But we learn early on that despite the fact our lives are universally finite, most people don’t want to talk about it.
We’ll talk sex, we’ll talk drugs, we’ll even talk money—but not death.
That could be changing with the proliferation of so-called Death Cafes, informal get-togethers in cities across America, Europe and Asia, where people eat a little something, drink some coffee maybe and talk about, well, the inevitable.
The mission is to revamp typically depressing and urgent end-of-life discussions to more leisurely “Everything-I-Wanted-To-Know-About-Death-But-Was-Afraid-To-Ask.”
The conversation ranges, and depends on the group of people who’ve gathered: anything from how much a funeral costs to the details of a “green” funeral (think: corpse as compost) to tips on how to talk to your family members about your own funeral.
There’s a range of people who attend, too, from someone who had a death in the family and wants to be better prepared next time, to health care providers who want a different perspective on dealing with death. They range in age from 20-somethings to 90-somethings.
The object: to turn death from a feared end to something that is part of life.
“Death Cafés change the way you live in the most profound and wonderful way,” says Kim Mooney, 67, who runs monthly meetings in Longmont, Colorado.
Mooney even held a few events in a mortuary. “I like to say it’s the only time you will walk in and walk out of one, so you might as well take advantage of it.”
Death café hosts tend to have a sense of humor.
Death on twitter
If you want to confirm the popularity of the death positive movement, just go on social media. There’s The Death Café Facebook group, which lists times and dates of meeting and has more than 50,000 likes and followers.
Advocates say the meetings allow people a low-pressure way to express fears about the Great Unknown; to chat about the way other cultures handle death; and to share practical information, such as learning the nuts and bolts of filling out end-of-life forms.
Talking with strangers, hosts say, is often an easier way to broach the topic before launching a conversation about death with loved ones.
Lizzy Miles is a hospice social worker who hosted America’s first café in 2012 in Westerville, Ohio. She baked cookies in the shape of tombstones with grey icing and “Death Café” where the epitaph normally goes.
She is one of more than a 100 Death Café hosts in this country. She’s still hosting—and still making treats—for nearly a dozen people who show up each month.
“No one ever comes to a Death Café already uncomfortable talking about death,” she says. “If you are, you’re not going to come. We have a lot of sandwich generation people, who are taking care of their parents.”
Miles is so committed she even traveled to a Death Café in Hong Kong—“on my own dime!”—to see what it was like.
“It was amazing, people were speaking English and Mandarin and Cantonese,” she says. “And I thought ‘Oh my gosh, all these different languages. This is pretty cool but almost exactly the same.’”
Do: Allow a space for folks to share their ideas respectfully and openly.
Do: Offer the opportunity for everyone to speak but allow those who want to remain silent to do so.
Don’t: Charge an admission fee.
Don’t: Sell death-related products.
Don’t: Turn the group into grief support.
Miles and others believe that confronting our mortality will prompt us to the make the sorts of life changes that some folks do only when confronted with a fatal disease. Why wait?
Shellie Balogh, a 61-year-old hospice nurse attended one of Miles’ cafés in Ohio.
“It wasn’t what I expected; it was more upbeat,” she says. “It’s a fun thing to do if I have a free Saturday. You go and meet people you may never see again and just have this conversation, opening up this forbidden area of discussion.”
A midwife for dying
Suzanne O’Brien hosts a New York City group that meets at a public library on the Upper West side. She’s a nurse turned death doula.
Death doulas—part of this burgeoning “death-positive” movement—provide the same sort of bedside care, comfort and companionship that birth doulas offer to pregnant women but at the other end of the life cycle.
O’Brien said monthly conversations tend to fit into five buckets, sometimes all five covered in one 90-minute session:
The physical: How do I make sure I’m comfortable during my dying hours. What do I want to happen to my body?
The financial: What forms do I need to fill out? Or how much money do I want to spend on a funeral versus, say, end-of-life care?
The emotional: How do we deal with potential regrets or forgiveness?
The mental: Reasoning and acceptance
The spiritual: How do beliefs about death inform the way we live.
One woman wanted to know how to donate her body to a medical school anatomy class. She also wanted to make sure her family would not be given the leftovers when the students are done picking her apart, something she had heard can happen.
She told the group: “I’d rather just be flushed.”
Banishing the secrecy
The idea of a group of a random community members chatting about death over refreshments was the brainchild of Swiss sociologist Bernard Crettaz. He launched a “Café Mortel” in 2004 in the lakeside town of Neuchâtel, Switzerland. A dozen mortal members attended.
The point, as he once told a reporter for the Independent, a British newspaper, was to remove death talk from its “tyrannical secrecy.”
The first cafe outside of Switzerland was held by John Underwood, who hosted in his London basement in 2011. He’s given credit for helping the movement go global; he died last year, at the age of 44, from undiagnosed leukemia.
Today, there are death-with-food meetings in about 55 countries—including the U.K., Italy, Hong Kong, Finland, the Netherlands and New Zealand.
