Can a shift in the way we treat death and dying improve our lives while we’re still here?
A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death
These days, for the most part, the concept of death is consumed by health care and medicine.
However, as humans we need to view death as more than just a medical event. It takes into account our psychology, spirituality, philosophy, social worlds, and personal lives.
This reconsideration should also apply to the way we treat people who are dying. Life is in the senses, not just our physical capabilities.
BJ Miller: Health care, medicine in our country is a giant, colossal thing. And it’s got a ton of momentum. And medicine has become– the domain of death is more or less ruled these days by health care. In times past, it’s been the church, or the family was the sort of center of all this.
These days, it’s mostly medicine. But what’s really important in all this is that we people, we humans, we patients, loved ones, we need to kind of take back the subject on some level– that dying is not just a medical event. It’s way bigger than that. It is all-encompassing. It’s where everything comes to account– our psychology, our philosophy, our spirituality, our social world, our intrapersonal lives– all of it. The medical piece is a little itty bitty piece. It just gets too much attention.
So I’ll just think about the emotions for a second. For one thing, to remind ourselves– for me, the difference between emotion and a thought is you can control your thoughts. You can’t really control your emotions. Emotions are much more slippery. They’re going to have their way with you. So you ignore them at your own peril.
That’s one thing to get across. But I also say that to let us off the hook. The way you’re feeling, on some level, isn’t your fault. And one of the things I see that happens a lot around this subject– again, we’ve talked about how one can be made to feel ashamed to be sick, ashamed to be dying, like we’re failing, somehow.
I want to make sure that we all understand, there are certain things that are way beyond our control. And that means– that may be hard to swallow, but it also means we’re off the hook. It’s not my fault, the way I feel. I shouldn’t have to hate myself or be embarrassed about it. So let’s set some ground rules.
And there’s this other layer that is particularly vexing, which is how others start treating you. And it’s very common, under the banner of sanctity or wanting to protect someone, to– I watch people, they stop telling jokes. Maybe they think it’s sort of sacrilegious to try to be funny around someone who’s sick. Or maybe they don’t talk about their own joys that they happen to have in their day while their colleague is meanwhile miserable with a fever or something. They don’t feel like they should talk about their own joys. Or I don’t know, whatever it is– pick anything.
But one of the things that ends up happening is we end up accidentally making life even harder for each other by keeping the truth of the situation at bay. All right? So these are the ways we die before we have to die. We die before we have to die because no one tells jokes to us anymore because they don’t think we’re going to want to laugh, or that sounds perverse.
Or maybe our partner stops the intimacy. Physical intimacy might dry up, or sexuality. The idea that a disabled person can be sexual, that’s still a novel concept. Just look at most exam rooms in a doctor’s office or in a hospital. Most of them are not even wheelchair-accessible.
My mother uses a wheelchair. They used to just assume she wasn’t having sex, so they wouldn’t offer her a pap smear.
And so one of the things you want to avoid if you plan for your death is you want to– ideally, we come to our death without piles and piles of regret. So when I’m working with patients, especially upstream of their death, I’m always encouraging them to feel things, enjoy the body they have while they have it, appreciate their body while they have it, because it’s someday going to go, and you’re going to miss it.
So touch is just profound. It’s elemental. It is, even if you think about, I think, the scourge of dementia, for example– and a lot of us are terrified of this eventuality. We’re going to lose our minds. Yeah. And it’s hard. And that is a very difficult prospect. And I’m also pretty convinced that there’s a life on the far side of our intellect.
And for me, that life is in the senses. As long as I can feel something, I’m interested in being alive. I’m even more interested in that than a thought.
The dinner table is the most natural place for human connection and difficult conversations.
80% of people want to die at home, yet only 20% of people do.
This statistic is what helped the founder of Death Over Dinner, Michael Hebb, to recognize the opportunity in creating meaningful conversations around death… over dinner.
“The dinner table is the most natural place for human connection and difficult conversations. The comfort of food and drink goes a long way toward taking the edge off of this topic,” says Hebb.
What is Death Over Dinner?
Death Over Diner was launched in 2013 as an extension of a conversation with friends and colleagues around things that matter. It turned out that amongst topics, death was a central theme –– the fears most harbor about it, both for ourselves and those we love.
The Death Over Dinner website walks individuals through how to host their own dinner, including choosing something for your guests to read, watch, and listen to prior to the dinner.
Since launching, Death Over Dinner has become a global phenomenon, with people holding death dinners every day all over the world. From New York to Seattle, and everywhere in between, more than 200,000 people have used DeathOverDinner.org to talk about:
· Life wishes especially in final days
· End-of-life care desires
· Palliative care desires
· A living will
· Their own mortality
· Fear surrounding death
· and more.
Collaborators including Chase Jarvis, Arianna Huffington, Dr. Oz, The US Surgeon General, and Former Senate Majority Leader Bill Frist have all hosted robust conversations over dinner, as well as have set up an online tool to help others have this important conversation. In 2017, Death Over Dinner joined social wellness venture RoundGlass to expand their mission and reach.
To get a better understanding of how (and why) this started, what is happening now, and where it is going now that the death wellness movement is in full swing, let’s dive in to some questions.
How did Death Over Dinner Begin?
Death Over Dinner actually began as a graduate course Hebb taught at the University of Washington in the Communications Department.
