselors.” It has drawn a diverse crowd: from psychics to educators, elders on oxygen to an 11-year-old girl who accompanied her mother and, at one point, burst into tears, protesting, “But I don’t want to die!”

Donna (who does not share her last name) says that when she first heard the term “death cafe,” she assumed it must be a party for Grateful Dead fans. Then she thought it was a joke. But as caregiver for both of her parents, who are in their 80s, she is looking for help with end of life planning.

Tobie DeSantis, who assists the elderly with end of life challenges — her business card advertises help with household needs, doctors appointments and “special projects” — came to learn more about Florida’s laws regarding deaths that take place at home.

Mark Tishman wants to help people through the dying process with a more natural approach than the one he was taught as a funeral director.

Susan Dana figured a birthday trip to the death cafe was a fitting follow-up to a stop at the Marie Selby Botanical Gardens for a glimpse of the Amorphophallu titanum or “corpse” plant, which blooms only once every few years and smells, so they say, like a decomposing mammal.

“Every month we’re not really sure what will happen,” says Marshall, who was motivated to start the group after the “amazing experience” of watching her father die in hospital hospice two years ago. “But everyone leaves feeling just a little more connected, a little more comfortable and little less fearful about the idea of death.”

Sarasota Death Cafe Lori Marshall
Jim Toole wipes his eyes with a tissue while talking about his relationship with his wife Jacqueline Smith-Toole and her late husband, John, during the Death Cafe gathering at the Radiance Wellness and Inspiration Center on Ringling Boulevard. Herald-Tribune / Rachel S. O’Hara

Death and how we deal with it has changed dramatically over the past century, Marshall says. Before advances in medicine made it possible to sustain life beyond “natural” limits, a death at home was the logical bookend to a birth that also took place at home. Family members held vigils as a loved one expired and personally prepared the body for burial.

Now, with most people dying in the hospital, the process has become clinical and the intimacy desensitized, she says; the body becomes an object to be whisked away to a crematory or funeral parlor and the vigil agonizing or feared.

No one gathered here thinks being hooked up to a ventilator matches their idea of a graceful, dignified leave-taking. But they aren’t necessarily unified about what does. Over the course of two hours, the conversation veers from the inadequacy of living wills and “Do Not Resuscitate” orders to how to communicate with those “on the other side.” At one awkward moment, it even segues into someone’s tirade about drones, but that topic is quickly shut down. Organizers are emphatic that meetings are not meant for grief counseling nor political rants.

For the most part, the exchanges are sensitive, thoughtful and accepting of a diversity of opinion. In fact, were it not for the skeleton skull that decorates the refreshment table, you might think you’d stumbled on a friendly coffee klatch or a “Meet Up” group. Though there is plenty of solemnity and even the occasional tear — Marshall has learned to have a box of tissues on hand — humor surfaces just as readily.

In fact, it doesn’t take much more than the brief self-introductions that kick off the session, to demonstrate that, while death may be no laughing matter, it can elicit plenty of good-natured jokes.

One elderly man smiles endearingly at the woman seated next to him as he shares that on this very date 56 years earlier, they were in the middle of their wedding ceremony.

With perfect comic timing, John St. Clair, a retired probate attorney, quips:

Lila Ivey from Hospice of Marion County, right talks about option during the discussion at a Death Cafe meeting at Lauri’s home in Ocala, Florida. The group meets regularly to talk about death, end of life options and personal experiences they’ve had with loved ones dying. Ocala Star-Banner / Alan Youngblood

“Well if that’s the case, no wonder you wanted to come to a death cafe today!”

BROADENING THE CONVERSATION

Not every death cafe takes place in a public place.

In Ocala, monthly meetings that began last October were moved from Mojo’s Grill, which proved too hot, noisy and distracting, to the comfortably middle-class living room of Teddy Laury.

Jovial and direct, Laury is a native of the Netherlands, the first country to legalize physician-assisted suicide in 2001 and the catalyst for starting this first death cafe in Florida. She is not accustomed to holding back her opinions on death or anything else, for that matter; the back of her SUV bears bumper stickers with environmental, political and religious slogans.

“Holland has always been a refuge for people persecuted for every reason,” she says, with a gutteral accent. “In the Netherlands, we talk about everything.”