Becoming a regular
Those who are regulars say that while the subject matter is death, the meetings are not sad. Hosts emphasize that they are not grief support groups, more death-curious groups.
Jane Geller, a retired schoolteacher in New York City attends the Upper West Side meeting nearly every month.
“It’s a misnomer to think it’s depressing,” she said. “Death Cafés are really about life.”
Shatzi Weisberger, an 88-year-old retired nurse from New York City is a regular, too.
“I was always especially interested in how we come into this world and how we leave it. When I got into my eighties, I got personally interested for my own edification.”
Last fall, she hosted her own “FUN-eral” (pronounced Funn-eral) in the common room of her apartment building. More than 100 attendees came to the event. It sounded like a macrabe-themed birthday but she said it was a death, not a birth, party. And a way to attend her own funeral.
She said she has planned her own green burial. “I’m going to be wrapped in a shroud and buried in the woods upstate and my body will deteriorate and something will grow. I don’t know if it will be grass or flowers or a tree so I feel my dying is bringing life into the world. That’s not depressing at all.”
There are many things we want to talk about with family and friends; death isn’t usually one of them. But from Death Salons to Death Cafes and dinners, there are plenty of signs in Seattle that this is changing
BY: Jen Swanson
There are a couple of ways to kill a dinner conversation. First, discussion of politics, a truism that is magnified in our divisive modern age. Second, religion, although this doesn’t often come up on this side of the Cascades. Finally, death, though most people would never consider raising a subject so morbid. In terms of topics to avoid discussing over dinner—or ever—mortality ranks high on the list.
However, one local entrepreneur and author, Michael Hebb, considers such conventional thinking dead wrong. “It’s like the opposite end of the continuum of talking about the weather or of a cocktail conversation,” says Hebb, whose new book, Let’s Talk About Death (Over Dinner), describes death as the most important conversation we’re not having. Such silence bears serious repercussions, and not only in terms of missed opportunities to connect with your loved ones. The book identifies end-of-life hospital expenses as a leading factor in American bankruptcies, Medicare patients outspending their total assets, and the sad fact that 80 percent of Americans die in hospitals, despite most wanting to die at home.
To Hebb, whose deep interest in death-related discourse led friends to throw a living funeral for his 40th birthday, one problem is that modern Americans no longer make time to eat together. “Just like we’ve forgotten how to pickle and can and preserve, we’ve also forgotten how to come together around the dinner table and have meaningful conversations,” he says, ruing the loss of this important “cultural engine.” The book and its companion website , inspired by a course Hebb taught at the University of Washington, offer an easy, DIY format intended to help readers host their own death dinners, with personalized cues and prompts that have fostered 150,000–200,000 dinners worldwide since launching in 2012. “There hasn’t been a single Facebook, email or Twitter response indicating a dinner went badly, which tells me that people know how to have this conversation,” says Hebb. “Maybe they’ve had a forgettable experience, but no one having a bad experience tells me that we’ve tapped into a basic human need.”
Hebb isn’t the only local focusing on this topic. From Death Salons to the locally produced Speaking of Dying film and companion workshops, there is a quiet movement in the area that’s giving voice to this once taboo subject. “This is a great region that’s having an interesting undercurrent conversation,” says Taryn Lindhorst, Ph.D., LCSW, a Behar professor of integrated oncology and palliative care social work at the University of Washington, who cites the Pacific Northwest’s counterculture vibe, antiauthoritarian bent and focus on experimentation as some of the reasons why.
While Michael Hebb was restoring the lost art of breaking bread, the concept of discussing existential topics—like death—over tea and cake was gaining traction in England. The idea for Death Cafes was originally conceived in London in 2011, but quickly spread across the pond to North America and particularly to Seattle, where Death Cafes have cropped up in libraries, mortuaries, houses and actual cafés.
“It’s a safe place to talk about death,” says Karuna Duval, an ordained interfaith minister, hospice chaplain, certified death doula and one of many volunteer facilitators hosting Death Cafes in and around the city.
Duval has hosted Death Cafes in Washington and California, where she used to live, and estimates 7,200 Death Cafes have now taken place in 52 countries worldwide. “I just found it so fascinating because of the experience of so many people,” says Duval of attending her first Death Cafe in 2012 in California, following the deaths of her father, grandmother, partner and first husband. Such open discourse hadn’t been evident 10 years before, when Duval, inspired by a book titled Talking About Death Won’t Kill You, tried to organize her own workshops to foster end-of-life discussions and planning. The response then was lukewarm, but a decade later, the temperature had changed. “It felt like a relief,” says Duval, who was seeking to process all the loss in her life. “It was like, oh my gosh, I can finally be around people who aren’t like wigged out or weird talking about this stuff.”
There are all sorts of reasons why people don’t talk about death: A desire not to sound overly morbid. Fear of the unknown. A remove from death that has happened because so many people now die in hospitals, not at home. The superstitious notion that talking about death might hasten the event. The “go, fight, win” mode often prompted by serious illness. “In fact, the opposite is true,” says Hebb, describing how our cultural programming can work against us. “If somebody has a terminal diagnosis, having end-of-life conversations will extend their life. And that’s clinically proven.”