Over a four-year time period, Hebb and a variety of different students and collaborators including Chase Jarvis, Arianna Huffington, Tom Kundig, and Kate Bailey, explored how they could scale meaningful dinner table conversations about critical issues we face as humans.
In the second year, they landed on death and end of life as the primary topic, inspired by the tremendous gap between what people want at the end of their lives and what they get.
The life changing statistic that 80% of people want to die at home yet only 20% of people do was the primary inspiration for the future of Death Over Dinner.
Death literacy was at an all-time low, and open conversation could potentially revolutionize the health care system. The team recognized that a grassroots movement was needed.
Since then, Death Over Dinner has spread across the world, with people holding death dinners every day across the globe.
How Many Death Over Dinner Events Have Been Held?
Since the events are independently organized and people re-use the resources multiple times for multiple dinners, it will always be difficult to know the precise number of dinners held.
The conservative estimate is that 200,000 dinners have taken place, which means that roughly 1 million people have sat down and had the experience of talking about death with others in their family and/or community.
Regional partners have helped launch platforms in Australia, India and Brazil and two years ago the Jewish Edition of Death Over Dinner was launched in partnership with about 30 rabbis.
The Healthcare Edition build in partnership with the Cleveland Clinic is currently in beta and being tested by dozens of the leading health care systems in the US.
For the founder, Hebb, there is nothing more thrilling than to sit down with doctors and nurses and see precisely how meaningful these conversations are to those who are facing death everyday.
How Do The Death Over Dinner Resources Help People Facing Death?
Let’s face it, no one is truly an expert on death. Few people have experience with death and many choose to run far from a conversation about it. End of life conversations are inherently difficult to initiate and can be stressful to navigate for anyone.
That’s why Death Over Dinner strives to make the process crystal clear, and formulated the concept similar to a board game. When you know the rules, it’s easier to relax and just play.
Designed to be held without facilitators, Death Over Dinner gives a little guidance to get started. From there, people intuitively know how to talk about what is most important to them.
Vulnerability is unquestionably the winning move in the Death Over Dinner “board game.” The questions Death Over Dinner prompt allow people to drop their armour and open up about their fears.
Death Over Dinner encourages people to not edit their responses and to say things they are afraid to say. Doing this brings individuals closer to knowing their priorities, and it brings them closer to the people in their life.
Why Are Death Over Dinner Conversations So Important?
The impact of grief on our well-being can be detrimental and difficult to calculate.
Roughly 25% of us are actively grieving, which begs the question, how are we grieving? If we don’t know our loved ones wishes, will we grieve longer and more intensely? Will we carry regret and have difficulty letting go?
Not to mention that the end of life expense is the number one cause of personal bankruptcy in the United States.
However, when we face our mortality, there are many beautiful things that happen.
“There is no better medicine than end of life awareness to give you clarity about what is truly important to you, your values, your priorities, how you want to live. Life becomes more clear and sacred when we thoughtfully and intentionally face our impermanence,” says Hebb.
Studies done by Dr. Jordana Jacobs and other leading psychologists prove that talking about death actually increases our capacity to love. Other studies have shown that we become funnier and laugh more easily after being primed for death.
“There are two basic motivating forces: fear and love. When we are afraid, we pull back from life. When we are in love, we open to all that life has to offer with passion, excitement, and acceptance.” John Lennon
What’s Next For Death Over Dinner?
When Death Over Dinner was created, Hebb’s moonshot was that they could find a way into the center of the American medical establishment and inspire clinicians to talk about death in an open hearted and vulnerable way.
Knowing that oncologists, nurses, survivors and cancer patients are breaking bread every month at Memorial Sloan Kettering takes Hebb’s breath away when he gets present and lets it sink in.
“To think that we are really just at the beginning seven years after we launched, just starting to crack open the potential of this conversation, that is awe inspiring,” says Hebb.
Since the launch of Death Over Dinner in 2013, death literacy in the US has increased, and people are beginning to make more empowered decisions. The global death wellness movement and conversations around end of life are now front page news.
People are getting more creative, using their imagination for planning their last chapter and planning memorials.
There’s a shift from a reactive to a proactive approach to end of life well-being, and the movement is just getting started.
Mary Beth Bowen holds a portrait of her mother, Rosemary Bowen, who died last year at 94. Mary Beth started filming her mother’s last days as she stopped eating and her body shut down.
When Rosemary Bowen hurt her back last fall, she was diagnosed with a spinal compression fracture, a common injury for people with osteoporosis. At 94, the retired school reading specialist was active and socially engaged in her Friendship Heights neighborhood, swimming each day, cooking and cleaning for herself, and participating in walking groups, a book club and a poetry cafe. Doctors assured her that with physical therapy and a back brace, she would probably recover in about three months.
Instead, she announced to her family and friends that she had decided to terminate her life by fasting. After saying her goodbyes, she stopped eating, and in the early morning of the eighth day of her fast, she died in her sleep.
But first, Rosemary asked her daughter, Mary Beth Bowen, to film her fast. The final week of her life is now documented, day by day, in a 16-minute film, which was shown publicly for the first time Saturday at the End of Life Expo hosted by Iona Senior Services in Tenleytown.
It may sound macabre to hold a camera up to a dying woman. But Mary Beth said her mother wanted to spread the word that there was a legal, relatively pain-free way to end one’s life. “She thought that more people should take advantage of it,” she said. “She wanted to show people that it could be peaceful and even joyful.”
