What is a good death? Medical literature shows that people generally prefer simplicity. They want to die at home, with loved ones near, and have relief from physical pain and emotional distress. They want to know what to expect and how to make their own decisions. The things people value in death are the same things they value in life: community, open conversation, purposefulness. But only 14 percent of people who need palliative care—which involves not just specialized medical care but spiritual, social, and emotional nurturing—receive it.
Before the mid-1800s, it was common for people to die at home, surrounded by their family, and receive a local burial. But as cities and their cemeteries grew crowded, coffin makers started offering body relocation for burial in rural cemeteries, turning death into a more public affair. The Civil War, with its mass death at a distance, marked an inflection point for the death industry. Undertakers and surgeons at battle sites injected the corpses with chemicals to preserve them against putrefaction so they could be shipped back to their families. Embalming became so common that in 1865, the War Department required its practitioners to obtain licenses, in effect establishing embalmers as a professional class—a reality that was cemented when, in 1882, undertakers created the National Funeral Directors Association and the first school of mortuary science opened. These shifts gave way to the modern death industry as we know it, where the caretaking of the dying and their bodies is no longer the domain of families and instead is outsourced to professionals like hospital and funeral home workers.
Death doulas emerged in response to this defamiliarization of dying. Today, most people will probably serve as unofficial death doulas for friends and family at some point in their lives, caring for terminally ill loved ones or stepping up to make burial and funeral arrangements when other family members are too overwhelmed. Yet the rise of the death doula as a quasi-professional handler is a relatively new phenomenon, going back only a few decades. One early practitioner was Henry Fersko-Weiss, a social worker, who learned about the work of birth doulas and wondered if their philosophy—of treating birth as an emotional and familial process and not merely as a medical procedure—could be applied to death. In 2003, he established an end-of-life-doula program at a hospice in New York, and in 2015, he created INELDA to offer these teachings to the public. The organization has so far trained 6,500 doulas, about 90 percent of whom are women.
I learned about death doulas not long ago, from an Instagram post. A writer I admired had received her end of life doula certification from a program at the University of Vermont and posted that the experience was “life-changing and -affirming.” I was curious, and soon scoured TikTok, Ted Talks, and podcasts for information, which was abundant but opaque. I couldn’t tell what a death doula actually did, but the death doulas I saw online seemed like people I’d want to be friends with. Spiritual but not religious. Well-read and health-conscious, skewing New Age. Most important, they appeared to have fully digested the fact of their own mortality: They were going to die eventually, and they liked to talk about it.
As a group, the death doulas I was seeing online spoke often about guiding the dying towards an elusive “good death.” The idea is that planning for a good death can help us live better lives, and death doulas encourage people to live knowing that dying awaits us all. That means saying I love you to someone who doesn’t know it, going on a perpetually delayed vacation, writing a long-marinating novel—before it’s too late. The death doulas encouraged “death positivity,” or an embrace of our mortality: death, they urge us to understand, is a natural process of the human body.
The death positivity movement was once niche, but it became especially visible during the pandemic, when many people saw firsthand that there are many ways to have a bad death—and thought perhaps it would be worth trying to provide for a good one. They use terms like YODO (You Only Die Once) and organize public Death Cafes to talk with strangers about dying over tea and cookies. To death doulas, dying doesn’t mean you have to submit passively to death. It can be creative, almost like art. They tend to dispense similar knowledge and wisdom, arguing that America’s culture of “fighting” death, which is bound up in the way we talk about illness and extending life expectancies, makes us more susceptible to suffering “bad deaths”—deaths that take place in hospitals, away from our families, with forced feeding tubes or without painkillers. Deaths that happen alone.
But there are so many other kinds of bad deaths—the violent, the sudden, the shocking. What, I wondered, could a death doula do for these? (...)
The training’s first event took place in a wood-paneled conference room that Friday night. Nicole Heidbreder, a Washington DC nurse and one of our two instructors over the weekend, welcomed all of us, who were sitting in groups at round tables, from a small stage. Her voice was airy and hypnotic. As doulas, she told us, we would “gentle the journey” into death. We’d encourage people to talk about dying before it was too late. “You’re probably the kind of people who’ve had an allergy to small talk your whole life,” she said. She would know. Over the course of the weekend, she casually referred to her father’s death from renal cancer and her struggles to get pregnant. Both she and the other instructor, Omni Kitts Ferrara, a cheerful yoga teacher and nursing student in New Mexico, had a welcoming, witchy aura. Both worked as birth doulas, too. “Being around those threshold spaces,” Omni said, “feels really auspicious.”
Nicole and Omni explained what work we’d be learning to do. A good death doula acts like a personal assistant to the dying. She sorts out funeral, insurance, and legal logistics; she keeps a binder of contacts at hospices, medical facilities, and massage therapists; she serves as a neutral liaison to spouses or children. She helps a dying person carry out their final projects, whether completing a memoir or making a video to show their children how to use power tools. She helps them create advanced directives, legal documents that outline medical decisions, and vigil plans for the moment they die: who they’d like at their bedside, what atmosphere they’d like to create. During the death, she watches over the family to make sure everyone has what they need, because it’s easy to forget to eat, and drink water, and rest. After the death, the doula helps family close social media and bank accounts, transfer car titles, hire people to clean a vacated apartment, tying all the loose ends of the recently living. She guides them through their grief.