Our underlying “death anxiety” was the key focus of the late scholar, author and roving professor Ernest Becker, whose seminal book, The Denial of Death, won the Pulitzer Prize in 1974. “Ernest Becker was a cultural anthropologist who developed theories about how the uniquely human awareness of our mortality impacts our behavior,” explains Deborah Jacobs, executive director of the Seattle-based Ernest Becker Foundation, which was founded by a retired physician in 1993.
“I would posit that the death-positive movement is founded on Ernest Becker’s thinking,” says Jacobs of the growing swell of Death Cafes, death dinners and other efforts in recent years to reclaim the ways in which we talk and think about death, actions that echo the foundation’s longstanding efforts to bring our underlying awareness of death to the forefront.
To Becker, who saw death anxiety as a key driver in everything from religion and culture to our choices of partners and jobs, knowledge of our inevitable passing also drives each person to embark on an “immortality project,” or a quest to fill our lives with meaning. “Meaning has to last beyond our demise, our physical demise, so it could be making children, writing books, being good at your job, being a war hero, being a terrorist,” says Jacobs, noting Becker’s diverse appeal.
Trudy James, a retired hospital chaplain, also sees Becker’s theories at play in our current health care system. “The medical system became part of what was already the underlying denial of death,” says James, describing a system in which doctors don’t talk to their patients about death or dying. This marks a departure from James’ early career, which stems from the 1980s AIDS crisis, when patients knew they were going to die, openly discussed it and ultimately died more peacefully. “We live in this fantastic medical environment where we’re the beneficiaries of fabulous health care and have all these new procedures and new clinical trials and new treatments and new medications,” she says. “It’s caused people to believe they can live forever.”
James’ solution was to create a four-part series of end-of-life workshops and a documentary film, Speaking of Dying, which follows patients, families and medical professionals through various end-of-life options, including Washington state’s “Death with Dignity” law. Screened at churches, senior homes and other venues in Seattle since debuting at the Frye Art Museum in 2015, the film always draws attendees, including doctors and hospital chaplains who’ve never discussed death with their own families, says James, describing the documentary as an instant conversation starter. Meanwhile, the workshops, offered since 2008 through James’ company, Heartwork, offer participants a safe, intimate space to share stories, address questions and fears, complete advance directives and get familiar with hospice/medical procedures, such as CPR, which rarely works out in real life like it does in the movies. Doing this “real work of dying,” as James calls it, allows people to spend their final moments in peace with their family.
Death Doulas These coaches help ease the end of lifeAs more people decide to die at home, death doulas, also known as end-of-life doulas or death midwives, guide patients and their families through the end-of-life process in a way similar to how regular midwives would assist with home births. Death doulas play various roles, from offering patients comfort and companionship in their final days to supporting the family by performing basic caregiving tasks, assisting with funeral planning and helping loved ones grieve. “It’s not to replace any of the components of hospice,” says Karuna Duval, a hospice chaplain who is also a death doula, of the two programs’ complementary functions. The International End of Life Doula Association (INELDA), founded in 2015, is just one of many organizations offering training and accreditation to anyone interested in joining this budding movement.
“If you haven’t had these conversations by the time you get to the hospital, the hospital is a terrible, terrible place to have them,” says Lindhorst, the UW professor, noting the ease with which hospitals can overwhelm patients who haven’t considered their options beforehand.
“It’s kind of like a conveyer belt,” says Lindhorst, describing a medical system whose default status is always set to treatment. “Once you step on it” and start down that path, “then treatment implies the next thing, implies the next thing, implies the next thing,” she says, noting how easily people can get moved through the system, in part because doctors don’t often have more than 15 minutes to explain various options. “It’s not anybody’s fault per se, but the system is so strong in this,” says Lindhorst, who saw early on in her career, which was also rooted in the HIV/AIDS epidemic, that the onus is on patients to be knowledgeable and empowered.
The medical community could learn something from Elizabeth Coplan, a playwright who four years ago was struggling to cope with the death of a cousin, a freak accident that claimed a loved one and octogenarian in-laws so fearful of dying they refused to entertain any end-of-life discussions. “Some people write in journals,” the theater veteran remembers of her efforts to process the situation. “I’m going to write about my cousin’s death as a play.”
That exercise resulted in The Grief Dialogues, a series of short plays structured like The Vagina Monologues, but with actors exploring scenarios centered on grief, death and dying. The 90-minute production, which invites a grief counselor on stage to lead an audience Q&A after every show, immediately resonated with people, says Coplan, who credits the play’s passive, third-party presentation as a safe way to broach a taboo topic. “By sharing my stories that way, which you could just take as strictly theatrical or you could take it as entertainment,” people finally started to open up, she says. “Suddenly, people who were afraid to talk about death in general, or their own experiences with grief, all of a sudden wanted to share their stories.”