Rosemary’s plan didn’t completely surprise her family. She had lived through the Depression, when her father lost his job and moved the family to their grandmother’s farmhouse in Magnolia, Wis. Perhaps because of that experience, she was horrified by the idea of imposing on others, even temporarily, to the point where she would stay in a hotel rather than with family. “For all my life, she used to say, ‘People should row their own boats,’ ” Mary Beth said.
Rosemary had seen friends in their 90s who had slowly declined, and as far back as 1979 she wrote about her aversion to an old age with loved ones “shuffling in and out of rest homes visiting me.” When a friend ended her life by fasting, Rosemary decided someday she would do the same.
“At every family reunion she would talk about it — ‘When I get to the point where I can’t care for myself, then I’m going to hasten my death through fasting,’ ” Mary Beth said. “… She said, ‘Old Eskimos, they would just go off and die,’ and she thought that made so much sense.”
After her injury she spent two weeks at a rehab facility, and her daughters talked her into trying out an assisted-living facility. But she hated that she needed help with basic tasks such as cleaning herself, and after two days there she decided to go through with the fast.
Family members begged her to reconsider. Didn’t she want to see her great-grandchildren start to grow up, Mary Beth asked. One of Rosemary’s daughters said she was hurt that Rosemary would not stick around to see her granddaughter graduate.
But Rosemary was adamant. “She said, ‘I’m sorry, but I have to do what’s right for me,’ ” Mary Beth said.
A ‘good death’?
Rosemary would have preferred to take a pill to quickly end her life, but only a handful of states have aid-in-dying laws, and Maryland is not one of them, though it came close to passing such a bill earlier this year. Fasting, or Voluntarily Stopping Eating and Drinking (VSED), is not prohibited by any state.
There is no count of how many people choose this route, but it is gradually entering the public conversation. Radio host Diane Rehm revealed on a 2014 segment that her husband, who had suffered from Parkinson’s disease, had brought about his own death by fasting.
Depending on the person’s health and other circumstances, it can take from a few days to a few weeks before death occurs, according to published studies on the method. Refraining from drinking liquids can significantly hasten the process, as a person can survive for a long time by fasting alone. Proper mouth care is essential for a comfortable death, including keeping the person’s lips moist. Aggressive treatment for pain should also be available.
In a 2015 study, 80 percent of family physicians in the Netherlands who had treated VSED cases said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time until death was seven days. Doctors reported that 14 percent of their patients suffered pain in their final three days, and smaller percentages experienced fatigue, impaired cognitive functioning, delirium, and thirst or dry throat.
The results were similar to that of a 2003 study in which hospice nurses in Oregon were asked if they had treated patients who chose to stop eating and drinking. Eighty-five percent of those patients died within 15 days, and the nurses’ median score for the quality of their deaths, on a scale from 0 (a very bad death) to 9 (a very good death), was 8.
Even so, many advocates for aid-in-dying laws argue that people should not have to draw out their own deaths in such a way. Rehm made that argument vociferously after the death of John Rehm, who chose VSED after his doctor said he couldn’t give him drugs to end his life.
David L. Bowen and his wife Rosemary Bowen.Rosemary Bowen’s beloved sewing machine
The next step after Rosemary decided she wanted to end her life was getting into a hospice program so she could receive aggressive pain medication and other support during the fast. Although she did not technically qualify for hospice since she didn’t have a terminal illness, an Iona staff member helped find one willing to accept her.
In the days leading up to her fast, Rosemary said goodbye to close friends and family members, and started eating half-size meals. Her last meal, for dinner on Dec. 5, was crab cakes. The next day, she stopped eating — and her daughter started filming.
The first scene shows Rosemary smiling, propped up against a blue satin pillow, her short gray hair framing her face. “I am leaving life with great joy,” she says. “I cannot tell you how content I am and I recommend it highly to do it this way. Be in control. Don’t let people decide anything about you and keep you doing a lot of procedures that are not going to benefit your health at all. Just get on with it and go.”
On Day 3 Rosemary says she feels “Okay. Good. Happy. Relieved.” On Day 4, her voice is still strong, and she has returned from walking down the hall with her walker.
Around then, Rosemary became impatient. She felt fine — too fine — and wondered why death was taking so long. Her daughter pointed out that she was still having small sips of water each day with a pill. So she stopped that, instead relying on tiny wet sponges to hydrate her mouth.
By Day 5, her voice cracks as she reports feeling “weaker, and I’m delighted.”
On Day 6, Mary Beth breaks from her neutral observer role and asks if her mother has any regrets about what she’s doing.
“Absolutely none,” Rosemary says.
“But you know that I would much rather have you live for another year or two,” Mary Beth says.
“Oh God,” her mother says with a grimace.
Mixed reactions
The film does not skip over difficult parts, including the last day Rosemary is conscious, when her mind starts to wander as her organs shut down, and she slips into a deep sleep.
In the audience at Iona, the film elicited mixed reactions.
Gerry Rebach, a former hospice nurse whose mother hastened her death with a fast that took 21 days, said, “It’s not easy, and this movie made it seem easy. I would hate for it to give false impressions.”
Rebach said she cannot imagine herself following her mother’s example. “I think it takes an incredible act of will to be sentient and be able to do that.”