So does this group of eight people — plus one dog and two cats — who met on the last Monday evening of July in a cramped circle, perched on an assortment of overstuffed chairs and furniture dragged in from the nearby screened porch.

Donna Wright and her friend, Lee Hansen, arrive a few minutes late after the 30-minute drive from their home in Cross Creek. Wright promised her late husband she would not allow him to suffer during his death from cancer; Hansen worked for many years in hospice.

Diane Podkomorski is an administrator at an assisted-living center looking to “open people’s eyes to the fact that you can’t wait until the last minute to make your plans.”

Don and Dave Laury, Teddy’s brothers-in-law sit mutely on the couch; they are here because they are Laury’s health care surrogates.

Whether because of its seniority, make up or location, this meeting has a different feel than the one in Sarasota. There are salty snacks and beer on the refreshment table as well as coffee and cookies and the conversation is less New Age and more topical, occasionally getting sidetracked by current events.

At a previous meeting the group watched a Dutch documentary about assisted suicide. But at this one, like most, there is no visual or verbal “prompt,” just friendly, like-minded chat about what Hansen calls “our death-denying, death-defying” world.” Laury sees that attitude as particularly American.

“This country is all about winning and American doctors feel like they have to win the fight,” she says. “Whereas our doctors in Holland look much more at the quality of life.”

For example, she says, when she recently refused a mammogram based on her conviction that, even if she had cancer, she wouldn’t choose to treat it, her doctor responded with: “I did not hear you say that.” When she speaks of her late husband’s choice to refuse chemotherapy after a diagnosis of stage four lung cancer — he loved food and enjoyed a steak and potatoes dinner the night before he died — it comes with a warning about the difficulty of charting a course that defies the medical model.

“When I asked for a referral to hospice after his diagnosis, the nurse gave me the dirtiest look, like, ‘So, you’re trying to get rid of him?'” Laury recalls. “And even as on top of it as I was, I let the oncologist talk us into a test that put him in the hospital for two days. He died at home, but I had a hard time getting him back out.”

Agrees Hansen: “Once that 911 call goes in, it’s out of your control.”

When the talk turns toward physicians’ inability to discuss end of life with their patients, Lila Ivey, the outreach coordinator for Marion County Hospice, is sympathetic, but pragmatic.

“Our doctors don’t want to go to jail,” she says. “They’re trained to meet people where they are, but people are uncomfortable talking about this with their own families. They’re certainly not going to talk to their doctors.”

Leslie Robertson makes a point during a Death Cafe meeting at Teddy Lauri’s home in Ocala, Florida. The group meets regularly to talk about death, end of life options and personal experiences they’ve had with loved ones dying. Ocala Star-Banner / Alan Youngblood

Leslie Robertson, who is working on a graduate degree in suicidology — she’s careful to clarify that means counseling people who are suicidal, not advocating for it — wants to be part of altering attitudes about what constitutes a “good death.” She represents the youngest edge of the boomer generation, and believes a tidal shift is coming.

“Older folks might have wanted to go to the hospital to die, but baby boomers don’t,” says Robertson. “I feel like we need to let the community know there’s a better way.”

 

THE FINAL EXIT

Back in Sarasota, a group of eight gathers at the home of 73-year-old Roger Kendall.

They don’t call it a death cafe; many of the participants have never heard the term. But dying is the subject and the discussion is anything but abstract.

They are members of Final Exit, an outgrowth of the original Hemlock Society, a right-to-die organization. Final Exit provides information and counseling to those with terminal conditions that would allow them to carry out their own deaths without interference or legal liability.

“For people of a like mind, it’s all very comfortable, very normal,” says Kendall, who hosted the gathering at his home this summer. “These people aren’t upset or depressed; they’re realistic and they want their questions answered.”

The conversation here is narrower and more defined; the participants already have decided that, if their health deteriorates to a point where they have no quality of life, they will end things on their own time frame. What brought each of them to that conclusion is personal, though watching a loved one suffer proves to be a common impetus.

“I watched my father, who was very ill, agonize and pass away slowly about 20 years ago,” Kendall says. “It was hard on him and hard on the family. So when I heard there was an organization that would discuss this with you and how you could take control of your end of life situations, it interested me.”