It was while applying for grants for her production that Coplan came across The Order of the Good Death, a Los Angeles–based group of funeral-industry insiders, academics and artists seeking to promote a culture of “death positivity.” She was especially taken by the group’s Death Salon, a weekend conference on mortality styled in the vein of an 18th-century gathering of intellectuals, so much so that she volunteered to bring the event to Seattle. “It was kind of like a Comic-Con for death,” says Coplan, recalling the Victorian-style hairstyles, makeup and dress on display during the sold-out affair, which took place early in September 2017, in partnership with the UW School of Social Work.
The event marked an important turning point for Seattle’s death community by uniting the diverse leaders of a fragmented movement that had so far existed on the relative fringe. Presentations were delivered by Chanel Reynolds, whose husband’s untimely death led her to found GYST (Get Your Shit Together), a website introducing others to the easily avoided world of wills and life insurance. Other presentations included a Death with Dignity panel moderated by Sally McLaughlin, executive director of End of Life Washington; an introduction to green burials; a film about Death Cafes; and an exploration of postmortem pet options with Caitlin Doughty, the 34-year-old mortician who founded The Order of the Good Death in 2011. Lindhorst, the UW professor, explained the natural signs and symptoms of approaching death, knowledge that’s becoming increasingly rare as fewer people die at home. Nora Menkin, executive director of The Co-op Funeral Home of People’s Memorial—the country’s oldest and largest funeral cooperative and also a Death Salon cosponsor—examined alternative death care. Katrina Spade, the founder of Recompose, described her pioneering efforts to transform human remains into soil. On the first night, The Grief Dialogues debuted to a full house at the UW’s Ethnic Cultural Theatre.
“People who are into this, they’re hungry for it,” says Jacobs of the Ernest Becker Foundation, describing the Death Salon as a “critical community builder,” which has a mission similar to the foundation’s of providing “a home” for like-minded seekers. Along with cosponsoring the event—and participating in Death Salons in Philadelphia and Boston—the foundation facilitated a lunchtime dialogue, allowing guests to break from the conference format and engage in a round-table discussion about death.
The success of the Death Salon conference is one indication of our region’s relative death positivity, which could be attributed to the sheer number of innovators working in this space. “The good-death movement, or the death-positivity movement, used to be defined by a couple of individuals,” says Hebb. “Now, there’s a huge community of thought leaders, practitioners and enthusiasts, so that’s the big change,” he says. “It’s a very multidisciplinary community of people considering these issues,” he says, pointing to the mix of artists, entrepreneurs, doctors and “blue-chip establishment folks,” like Cambia, an organization that runs an entire center devoted to palliative care at the University of Washington, feeding Seattle’s “unique influence and impact.”
Such attitudes could also be influenced by our diversity, speculates Lindhorst, who points to our large Asian population as an example. Religions originating in Asia, she says, “have a very different kind of orientation towards death,” contrasting the Christian biblical literalist interpretation of death with Buddhist movements flourishing on the similarly progressive West Coast. “In many Asian cultures, that idea of integrating daily thinking about death is actually part of the spiritual condition as opposed to the dominant avoidance that we have here in the United States.” Social media, which makes it easier than ever to find and share information, also factors into the death-positive movement’s recent swell.
“I think more of us are talking about death and grief in a very open way,” says Coplan, describing today’s conversations about death as less a “macabre, voyeur” issue and more of an academic one, even if society still has some way to go. “I actually give the millennials a lot of credit for this kind of chipping away of the stigma around talking about death,” says Coplan, who has two millennial sons and meets plenty more at her shows. “They are incredulous that their parents are getting so worked up and don’t want to talk about death,” she says, describing the younger generation’s lack of fear regarding what they know to be a natural eventuality. “We talk about sex, we talk about drugs, why don’t we talk about death?”
Why Talk About Death?
There are lots of good reasons to talk about death, and not only because such discussion helps us prepare for the inevitable. Completing your advance directive, a set of legal documents that detail your last wishes, and communicating its contents and location to loved ones clarifies your thoughts on life support and other medical interventions. (Advance directive forms are available from your physician or most health care organizations.)
Sharing your post-life wishes up front removes any guesswork involving the funeral, which, pending legislation scheduled for the upcoming January session in Olympia, could soon extend beyond the standard burial and cremation options to include alkaline hydrolysis, a water-based cremation also known as “aquamation,” and recomposition, a natural process that converts human remains into soil. Communicating the contents of your will and choosing an executor of your estate helps avoid surprises and legal pushback. Moreover, having these conversations beforehand alleviates stress on your loved ones, allowing them to avoid making difficult decisions under pressure and simply focus on their grief.
“The people who have had the conversation and at least know what the deceased person wanted, if they got a chance to talk about what was important to them, they’re much more confident in making the decisions and going through the process,” says Nora Menkin, executive director of People’s Memorial Association and The Co-op Funeral Home on Capitol Hill. “The people that tend to have the hardest times are ones that didn’t have any conversation, therefore there was absolutely no preparation for it,” says Menkin, whose organization, in addition to regular end-of-life planning workshops, furnishes each of its 70,000-plus members with end-of-life planning documents that double as excellent conversation starters. “We also want to make sure it starts the conversation with the family, because it does the family absolutely no good for Mom to say, ‘Oh, it’s all taken care of,’ but not tell them what she wanted.”