Jean McNelis, a Friendship Heights resident who was friends with Rosemary for 20 years and watched the film Saturday, said she is in the process of figuring out details of her living will, will, and power of attorney. “I don’t have any opinion formed yet about what I want,” she said. “She gave me things to think about.”
Carol Morgan, 78, of Columbia Heights, was upset by the film. Her mother had also fasted to hasten her death in 2006. “It broke my heart,” Morgan said. “I couldn’t bear to see it. … There’s something in me that rebels against it.”
For Mary Beth, the filming was excruciating. She would mostly hold her tears back when she was with her mother, then burst into sobs in the parking garage.
But she saw how happy Rosemary was with her decision. “I felt so gratified that I was helping her on this journey that she was on,” she said. “We were in it together. We’ve always been close, but we became even closer. We’ve never been closer than that last week.”
In the end, helping her mother end her life felt like a sacrament. And filming it felt empowering. Since Rosemary’s death, several of her mother’s friends have told her they are considering following her example, she said.
When Esther Delaplaine, 95, a friend and neighbor, visited Rosemary during her fast, she said, “I had a chance to tell her … how her manner of going was a guide to me in some future that I would be facing.”
That was what Rosemary was hoping for. In the final scene of the film, she can be heard saying, “I feel so privileged to be exiting life like this, and think of all those people who are wringing their hands and saying ‘If only God would take me,’ and all they need to do is give God a little help by holding back on eating and drinking.”
By then, the bed is empty, the blue satin pillow still on it.
Often, the worst kind of dinner party is one with a bunch of strangers: It’s hard to break the ice, and if small talk dies, you might end up sitting in stony silence. But the dinner I spent Sunday at Ballard’s Brimmer & Heeltap came preloaded with excited chatter.
This was all the more surprising given the preordained topic: Death. And before I’d even picked up my fork, one purple-haired seatmate, Elly, was already telling us from across the dinner table about the passing of her grandma.
Elly said her grandmother’s death was about as clean as they come. Her grandmother was comfortable talking about it with Elly, she had distributed her belongings long before it happened, and her family was close by at the time of her passing. She even had a “death doula” to assist her during the process. Grandma planned it all out.
“That’s a good death,” Amanda, another participant, said enthusiastically at the end of Elly’s story. Everyone else at the table nodded in agreement. About 40 of us had gathered for Death Over Dinner, a Seattle-based nonprofit dedicated to reversing the pain and suffering associated with mortality.
Dying well means different things to different people. Maybe it’s dying for a good cause, or just dying when you’re still cognizant of your surroundings. But planning my funeral now, at age 23, is something I’d never considered — until I heard about death positivity.
Death positivity is a movement to get people comfortable talking about their eventual demise. Washington is a uniquely good place for it. You can go to one of Washington’s numerous death conventions or parties, such as one hosted by the People’s Memorial Association (PMA) in December. Many of its biggest supporters, like PMA’s Executive Director Nora Menkin or Katrina Spade, founder of Recompose, make their home here. And most death-positive advocates know the statistic that although 80% of people want to die at home, only 20% actually do, so they say these conversations are a good way to learn the last wishes of the people you love and to express your own wishes before it’s too late.
For the environmentally inclined, Washington has long been on the cutting edge of what a green death could look like; death positivity is often linked with green options, which offer even more choices for people to consider when planning their deaths. This includes green funerals — basically, environmentally conscious funerals that can include everything from recomposition to water cremation to green burials (also known as natural burials), which allow the body to naturally decompose without preservatives. And a cemetery in Bellingham, Moles Farewell Tributes, became the first certified natural burial ground in an existing cemetery in the nation and the 12th cemetery certified overall by the Green Burials Council in January 2009.
In addition, “recomposition” (frequently called “human composting”) was legalized this year along with water cremation, adding to the list of environmentally conscious ways you can dispose of your body post-mortem. Water cremation, also known as alkaline hydrolysis, is basically cremation with hot, chemical-filled water instead of fire inside a pressurized vessel. (Water cremation of pets has been legal for much longer.)
Advocates say that the death positivity movement, combined with the legalization of more options, has moved forward conversations about it further than ever before.
“Death is having its moment right now, in a lot of ways,” says Brian Flowers, green burial coordinator at Moles Farewell Tributes. “So that education is happening at a pretty rapid pace.”
Michael Hebb, the founder of Death Over Dinner, is one of those advocates in Washington persuading people to talk with their loved ones about their mortality. While most of Hebb’s dinners happen independently among families (you can download a template to host your own from his website), the dinner I attended was one of the first around Seattle where participants had a chance to delve into death with strangers. For me, those strangers were Amanda and Elly, who are longtime friends, on my left, and a quieter, elderly couple, Sheryl and Bill, on my right. Each person was fairly comfortable talking about their deaths; Sheryl told the table that her last meal would involve potatoes, and Bill matter-of-factly said all he would want was a mango.
Hebb took a moment at the beginning of the dinner to walk participants, seated all around the restaurant, through the night’s proceedings: On each table was an envelope with five short questions about death, ranging from playful to serious. “What would you choose as your last meal?” “What are your wishes for your body after you die?”
But before we could answer, he brought our attention to the candles by our dinner plates.