Currently, the most readily available and painless method for what Florida law calls “self murder” — and the one Final Exit advises — is the use of a helium tank and a hooded mask. But Kendall wishes there were more, and better, options. So he has also joined Compassion and Choices, another Hemlock Society outgrowth, which lobbies for legislative change around physician-assisted dying. (No one here refers to it as “suicide.”)

“I think the ultimate solution is not Final Exit, but to change the laws,” he says. “It would bring me tremendous peace of mind to know I could get a physician to help me end my life peacefully, gracefully and legally, without exposing anyone else to any legal action.”

A curtain was drawn between two rooms to give the group some privacy during the Death Cafe gathering at the Radiance Wellness and Inspiration Center on Ringling Boulevard. Herald-Tribune / Rachel S. O’Hara

A curtain was drawn between two rooms to give the group some privacy during the Death Cafe gathering at the Radiance Wellness and Inspiration Center on Ringling Boulevard.
Herald-Tribune / Rachel S. O’Hara

Maia Rubin, who hosted the group in June, feels the same way. She is 84 and widowed. Her husband died after being seriously ill for two years (she declines to reveal exactly how) and her only surviving child has a mental health condition. An artist who works in basketry and lives alone, her quality of life, for her age, remains good. But when that’s no longer the case she does not want to enter a nursing home or “chew up the income” for her son’s future care with extensive medical interventions.

“A lot of us feel we don’t want to wait until we’re terminal,” Rubin says. “But I don’t think this is something you should do completely alone.”

A close friend who previously agreed to be her medical surrogate recently moved away and another “is quite frightened of the whole thought.” So the like-minded people she has met through Final Exit provide her with the assurance that, when the time comes, she will have support.

She knows she’s not the only one entertaining the thought.

“I don’t think anyone wants to end up in a hospital connected to tubes, but most people do,” Rubin says.

“I think there are a lot of people who are quietly arranging things to suit themselves but they don’t publicize it because nobody wants a lawsuit and it’s a very fraught subject.

“But as far as I’m concerned, the more openness there is about this, the better.”

Sunday’s front page story, “Inside the Death Café,” detailed a growing movement, in Sarasota and across the nation, to encourage more frank, open discussion of what was once a taboo subject — death and dying.

The Sarasota Death Café, which began in May, is but one of more than a thousand groups internationally based on the writings of a Swiss sociologist who believed talking openly about death could lead to a fuller, richer more conscious life. It hosts monthly meetings where people of all ages can converse informally about death and end of life issues over tea and refreshments.

Other groups, including the local chapter of Final Exit, an outgrowth of the Hemlock Society, also provide information and meeting opportunities to encourage planning for a “death with dignity.”

Below is a list of resources that was omitted from the article:

Join the conversation

Published: Sunday, September 14, 2014 at 7:24 p.m.
Last Modified: Sunday, September 14, 2014 at 7:24 p.m.

Death Cafe of Sarasota: 1:30-3:30 p.m. the third Saturday of every month at Radiance Wellness and Inspiration Center, 2868 Ringling Blvd. 312-4549; www.continuityoflife.com. Next meeting Sept. 20. To find other death cafe locations in Florida, go towww.deathcafe.com.

Final Exit: An outgrowth of the Hemlock Society that offers free counseling on end-of-life options for those suffering from a fatal or irreversible physical illness, intractable physical pain, or chronic, progressive physical disabilities. www.finalexit.org

The Conversation Project: Begun in 2010 by writer Ellen Goodman, this website is dedicated to encouraging and assisting people to communicate their end of life wishes. It offers a free online “Getting Started” kit. www. theconversationproject.com

Aging with Dignity: Provides an online version of the Five Wishes, a popular living will inspired by the work of Mother Teresa, that meets legal requirements in 42 states, including Florida.

Compassion and Choices: Another outgrowth of the Hemlock Society which lobbies to pass legislation ensuring access to greater end-of-life care options. www. compassionandchoices.org

Consider the Conversation: An adjunct to a documentary film of the same name, this website offers a compre- hensive range of information about end of life planning under its “Resources” tab.www.considertheconversation.org.

National Healthcare Decisions Day: A movement to inspire and educate health care providers and the public about advance planning for end of life decisions. www.nhdd.org

 

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