A Few Tips for Getting the Conversation Started
It’s never been easier to instigate conversations about death, at least if you have a copy of Michael Hebb’s new book, Let’s Talk About Death (Over Dinner). The book builds a solid case for why the dinner table is actually the perfect place to discuss death and dying followed by ideas and tips—including what to eat, whom to toast, and a menu of conversation starters—for hosting your own death dinner at home.
Prompts include, but aren’t limited to, the following thought-provoking questions:
• If you had only 30 days left to live, how would you spend it?
• What is the most significant end-of-life experience of which you’ve been a part?
• Do you believe in the afterlife?
• Would you ever consider doctor-assisted suicide?
• If you were to design your own funeral or memorial, what would it look like?
• What song would you want played at your funeral? Who would sing it?
• What does a good death look like?
“It’s like a board game,” says Hebb of the death dinner series’ easily replicated structure, which is also available online. “The only thing we don’t provide is the food.”
“The human brain learns from stories,” says Traverse City birth and death doula, Krista Cain. As she sits with a mug of hot herbal tea at Cuppa Joe in the Village at Grand Traverse Commons, she explains her own story and the not-so-strange duality of her business, Sweetwater Doula, this way: Everyone experiences birth and death. Whether you’re experiencing them directly or through someone close to you, they’re an inevitability. They’re both also mammoth experiences marked by extreme emotion, hospital visits, and ceremony. Each of these experiences, she says, is a wave that smacks our bodies and minds repeatedly back down into the fray. Each is exhausting. But, she asks, “Why not ride [that experience] and let it take you in the direction you want to go? I want my teaching to be a surfboard.”
A doula is not a medical practitioner. A person working as a doula is not a doctor or a midwife; he or, more commonly, she is a guide.
Doula is a Greek word that was appropriated in the ’80s to describe a female assistant,” says Cain, but the definition has since expanded to describe someone who helps others during intimate emotional and physical events. Becoming a doula isn’t something with a hard start or stop, like a medical degree or a teacher certification. It’s common life experiences. “Walking people through life is a softer line,” she says.
Cain’s own line toward becoming a doula wasn’t a direct one. She originally hails from Southern California. She has a background in education and worked as a high school math teacher before coming to Michigan. But when she and her husband, who grew up in Traverse City, moved to northern Michigan in 2011, Cain, who was pregnant at the time, had a jarring resolution: “I’m not here to teach math. I’m here to teach people.”
Her transition into teaching about birth and death began with a certification in the Lamaze technique, which she still teaches alongside her workshops in birth and death. As she taught, she began to see that there were some holes in her personal experience with birth: She had never attended a birth other than her own. Her training as a birth doula began from a desire to offer even deeper knowledge and empathy to her clients.
Likewise, another life experience led her to expand her business to include not only guidance in birth but also in death. In particular, experiencing the death of her young goddaughter showed her how helpful it is to approach death in whatever way makes most sense to the person experiencing it. Death is certain, yet always feels unexpected.
Cain began training as— what she calls — a “death doula” in 2016, with an organization based in California called Bridging Transitions. The mother of one of its founders lived on the Leelanau Peninsula before she passed away in 2016. Cain was able to participate and assist the family during this time. She learned about both the scientific and social nature of death and dying.
Funeral Director and owner of Life Story Funeral Home, Vaughn Seavolt, worked directly with Cain during the funeral for a family who wanted to participate in all aspects of their father’s death. He said he sees a lot of value for both the person passing and the loved ones left behind.
“Having a death doula participate made it very meaningful for the family,” says Seavolt, “I think that it’s very rewarding and very healthy for families who want to participate as much as they want to.”
Cain says birth and death are extremely social experiences, and a doula helps with the social needs and pressures surrounding these major life transitions.
“A doula is a person who is skilled to walk beside you — your family, your partner — to meet your needs as you go through these changes,” says Cain. She will help you and your family in whatever way you need, from deciding what sort of service you want (do you even want a service?) to finding a place in the refrigerator for all the casseroles you’ve received.
“It’s not all about green burials,” says Cain. “You can do this with a body preserved in formaldehyde. You can do this with someone who’s been cremated.” On her website, Cain talks about how the ceremony surrounding the death of a loved one can be exactly what you make of it. It can take place at a funeral home, the hospital, a loved one’s home — whatever makes most sense for your situation. It can have as much or as little religion as is right for you and your family and friends. “There are religious traditions that guide the day, and there are ways you can walk alongside those traditions to serve the needs of the people who are carrying them out,” says Cain.
Most importantly, she provides both information and validation for your personal choices. In birthing and dying, what is right for one person might not be right for another, and that’s OK, Cain says.
Explains on of Cain’s birth clients: “It is also refreshing to hear people talk openly and without judgment about ‘taboo’ topics like postpartum depression and mental health counseling, miscarriage and infertility.”