“The first thing that happens at the table is we all take a moment and think about someone who has died, who had a powerful impact on our lives,” Hebb told us. “Really the first person that comes to mind.” Then, each participant was asked to give that person a short eulogy to their table before lighting the candle.
I knew mine in seconds. Hebb told us to hold on to that person, even if it made us uncomfortable. Vulnerability, he said, was key to making this work. So I held on.
Participants engage in conversation during a Death Over Dinner event at Brimmer & Heeltap in Ballard on Oct. 27, 2019. The dinner series, started by Michael Hebb in 2013, is meant to facilitate and normalize open conversations about death in a positive way.
* * *
Most people I talk to know what they want their funeral to look like. Some friends told me they wanted something cheap and easy. Others were quite specific: One roommate told me she wants her cremated ashes exploded in fireworks; another said she’d like her body detoxified and eaten up by mushrooms (she told me this while cooking mushroom risotto). An ex used to tell me he’d like his body shot out of a cannon. When I sent my sister the question over text, she replied seconds later: “Make me a tree for sure.”
My parents also had a response at the ready and told me they’d want a quick burial, no fancy stuff, the day after they die. In Guatemala, most funerals happen that way; there’s no weeklong preparation. When my Abuelito Quique passed away in Guatemala City, my dad flew out from the Seattle-Tacoma International Airport the night it happened and arrived just in time for the funeral services the following morning. Abuelito Quique’s funeral might qualify as “green” in the U.S. — or at least greener, since there’s no need to preserve the body through embalming or other chemicals.
Most Americans these days don’t pine for a cushioned casket in which to put their immaculately preserved corpse. In Washington, almost 80% choose cremation; the national average sits at about 50%, according to a 2017 study. Curiosity about greener funerals is on the rise, too. Adults over 40 interested in green funerals jumped nationally from 43% in 2010 to 64% in 2015, according to a Funeral and Memorial Information Council study.
“In the time that I’ve been doing this, it’s accelerated tremendously,” says Lucinda Herring, a green burial consultant and author of Reimagining Death. “I think that’s only going to grow, particularly with baby boomers who are taking care of their parents and themselves.”
But a greener death doesn’t mean an easier one. There are plenty of hoops to jump through before getting a body in the ground — especially for greener burials. Part of it is the lack of options. In Washington, only a handful of cemeteries allow green burials, some of which are certified by the Green Burial Council. Preplanning is often necessary in order to ensure that the deceased can even be taken to a green burial site.
“[Plots are] hard to get to so, numberwise, there’s probably enough to meet the demand right now, but they’re spread out geographically in a way that’s challenging for families,” Flowers says. At his location, he’s helped service families from cities as distant as Olympia or Boise, Idaho.
Until Herring helped perform her first green burial in the ’90s, she and her friends didn’t know that such a thing existed. A friend dying of breast cancer told her and others that she didn’t want her remains to go to a funeral director. She wanted a funeral at home. It was only after some research that Herring discovered it was possible and legal to care for the body immediately after death at home.
Still, Herring says the increase in public interest has made educating others a little easier. She also emphasizes the need to plan ahead.
“If you’re looking for a green burial plot, you should very much talk to cemeteries and ask if they provide green burial,” she says. “Because doing it at need if someone dies quickly is difficult.”
Some of those barriers to green burials are coming down. With the legalization of water cremation for humans this year, Washington bodies no longer have to be shipped to other states (typically Oregon) for the process. Flowers says Moles Farewell Tributes was one of only a dozen green burial sites when it opened its green cemetery in 2009.
“We’ve definitely seen a shift,” Flowers says. “Now, there’s over 300.”
Flowers and others say lack of information is the biggest barrier keeping green death options out of the mainstream. Spade, the founder of Recompose, says that when people are taken aback by the idea of composting their remains, she usually let’s let them mull over other options before pressing further.
“If you really think of the traditional method, [and] you think of embalming, you’d think, ‘Oh, that’s intense also,’ ” she says, “So honestly, I usually just let it lie. I think people need their own time to come around to it.”
After telling her about the dinner, I asked what I should do if I ran into a person like that myself. She laughed a little. That shouldn’t be an issue, she says: “If you’re attending Death Over Dinner, you’re perhaps more comfortable than the average person.”
* * *
We began to light our candles at the dinner table, and when it was my turn, I returned to third grade. Anisha was one of my best friends, a small Muslim girl with chubby cheeks who shared my adolescent love of the Disney Channel show Kim Possible, whose brother we tormented by hiding his Pokemon cards under her bed, who I would talk to for hours on the carpeted floor of her bedroom, and who passed away from heart failure one night a couple years into our friendship.
My parents told me in our driveway, next to our minivan on a slightly humid, overcast afternoon. We talked about what it meant, and about God. The rest came in pieces: the news of her funeral, which happened quickly and privately, and then the realization that I would never see her again. When I visited her parents’ house the week of her death, Anisha’s mother told mine that she’d looked like she was only sleeping. There were cookies on the table that I didn’t eat. I remember wanting one but passing because everything felt so strange that it didn’t make sense to enjoy chocolate chips.
I’ve told myself this story many times. Retelling it now feels like reciting a mantra, one that’s simplified in its repetition, but has become as much a part of my life as my name or the soft scar on my knee. When I encountered my next death, I can’t say I was ready, exactly, but I knew who to talk to about it.
