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Ideas

You only die once – make the best of it

'Death doulas' and other ways to reclaim the end

By Erin Graham

After 20 years as an ICU nurse, Shelby Kirillin had witnessed her share of people’s last days and final moments, and she didn’t feel good about it. No matter how family dynamics played out in a given hospital room, the experience more often than not seemed cold and awkward. She noticed that families often dismissed patients’ attempts to talk about what was happening with well-meaning platitudes like  “winners never quit!” and “think positive.” But pretending not to see the elephant in the room only made patients feel more alone.

“Unfortunately, we don’t know how to die or how to be with the dying,” says Kirillin. “Most people find it unbearable, so they chat about work or what’s on sale at Target.”

Kirillin wanted to improve end-of-life care and considered becoming a hospice nurse. But then she came across the International End of Life Doula Association (INELDA), which offers training to provide ultra-personalized practical and emotional care for the dying.

It turns out that people have just as many opinions about how they want to leave life as they do about how to live it.

Conventional doulas are non-medical birth companions; the idea of applying that tradition of care to death resonated with Kirillin. “You labor into life, you labor out of life, and both can be beautiful, sacred times,” she says. Now, as a certified end-of-life doula at her private practice, Peaceful Passings, she works with clients to bring more consciousness to their last experiences and helps create an exit plan that works for them.

Death doulas like Kirillin are part of a broader movement to lessen the stigma around death — and help clients take control of the end of their lives. It’s Death and Dying, 2.0: More choice, less fear. And it turns out that people have just as many opinions about how they want to leave life as they do about how to live it.

‘End it how you see fit’

Most people who hire Kirillin are mid-lifers with terminal illnesses who know their trajectory has been set, and want autonomy over their last few months. She spends little time on logistics like advanced directives and computer passwords, in order to delve right into the heart of it. She conducts a “life review” and asks how clients want to write the last chapter of their lives. Together, they get specific and iron out details like, “What do you want the space to look like? Will you want massage? What rituals do you want your family to do right after you’re gone?”

“I tell them that it’s their job to write it — not their spouse’s or their child’s. End it how you see fit,” she says. Then, when a client can’t control the circumstances any longer, she makes sure those last paragraphs of the chapter get written.

INELDA, the doula association, has had about 800 students since starting its training program four years ago, according to co-founder Janie Rakow. They are part of a growing number of volunteer and professional death doulas around the country. Not all of them appreciate the term “death doula”; some call themselves “end-of-life coaches,” “soul midwives,” or “transition guides.” Many go into private practice, but others get certified for their own personal growth, or because they want to know how to support friends and family when they become elderly or fall ill.

Some, like Kirillin, have medical backgrounds and offer health care services. But their primary focus is broader. In addition to helping plan a client’s final moments, death doulas often help the dying person create a meaningful “legacy project.” Some people like to write letters to future grandchildren to open at their weddings, or put together their favorite recipe collections to pass on to loved ones.

“These projects don’t have to be big,” says Rakow. “It gives them direction and keeps the focus on living and not dying.”

Many times, doulas solicit anecdotes and shared memories from people in the patient’s life so the patient can see their impact on others. Bhakti Watts, a Seattle-based death doula, is frequently asked to help set up reconciliations so that a dying person can make amends or let go of a long-held grudge. She’s also helped people craft last “traditional” experiences. She recently stepped in as a party planner for a cancer patient who knew he wouldn’t be able eat or speak down the road.

“We invited his friends to a wine bar and had all kinds of food,” she says. “You might think it would be hard, but people loved being there. And it was a chance for him to say goodbye to people he cared about while he still felt well.”

Death doulas can help people plan their own funeral arrangements down to the last detail, which may include being “waked” in their homes or attending their own living funerals.

“There are so many components we can create to have a death that works for that person,” says Rakow.

Taking the fear out of dying

Sitting at someone’s deathbed, or lying in one, are experiences that most of us choose to not dwell on. But a century ago, when most people died at home, nearly every family member had a front-row seat to death, Kirillin says. It’s only when the experience of dying became cordoned off in hospitals, she contends, that people stopped learning about death, and fear and denial set in.

But the cultural reticence to facing our own mortality — or even acknowledging it — is shifting, and the rising popularity of end-of-life doulas is just one sign of the change.

Caitlin Doughty’s Ask a Mortician web series has more than 400,000 subscribers, and her 2014 memoir about her experience as a mortician, Smoke Gets in Your Eyes, became a New York Times bestseller. Atul Gawande’s Being Mortal: Medicine and What Matters in the End is sold at airport newsstands alongside escapist beach reads. And former newspaper columnist Ellen Goodman’s Conversation Project starter kits, which offer tools to talk with loved ones about their wishes before a medical crisis, have been downloaded hundreds of thousands of times.

On a face-to-face level, groups are forming around the world with the overt intent of de-stigmatizing conversations around dying. Volunteers organize Death Cafés that bring strangers together to drink tea, eat cake (life is short, after all), and chat about death. The non-profit Death Over Dinner claims to have tracked more than 100,000 “death dinners,” where people strategize about end-of-life decisions. The ambitious Death Salon has set out to “subvert death denial” by hosting intellectual, death-focused gatherings. And the sixth Art of Dying Conference recently took place in New York.

According to anthropologist Anita Hannig, who teaches “Anthropology of Death and Dying” at Brandeis University, the “death positive” movement dates back to the late 1960s, when Swiss psychiatrist Elisabeth Kübler-Ross’ book On Death and Dying popularized the idea of the five stages of grief. “That could be considered the first wave of public discussion around death and dying, and I think we’re looking at the biggest wave now,” she says.

Baby boomers spurred the current cultural shift, Hanning says, after many of them experienced the death of their own parents.

“What they want is something that isn’t as paternalistic as the models handed down to them,” she says. “It’s almost as if they feel a responsibility to manage their own transitions, curate their own last playlists, write their own obituaries, make their own coffins and plan their own funerals.”

Kirillin sees this same desire for personal choice play out with some of her boomer clients, who want a less-medicated, more natural dying experience. “Yes, people want medical support, but it’s their experience,” says Kirillin. “They know their body knows what to do, and they want to be supported.”

A last best friend

The idea of being yourself up to the end — by foregoing mainstream pain management, for instance, or dying in a familiar setting — can be surprisingly comforting. New York resident Lisa Silvershein saw how both of her cancer-ridden parents benefited from the chance to die at home, as they wanted, and to spend their final weeks with death doula Rakow, who was working at the time through the hospice program at Valley Hospital in Trenton, New Jersey.

“I had never heard of this before and wasn’t sure about it,” says Silvershein. “But Janie built a relationship with my mom, who was not a sharer, and it gave her the opportunity to open up to an impartial person if she wanted to.”

Rakow helped her client express what she really wanted: a book of letters from family members who shared stories of their relationships to her, which could be read to her when she wasn’t fully conscious. Recently, Silvershein’s father passed away, also from cancer, and welcomed Rakow with open arms when the time came for her services.

“He loved having Janie there,” says Silvershein. “And it’s comforting, as a family member, knowing that if he wanted to express something he would feel comfortable doing that with her.”

Death doulas say that’s the core of the service they offer: giving patients the chance to make one last, committed friendship, with all of the emotional resonance that brings.

“Everyone I’ve helped has had a beautiful death, even if it didn’t happen exactly as planned,” says Kirillin. “They opened up to an experience so many of us run from, and they held onto it.”

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Erin Graham is a writer based in Western Massachusetts.

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