Cain is adamant about empowering her clients through education. “We have a right to know about this stuff,” she says, “[both the] transformative experience of it and the nuts and bolts.”
A quick internet search reveals that end-of-life doulas are on the rise. There are lots of names for it: “end-of-life transition guide” or even “midwife of the veil,” but Cain prefers to keep things simple and bypass the poetry.
“Right now I straight up say ‘Death Doula.’ The reason I say that is because it’s really reallyclear. I don’t want to have to be that blunt, but we’ve done such a good job at covering it up.”
She’s working to uncover these topics, though she recognizes that it takes a fair amount of bravery to approach them openly. Cain often hosts workshops in both life and death. Who are they for? “Anyone with a life span!” she says, laughing. “If you’ve got a life span, you might at some point want to consider thinking about these things.”
Matters of Life and Death
Want to learn more about Cain, her services, or upcoming workshops? Check out www.sweetwaterdoula.com.
With continual advances in modern medicine, we’re enjoying longer lives. As the population ages, and particularly as many people are living longer with cancers and chronic diseases, end-of-life care is adapting and changing.
People who are approaching the end of their lives will usually spend some or most of their time at home, requiring care and support to do so. Family members might not always be available to provide this care. When they are, the process can be rewarding, but it can also be challenging and complex, often leading to a severe emotional burden for the carer.
Gaps in our health and social care systems are starting to be filled by death doulas. But beyond providing practical support, families are increasingly seeking the services of death doulas to help navigate the experience of dying. Those nearing the end of their lives, too, may bring in a death doula to ensure they can die the way they want to.
We urgently need a conversation about death doulas and new models of care at the end of life. We are continuing to build an evidence base through research with the death doula community and via consultation with the health services that interface with death doulas.
Defining the death doula
We’ve seen a similar concept in midwifery, where birth doulas have long been providing social, emotional and practical support to help women through the process of childbirth. This has been shown to have positive outcomes for mothers and their babies.
Like birth doulas, death doulas’ roles and functions are non-medical; these can include advocating, supporting (spiritually and sometimes physically), guiding, and providing emotional support to the person and their family, mainly in the home.
We undertook a systematic review of the literature to find available evidence about the death doula role. We found little formal academic literature describing the role, their training, or contribution to individuals, families and the health system.
But what we do know is that each death doula enacts the role differently. They might spend time with the dying person, offering emotional and spiritual support, and sometimes providing physical care. They might support the family carers in the work they are doing. Some death doulas are only present in the last days of life, offering “vigiling” – sitting with the dying person so they are not alone.
Some doulas offer after-death rituals such as helping families prepare the body or keeping the deceased at home.
Some death doulas are paid by families who engage their services. Families have often found their chosen doula online or through word-of-mouth. Other death doulas work voluntarily, in a similar way to a hospice volunteer. But, because there are no formal structures or registers, we don’t know how many death doulas there are.
In Australia and elsewhere, palliative care nurses, social workers and those from the funeral industry work as death doulas. This seems to be a natural progression, but it’s a grey area: doulas are providing care, but are not registered or supervised.
There is little formal assessment to guide patient and family choice or to inform end-of-life care provided by professionals.
How can doula care be formalised?
Providing care in homes can be informal. It may be provided by families, friends, or community groups. Care can also be formally negotiated and provided by health services, aged care providers or private agencies.
It’s necessary to understand the implications of the death doula role. For example, they could become part of formal care arrangements such as home care packages or via private health insurance funding.
We also need to look at how these new roles are authorised to represent the dying person, as they are neither a family member nor a qualified health professional. It’s also important that they are appropriately trained and insured (if providing paid services).
There are personal, social and cost advantages in enabling care in the home for a dying person. For families, being able to support the person in a familiar environment can be a powerful motivator to engage a death doula to fill the gaps in care provision.
For the health system, care in the home is seen as positive. It can avoid unnecessary hospital use and help spread the costs of caring.
For the dying person who may prefer to die at home, it is a way of achieving this. Importantly, death doulas can improve the dying person’s ability to control their own care.
The death doula role may well incorporate some of the direct care provided by families and help them to navigate the complex needs and planning required at the end of life. If so, death doulas could represent an important opportunity to improve dying outcomes.
We need to ensure our community is informed, health service provision crosses both hospitals and homes, and that those providing care – regardless of setting – have skills and knowledge appropriate to their role.
B.C. College of Midwives and Pashta MaryMoon, 65, to litigate ‘death midwife’ title this week
By Liam Britten
In a sworn affidavit, Pashta MaryMoon says her passion for alternative holistic death care began when she was a seven-year-old girl watching a 1950s western movie.
She described watching a scene with a pioneer’s wife whose husband had died. The fictional woman, all alone, had no choice but to care for his body herself, prepare it for burial, inter it and then comfort their grieving children.
“Young as I was, and with the benefit of hindsight, this ‘hands-on’ approach struck me as making more sense than conventional funeral practices,” MaryMoon, now 65, wrote.
“I am a Death Midwife; Death Midwifery is my vocation and it is what I do.”