Finding comfort in talking about death takes practice. Hebb told me that he hadn’t always had that himself. Conversations about death in his family were nonexistent. Hebb’s dad was over 70 when he was born, making it likely he would pass before Hebb graduated from college, or even high school. He realizes that logic now but says he didn’t think much about it when he was a kid. When his father died, Hebb was 13, and his family didn’t know how to talk about it.
“It really devastated our family,” he says. “The majority of the time we’re faced with this conversation, it’s when something has gone horribly wrong or when it’s about to.”
Hebb says his father didn’t get to explain what he wanted from his death, and his family was left with a pain they didn’t know how to process. Just knowing how to talk could have made the situation much different.
The five other guests at my table expressed varying degrees of comfort with talking about the deaths of those close to them. I’d never told the story of Anisha to a group of strangers, and the words felt odd coming out of my mouth (it didn’t help that this happened before we got appetizers). But there was also peace in the process. Everyone listened. I listened in return. And by dessert, we were already planning what we wanted our funerals to look like in detail. I’ve always wanted a burial I can call “green,” whether that means turning my body into mulch or something else. But I also realized I was willing to bend if a cheaper but still-green option was easier.
At the end of the dinner, just before everyone got up to leave, the restaurant’s owner tapped a glass to get our attention. There were two birthdays to celebrate, she told us. A chocolate cake was carried out from the kitchen and everyone began to sing “Happy Birthday.”
Ending a dinner about death with a birthday might make sense to a death-positive person: Most advocates will tell you that life and death aren’t so far apart. Spade put it simply, saying she believes “that humans are part of nature, even if they’re destroying it.”
We go back to where we came from. All bodies decompose. Green burials — and the acceptance that comes with them — simply reinforce that whatever is left of us eventually gives life to something else. If that’s what I choose, I’ll be giving life long after my dying breath.
At a death cafe inside Bigelow Chapel at Mount Auburn Cemetery, people gather to enjoy cake and tea while discussing death and mortality in a safe space.
By Olivia Deng
Before dying or almost dying, the conventional anecdote is that people see a flashback or a white light and have an out-of-body experience. But Barbara Olson, a retired social worker, saw darkness and Darth Vader as she started accepting her end. She had fallen out of a raft 20 years ago in Maine. “I kept having all these ‘Star Wars’ images of Darth Vader… Our guy on the raft [had] a ‘Star Wars’ name so that’s why I started thinking Darth Vader,” Olson said. “The other thing I kept thinking about is, I was with a man that I didn’t know that well … I was worried about my father and what he might think.”
These conversations arise at a death cafe, a gathering where people enjoy cake and tea while discussing death and mortality in a safe space. Death cafes can be held anywhere — a home, a coffee shop, and in this case, a cemetery. Inside the regal gothic revival-style Bigelow Chapel located on top of a hill at Mount Auburn Cemetery, a diverse gathering of strangers treated themselves to cupcakes and tea before settling down in chairs arranged in circles. Boxes of tissues lined the walls, should anyone need one.
Death cafes are modeled after 19th-century salons where people convened for intellectual discussions. Bernard Crettaz, a Swiss sociologist, introduced the idea of death cafes in 2004 and Jon Underwood popularized them, hosting the first death cafe in his London home. Soon enough, death cafes were embraced across the world.
Death, famously called the “great equalizer” by journalist Mitch Albom, obviously sparks curiosity and questions. But many repress asking those questions out of fear. The topic is perceived as taboo and difficult to confront, even though death surrounds us.
“One of the eternal questions that we, as humans, have is about the meaning of life and part of that discussion stems from what happens after life, which is death,” said Bree Harvey, vice president of cemetery and visitor services at Mount Auburn Cemetery. Death is a daunting subject to grapple with, but the growth of the death positive movement and death cafes bring conversations about death to a more nuanced, collective grappling.
Far from a grim consortium of goths, death cafes attract people from all ages and walks of life. In my discussion group alone, there was a nonprofit worker, scientist, mortuary school student, yoga teacher, hospice volunteer manager, retired social worker, and Mount Auburn Cemetery employee. For all but one, it was their first time attending a death cafe. Before beginning our discussion, we were told ground rules to foster a comfortable and respectful environment: listen, speak your truth, share the air, respect, accept and expect, and self-care.
Olson said she attended the death cafe because she couldn’t talk about death with people in her life. “If you go by statistics, I’m three-quarters through my life and very aware there’s an end. I’ve seen people very scared in their life at the end, and people who have not been actually. I do think sort of normalizing and talking about it is very normal.”
Cupcakes at the death cafe at Mount Auburn Cemetery.Tissues line a wall at a death cafe inside Bigelow Chapel at Mount Auburn Cemetery.
Talking about death could be increasingly common with climate change. The thought of a mass extinction lurking around the corner brings great anxiety and urgency to make the most of our lives. “To have to envision that happening in my near or far future is the scariest part for me,” said Michelle Frasca, a mortuary school student, at the death cafe. Because of climate change, Frasca said she would rather not be immortal if given the choice. “I’m so much of a pessimist that I’m like, it’s going to be terrible, I’m going to have to watch people die, I’m going to have to watch the world die.”