These services cost money. One death doula I spoke with charged $175 an hour, and she sometimes did pro bono work; Pat McClendon, a death doula in my hometown, would tell me she usually charges around $3,000 for an initial phone consultation, ten or so sessions to finish up final projects and plan for the death, and the vigil itself. Death doulas are not covered by insurance. They also compose an unregulated industry. There’s no supervisory body for end-of-life doulas; no official diploma. Dozens of online and in-person training organizations offer death doula certification—some appearing less than reputable, often for hefty fees. INELDA would theoretically prepare us to do death doula work, but since there are no official death doula regulations, we technically could have been practicing before the training even began.
As an icebreaker, Nicole asked us to share with our tablemates a “favorable” death we’d experienced, and a less favorable one. Ours was a group of death-obsessed people, I quickly gathered. We agreed it was subversive, and even fun, to speak openly about mortality when many people in our lives frowned upon that kind of talk, as though discussing death makes you more likely to die. (...)
Over the course of the weekend, our group learned tools for helping a dying person. We reviewed a guide of helpful conversation starters to coax a dying person’s deepest thoughts into the open air. “How do you hope to be remembered?” we asked one another. “Do you have any worries for the days ahead?” We paired off to practice deep active listening, taking turns talking about our hopes and regrets while our partners tried to refrain from interjecting their own opinions.
At the end of our second day, we practiced a meditation called guided imagery, which can help people visualize a relaxing scenario at the moment of death. The meditation is meant to soothe the dying person’s fears of pain, or of not making it to their desired afterlife, by instead conjuring a special place from life. I paired with Karen, a middle-aged, self-described shamanic healer who wore a T-shirt reading “I am safe, I am grounded.” She was from Newtown, Connecticut, where, she told me, she helped community members confront the trauma of the Sandy Hook shooting. We settled onto the floor, and I described to her, in as much detail as I could muster, a physical place where I felt comfortable: my friends’ house in Las Vegas during monsoon season. While I closed my eyes, she guided me through their living room and onto their back patio, and in my mind I saw trash bags flying in the wind, heard sirens wailing from the fire station across the street. I could sense my friends nearby but I couldn’t see them; instead, there was lightning and a barking dog and the smell of wet dirt.
When it was my turn to guide, Karen lay on her back and said, “My favorite place is Peru.” Specifically, a medicine man’s hut in Peru. It didn’t matter which hut, I could just make it up. More important were the rainforest and the stars, which seemed close enough to grab from the sky. I confessed that I’d never guided anyone through a meditation before, but I tried on an ethereal voice and told her to breathe the clear mountain air, watch the shadows of leafy trees shift as the sun set.
All this was, I suppose, how we “gentled the journey” of dying. But I found my peaceful thoughts interrupted by the memory of my friend Haley. A decade ago, the summer after my first year in college, Haley drowned during a trip to Germany. We’d messaged each other every day, imagining what our friendship would look like as soon as we returned to campus; we’d only met a few months before, and were going to live together in the fall. “The next years are going to be so good,” she texted me in June, and in August I was sitting in a church, staring at her face projected onto a screen. One of the last things I texted her was, “Be safe.”
Before Haley, death was abstract and removed, rarely crossing my mind. I knew, intellectually, that life doesn’t go on forever, but I was a teenager, and the years ahead seemed not just good, but guaranteed. If I did consider mortality, it was to assume I’d someday die in my sleep, or “of old age.”
For a while, after she died, I became fixated on drowning. I avoided submerging myself in water, and when I did, I was aware of all the water on top of me, aware that it could kill me if I wasn’t careful. Now I fixate on cars. A car accident seems the most likely way I would die young, so my mind strays while I’m driving: to cars striking me as I cross the street, to cars slamming into me as I merge onto the freeway. I often imagine what it will be like to die, and sometimes, though not often, this fixation becomes an expectation: I will die, imminently.
The kinds of dying we discussed at INELDA, however, didn’t look anything like that. A typical scenario: In the months beforehand, we grow weaker. We stumble and fall down. In the weeks before, our wounds stop healing and our skin becomes mottled. We grow confused, sleep more. A few days and hours before, we start to smell bad. Our faces turn blue. Our mouths gape, like fish out of water. Right before we die, our breathing slows to shallow rasps. Some people experience terminal lucidity, also known as the “death rally,” a phenomenon of sudden cognitive improvement. Omni told a story she’d heard of a woman who had never liked beer, but in her dying hours regained consciousness and requested one. “She chugged it, the entire beer,” Omni said. A few hours later, she died. (...)
A spokesperson for INELDA told me the workshops were “transformative” for some attendees, and it did seem that way for Kim and others. But I knew by now that wouldn’t be my experience—and maybe I’d known that all along. Each night after the training finished, I’d sit in darkness in my rental car, rain pattering on the windshield, and try to process the intensity of our discussions—the procession of death stories, one after the other. But each night I was exhausted from the overload of information and stories, so I’d drive back to my hotel through the misty forest, swerving to avoid frogs, and collapse onto the bed. During partner activities, I tried to make myself feel something, but mostly I felt dehydrated, and sore from sitting all day. I sensed, too, that I’d grown cynical from losing a friend so young. I bristled during a workshop when a chatty psychotherapist asked what meaning I could find in Haley’s death. Nothing, I told her, irritated at the assumption that I had learned something from her loss. I was skeptical of the idea that death might be beautiful and I was frustrated when people suggested that pain had something to teach, that loss made us better people.
I wondered how my hardness had quietly shaped the way I respond to other people’s losses. If people believed their experience of loss was beautiful, perhaps I should let it be. But personally, I knew that I wouldn’t find catharsis in repeating the same stories I’d told about Haley a hundred times. I missed my friend, and it had been nine years since she died. No single workshop, no single weekend, could change much.
by Meg Bernhard, N+1 |
Read more:Image: Theodoor Verstraete, To the Vigil