The problem with MaryMoon’s vocation, in the eyes of the B.C. College of Midwives, is its name.
The college, which is the legal body regulating and overseeing the practice of midwifery in B.C., has sent several cease and desist letters to MaryMoon since 2016 demanding she stop using the term “midwife” to describe her services.
Now, it is turning to B.C. Supreme Court to compel her to drop it in a two-day hearing this week.
Cites history back to ancient Egypt
According to the college of midwives, its birth-focused registrants provide a “continuity of care and support throughout the childbearing experience.”
Before birth, they provide physical exams and diagnostic tests; during birth they can conduct normal vaginal deliveries; and they also provide postpartum care after birth.
MaryMoon says death midwifery honours the philosophy and tradition of traditional midwives as someone who “attends to birth or death.”
In a document submitted to the court, her friend Mia Shinbrot outlined the services MaryMoon provides.
Before death, she helps the dying plan at-home funerals and work through their grief; during the death itself, she organizes death vigils; and after the person has died, she takes care of paperwork, helps with the funeral and provides grief support.
MaryMoon, in her affidavit, said the dual role of a midwife stretches back into ancient times and claims its roots go as far back as recorded history, as evidenced by ancient Egyptian gods like Isis or the Bird-Headed Snake Goddess, which she claims have aspects of both life and death in their natures.
College wants to avoid confusion
In an affidavit of her own, college of midwives registrar Louise Aerts argued it is important to keep the term midwife legally reserved for college-certified midwives to avoid confusing or misleading members of the public.
Aerts declined to comment further for this story, saying the matter is before the courts, but in her submission, she noted that other holistic death practitioners call themselves “death doulas” or end-of-life doulas.”
Douglas College even has an End-of-Life Doula certificate program.
But MaryMoon, in response to that, said the term “death midwife” is the only title that accurately encapsulates her services and approach. She believes there is no chance of confusing her work with that of a college-certified midwife.
“When people hear ‘death midwife’ or ‘death midwifery,’ they automatically assume a philosophy about it, in part, because they’re familiar with birth midwives,” MaryMoon said.
“There’s no other term in our culture right now that that the public recognizes.”
She believes that without the title, people facing death will not know that they can take a different approach to dying.
She will ask the B.C. Supreme Court for an exemption to restrictions on the midwife title on Nov. 29 and 30.
Amanda Page Brown completed her training to become an end-of-life doula last November and now is trying to secure funding to work full time as a death doula in the area of Vancouver hit hardest by Canada’s overdose crisis
Last fall, Amanda Page Brown visited a friend in the hospital.
“As I was leaving, I saw their roommate laying in bed, skin and bones, and very little life in him,” she told the Straight. In a telephone interview, Brown explained that she recognized the man through her job as a support worker in Vancouver’s Downtown Eastside.
“He was completely alone and no one knew he was there, dying,” she continued. “I asked him if it would be okay if I visited again. He said yes.”
Brown sat with the man once more before he passed away a few days later. “I realized I was the only person who knew,” she said. “I was it.”
The experience affected Brown deeply. “He taught me much over those three final days,” she said. “He taught me the path I’m meant to walk.”
Brown learned that she wanted to help people in the Downtown Eastside make the transition from life to death. Especially those residents who might not have anyone else to be with them during that time. She began researching how she might be able to do that, and found a certificate course at Douglas College.
“End-of-Life Doulas are advocates for their clients and complement the work of the medical community and hospice-palliative care workers and volunteers,” the program’s website reads. “End-of-Life Doulas assist clients in creating and carrying out their health-care treatment decisions, as well as providing support to clients and their family and friends.”
Brown completed her training to become an end-of-life doula (also known as a death doula) last November. Now she’s trying to secure funding to work full time as a death doula in Vancouver’s Downtown Eastside.
Brown said that her plan is to collect support via her Facebook page and an accompanying fundraiser, but hopefully not for more than one year. Then, with a little experience under her belt (plus the previous seven years she’s spent employed in the Downtown Eastside), she’s hoping she can secure a staff position or reliable and sustainable funding from one or several of the many government agencies, private organizations, and nonprofits that operate in the neighbourhood.
“As a doula, you can walk in as a trusted friend. That’s what is needed here,” Brown said. “I want to be able to offer things like bedside vigils. If somebody is going to be taken off of life…and if that person doesn’t want to die alone, then somebody should be sitting with them.”
There are typical scenarios where it’s easy to understand why a death doula might be needed. For example, an elderly Downtown Eastside hotel tenant with an alcohol problem who doesn’t have any family. But Brown described other situations where it might be less obvious how someone could benefit from the presence of a death doula.
“I’ve asked drug users who have had quite a few overdoses, ‘Has anybody ever asked you if you are trying to kill yourself?'” she recounted. Brown said that with folks in that type of situation, she could befriend them and, once a bond is established, offer to help them draft an advance-care plan.
“Hey, I hear that your overdosing a lot,” Brown explained she could say to them. “Does anybody know your wishes in case something does happen to you?…Because we can do this on a legal piece of paper. Why don’t we do this?”