Corinne Elicone, events and outreach coordinator at Mount Auburn Cemetery, may only be 25, but she’s already bought a plot at Mount Auburn Cemetery. Elicone had an experience where medical professionals did not respect her grandfather’s end-of-life wishes. “He wanted no life support, he didn’t want to get food or liquids. He was in the resuscitating area to be revived. And I had to go into that hospital room and tell the nurses to unplug his fluids,” Elicone said at the death cafe. “It made me feel like there’s nothing I can do when it comes down to it, people are going to do their daily tasks.”
However, not everyone gets to make their end-of-life plans. Just like there’s inequity in life, inequity persists in death. “There’s no grand conversation on access to a good death. Who gets to die well in this country? People with money. They get comfort and they have care and they have shelter and they have music and soft linen. And people who don’t have money don’t really have options,” said Lashanna Williams, a death doula and executive director at A Sacred Passing.
Death grounds and humbles us, in addition to helping us prioritize our lives, said Eric Redard, a hospice volunteer manager, at the death cafe. Daily life is filled to the brim with pressures: You work until you die and along the way, fear failure and inability to fulfill your dreams. Is contentment all we can ask for?
Olson, who recently moved to a new home, said that she felt a newfound peace that isn’t quite happiness, but it is enough. “I could just sit on the back porch and listen to the crickets all night. I don’t feel like I need to do anything … I started thinking, if I should die anytime between now and the next 20 years, which is quite likely to happen, I want to feel this way.”
The leaves are green and awaiting to burst into shades of gold, orange and red, but in a couple months, they will fall to the ground and decay. Like fall, a season that brings both renewal and decay, death is full of dualities: denial and acceptance, mourning and comfort, and loss and living with intention. Death cafes show us we don’t have to reckon with it alone.
The booming hospice industry is changing what it looks like to die in the U.S. Rather than under the care of doctors and nurses in a hospital, more Americans than not now spend their final days in familiar surroundings, often at home, being cared for by loved ones.
While hospice has been a beautiful experience during a difficult time for many families, a yearlong reporting project by WPLN finds end-of-life support often falls short of what they need.
“Our long-term care system in this country is really using family, unpaid family members. That’s our situation,” says professor Katherine Ornstein, who studies the last year of life at Mount Sinai Hospital in New York. “As we increasingly see that we want to provide home-based care, we’re relying even more on caregivers. And it does take a toll.”
The federal government has found that families often misunderstand what they’re entitled to when they elect hospice. And many still have to pay out of pocket for nursing home services or private caregivers, which Medicare rarely covers — all while the hospice agency is paid nearly $200 a day.
Hospice has catapulted from a sector led by nonprofits and volunteers to one dominated by investor-owned companies — including several based in the Nashville area such as Amedysis and Compassus — with more growth expected.
In the process, hospice has ballooned into a nearly $19 billion industry. It’s now the most profitable service sector in health care, as the industry’s business model relies heavily on unpaid family caregivers.
“This seems like it’s in sync with patient-centered care,” says Ornstein, “but the reality of that situation may be very, very challenging.
“I think we have a responsibility to really think about whether the families can handle this.”
‘A Longer-Term Thing’
The Fortners could be the poster family for hospice of old. On an overcast morning last May, they gathered with dozens of other grieving families at Alive Hospice’s residence in Murfreesboro for the nonprofit agency’s annual butterfly release.
McCoy Fortner, 8, opened a triangular box and a dormant monarch began to twitch.
“You can also whisper to it to tell the person in heaven what you want to say,” he explained.
He held the winged messenger on his forefinger until the black and orange wings perked up and stretched out. He relayed a few words to his father, Jeremy, who died two years ago of cancer.
“Thank you for being my best dad,” he said as the monarch took flight.
McCoy’s mom, Elicia, stood behind her son with tears in her eyes. Her husband called off endless chemotherapy. He was on hospice at home and then moved to a residential hospice facility where he passed away. Between the two, he was on hospice for 10 days.
Elicia Fortner said she just wishes they had stopped curative treatment and switched to hospice sooner.
“I don’t know if I really understood the options,” she said. “I didn’t realize hospice could be a longer-term thing.”
The Hospice Nudge
The average amount of time patients spend on hospice has been creeping up steadily, amid an industry-wide push that has aligned most of the interests in health care. The Affordable Care Act gave hospitals new incentives to reduce the number of deaths that occur in the hospital or shortly after a patient’s stay. Some studies suggest that’s caused an uptick in hospice use. And many doctors have been sold on the idea of prioritizing quality of life in the final days.
More patients are also eligible: Hospice has expanded beyond cancer to any terminal illness.
Very few people now die in a hospice facility. More often, hospice is received at home or, increasingly, in a nursing home.
Jessica Zitter, an emergency physician in Oakland, Calif., wrote a book about needlessly dying in the hospital on ventilators with very little consideration about quality of life. She advocates for prioritizing comfort care, which often means recommending hospice. When a patient has been told they have less than six months to live, Medicare and most private insurance will allow them to sign up for hospice services meant primarily to help them die in peace.
Zitter filmed one documentary called “Extremis.” It showed the impossible end-of-life decisions that have to be made in a hospital.
Then, she decided to make a second documentary, still in production, following a husband who took his wife home on hospice after ending cancer treatment.
Zitter met with Rick Tash and Bambi Fass for the nine weeks she spent in at-home hospice. The storyline didn’t play out as expected.
“It made me realize how naïve I — the doctor of death — was,” Zitter says. “This is this beautiful love story of these two people. Then you hear him say, ‘I didn’t sign up for this.’”
Tash became overwhelmed — from managing Fass’s morphine doses to getting her to the toilet every few hours.
With at-home hospice, everyday caretaking — and even many tasks that would be handled by professionals in a hospital or nursing home — are left to the family.
Medicare requires agencies to provide a few baths and a nurse check-in each week. But government data reveals that, on average, a nurse or aide is there at the house only about half an hour a day.
Zitter sat Tash down at his kitchen table, with his granddaughter on his lap. She encouraged calling in reinforcements.
“Asking for more support from hospice, if you need it, is really important,” she told him.
“Yeah, but what they offered me was a volunteer for two hours, one day a week,” Tash responded.
“That’s it?” Zitter asked.
“That’s what they offered,” Tash said.
Zitter was stunned. She realized Rick was getting all hospice had to provide, and it wasn’t nearly enough.
“The good death isn’t as easy as you might think,” she says. “We’ve got to put some things in place here so we can make it more likely that people can achieve that.”
When her husband got sick with kidney cancer and died four months later, Jane Whitlock, having had no experience with death or grief, found that the guidance and spiritual care provided by hospice just wasn’t enough. Resolving to find her own purpose while answering for the gaps she saw in end-of-life care, she followed her intuition and became a death doula.
A death doula, or end-of-life doula, is someone trained to provide holistic care to a dying individual. There is no nationally standardized certification program, which means there are multiple training options—a process that involves a set of training classes and documented hours of direct client support, plus whatever specific assessments a particular certification program requires. Death doulas represent a growing movement toward redefining our typical approaches to death.
A death doula’s role is as nuanced as each individual who occupies that role, and Jane Whitlock sees herself first as a companion. She provides comfort and support to the dying individual and their “tribe”—as she often refers to the circle of family and friends—through a time for which most people may not be spiritually prepared. Through intentional connection, she deciphers how she and the tribe can best serve the dying person. She abides by the slogan, “Death: it’s a collaborative event!”
This Q&A has been edited for clarity and length.
The Growler: Why do you believe death doulas are important?
Jane Whitlock: A doula helps ask the big questions so this process is as spiritually comforting as it can be. Think of your deathbed and how you want to feel—at peace, right? So, how do you get there?
A doula also gives you some sense of what’s coming and can support you through these tough situations that you may not be prepared for. You haven’t been here before and often don’t have any bank of knowledge to draw from.
Cultures have evolved to include how we care for people who are dying and have died, and while some intact cultures can trace their beliefs back very far (to the Buddha, for example), Americans don’t have those deep ties.
Since the Civil War, the standardization of funeral homes, embalming, and the medicalization of end-of-life have removed death from the home. We no longer know how to care for people who are dying, how to have home vigils, how to mark significant transition points (leaving a body for the last time, a body leaving the house).
How can our modern standardized systems shift to accommodate what death doulas have to offer?
It would be amazing if hospitals employed doulas! Wouldn’t it be great if you could transfer someone who has died to a room to clean them up, bring the family in, and have someone guide them through rituals of saying goodbye and nurturing the body?
I think a lot of times this seems like a white lady movement—like, we want to cover everything in crystals and candles and aromatherapy or whatever. I push pack against that because there are so many other ways of experiencing death. This movement needs to be more inclusive, to change a whole bunch; being a death doula is a teeny, tiny door, and there is a lot of growth ahead.
What characteristics make an effective death doula?
You have to be able to empty yourself out, to be hollow and free of judgment, of any preconceived ideas about what should be happening. You have to listen without thinking and really be with someone when they’re suffering without trying to fix it. An effective death doula is someone who is calm, quiet, and vulnerable. It’s really so much about vulnerability.
I volunteer at a hospice and often have to practice that whole “soft belly” thing, to stop before every room and become wide open. Even when someone doesn’t want to see you, you have to think, “It’s not about me.” You just kind of clear your energy, go into the next door. You have to fight being defensive in order to just be vulnerable.
What are some ways to go about changing our death culture?
It really starts with your stories. We don’t tell our death stories; we tell our birth stories and our family stories, but we don’t tell our death stories. It would be great to just listen to a bunch of stories about how it happens, maybe know just some weird and messy stuff, too. What was it like? What would you have done differently? What went well? What surprised you?
There’s this guy, Dr. Allan Kellehear, who says our inability to talk about death is a public health epidemic. He refers to the AIDS epidemic and how you couldn’t shut a bathroom stall without a poster on the back teaching about prevention and safety. Wouldn’t it be great if we took that type of vast approach to shifting death culture?
Another maverick in the field, Suzanne O’Brien of Doulagivers, says there should be someone on every block who knows the end-of-life basics so that when somebody in your community is dying, they are supported.
Who do you think is the best at approaching death?
Well, the Buddhists, hands down. They’ve got the saying: “We are of the nature to get old; we are of the nature to suffer; we are of the nature to die.” Imagine if that’s how we started every morning—we wouldn’t be so shocked by death! There are people who think that aging is some kind of radical punishment or who feel entitled to live in a full healthy body forever. That’s just not our nature.
I would say that to prepare for death, you have to get your spiritual house in order, whatever that means to you. Life is finite, super fragile, and you are not entitled to anything! So, spend your time wisely and be grateful.