Brown added that these types of conversations can have unintended benefits.
“That might actually open up another conversation about maybe treatment or detox,” she said. “Maybe, maybe not. But it might be another way to open another very important conversation down here.”
Coco Culbertson is a senior programs manager with PHS Community Services Society (PHS), a nonprofit that manages more than a dozen supportive-housing buildings in Vancouver. She also happens to have the same end-of-life doula certificate that Brown has.
“There are volunteer networks that provide this service for free, but maybe not necessarily for the population that we support,” Culbertson told the Straight. “There are so many people in the Downtown Eastside who are living with a chronic illness and comorbidity and who become palliative or require some level of hospice. And there are very limited resources for those folks.
“Having someone who has the expertise and the empathy—professionalized empathy—to sit with them as they live out the last few days, weeks, or months of their life, would be an incredibly meaningful thing,” she said.
Culbertson noted that PHS staff often spend time with tenants who have been transferred to a hospital and are nearing the end of their life. But everyone is spread thin, especially since the dangerous synthetic-opioid fentanyl arrived and overdoses skyrocketed, she added.
“Someone who is able to provide more support for people who don’t have a family…that would be an incredibly important thing,” Culbertson said. ” I think it is just as important to offer dignity and humanity in death as it is in life.”
When a loved one dies, it is often medical staff, a hospice and an undertaker who deal with the final moments.
But families can now bring them back into the home, engaging an end-of-life doula to take care of the last wishes and arrangements for their loved ones.
Hilary Pepiette, a solicitor, is one of Scotland’s first end-of-life doulas.
She thinks there is a great need for her role as a “friend at the end”.
Hilary told BBC Radio Scotland’s Kaye Adams programme: “An end of life doula is someone who supports and walks alongside a dying person, the family and people close to that person, through the dying process, through the death and sometimes after that.
“The doula is your consistent flexible presence to fill in the gaps and give support emotionally, spiritually and practically in whatever way it is needed for each individual person and your family.”
Hilary believes we have handed over control to the professionals.
She said: “I have seen family members who have died and I think there is a feeling for me that I would love to do more and make sure that people can have the best possible death they can have, and to celebrate life.
“It is about making sure people live their life to the absolute fullest potential as long as they possibly can, and celebrate that, and then help them have the death that they want to have, give them come control over that.
“My mum died at home and while we did the best we could and it was a good death.”
Death is a taboo
But she added: “I wish I knew then what I do now about what was going on for her at that time.
“It’s only in the past 100 years or so that people have stopped caring for their dying family members at home and it all became about hospitals and the medical profession.
“Death has become a taboo and something that people have stopped talking about. But the more we are open about it the better. Being with someone and having those final conversations is so rewarding.”
As a solicitor in Edinburgh, Hilary processed wills and personal business. She decided to take her end-of-life services one step further.
She said: “It felt natural. I have been a private client solicitor for more than 20 years, and through that I have worked with a lot of people planning wills, powers of attorney and advanced medical directives to help them think about and plan for the end of their life.
“It seemed like a natural progression to me to take that one step further and think about what happens after the legal documents have been put in place.”
Hilary’s firm BTO, is the first to offer an end-of-life doula as part of its services.
What does an end-of-life doula do?
According to Hilary: “I do things from washing dishes or making their dinner or cutting someone’s nails or feeding them at the end of their life. Also providing the personal care that might be provided in a hospice.
“Also talking. There is a big role for conversation here where it can be really hard within a family to have the difficult conversations about what you want the very end of your life to be like, where do you want to be when you die, who do you want to be there. Do you want music playing?
“It is establishing what the biggest hopes and fears are. What are you most afraid of? Is it pain or losing control of autonomy, of making decisions. Having those conversations is a big part a doula can play.
“Some people are never comfortable talking about it. But most people who are given that opportunity and a safe place to do that are happy to do that and have those conversations.”
Someone who agrees with Hilary is Prof Dame Sue Black, forensic anthropologist and vice chancellor for engagement at Lancaster University, wants death to be celebrated more.
She told Kaye Adams: “It is an inevitability, it is going to happen. What we can’t control is how it happens.
“In the past that would have often been done by family. I think we have become scared of death, we don’t want to admit it exists.”
Prof Black thinks people have been conditioned to believe in a certain way of doing things.
She said: “People tend to accept there are rules we have to abide by but generally there aren’t. It’s important those left behind feel they have the autonomy to respect the person they have lost in a way that helps them with their grief.
“We think a funeral has to be very specific in that it has to have hymns and speaking, and it doesn’t. We need to have a confidence that those who are left behind have control over the celebration of the person who has been lost.”
She also thinks people should not be afraid of the last moments and to make the most of them.
She said: “I think we forget sometimes when patients are advancing towards the end of life that we think they are not listening and don’t communicate.
“There is some research that suggests the last sense to go may well be hearing so that’s the time we need to tell them how much we love them, how much we care, what a difference they’ve made.
“One of the last things we can do is communicate.”