Grief Guides

Three months after the training, I traveled to my hometown in southern California. Officially, I was there with my parents and sister for my grandmother’s 88th birthday. Unofficially, I was there to ask her how she wanted to die. I’d looked into death doulas in the area because I was curious, but I had a feeling my grandmother wouldn’t want to hire one, mostly for financial reasons. If she had a definite death plan in mind, she’d never told us. Sometimes she’d say she wants to be buried in the plot next to her parents in Texas; other times she’d say she wants to be cremated, because cremation is cheaper. My family wanted to figure out her wishes, but we rarely discuss things like this together, and broaching the subject had so far felt overwhelming. I offered to try.

Among the death doulas

Theodoor Verstraete, To the Vigil

Angie wanted to die in a cabin at the base of a snow-covered mountain, with warm drinks to go around. Stacey wanted to die in a cool room with a down comforter, battery-operated candles, chapstick on her lips, and absolutely no cellphones. Sarah wanted to die at her fifty-acre ranch in southern Indiana, lying on her patio, as the grandkids caught lightning bugs. Once dead, she wanted her body to be washed, rubbed with frankincense oil, and wrapped in white gauze. I lived in a small house with roommates. An awkward place to die. I opted instead for a destination vigil at my parents’ home in California.

Mine was, like the others’, a hypothetical death story: We’d each been asked to imagine the final days of our own terminal diagnosis. In real life, I was healthy and young. If I were to die, it would likely be sudden. I’d be killed in a car crash, or fall down a staircase, and I’d have no time to make arrangements. But to complete my beginner training with the International End of Life Doula Association (INELDA), to be qualified to guide another person through the process of dying, I first had to plan for my own death.

Angie, Stacey, Sarah, and I were sitting on the floor of a wood-paneled, yoga mat–lined conference room as part of a three-day retreat at the Omega Institute for Holistic Studies, in Rhinebeck, New York. The Omega Institute hosts workshops themed broadly around wellness, and ours, despite its somber content, set an easy, comfy-confessional mood. We were cross-legged, our knees almost touching. The instructors had asked us to use our “deathbed voices,” but Angie was excited and spoke breathlessly. She told us she wanted her loved ones to touch her face after she died, to run their hands through her hair.

There were eighty-four of us would-be death doulas in total—a sold-out course. All of us has paid an $800 fee and received a 119-page manual and twelve hours of pre-training homework. But we’d all come to INELDA for different reasons. Sarah was a retired emergency room nurse whose husband died of stomach cancer shortly after her own ovarian cancer diagnosis, and she was now on a “spiritual quest” to learn about healing. Stacey was a former health care data analyst and long Covid patient from Michigan who was inspired by seeing Alua Arthur, a prominent end-of-life doula, help the actor Chris Hemsworth map out his future death in the documentary TV show Limitless. Angie was a secretary at a Boston hospital who’d witnessed how young suicides haunted ICU nurses. She wanted to avoid the same burden by learning to face death head-on. I came to INELDA because I think about death all the time.

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?

My death doula training took place on a muggy weekend last July. When I arrived, I wandered the Omega Institute campus, which looked like the visual manifestation of mindfulness. Everything was green. The campus was busy; that weekend, the Institute was also hosting workshops on reiki, sound healing, and anxiety. I took a photo of a dozing fox, then walked through the Ram Dass Library—an homage to the late mindfulness guru—and perused books on psychedelics and angels. Everyone was welcome to attend daily tai chi classes on the lake and yoga classes taught by a former Sesame Street actor.

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.

My group’s discussion evolved into a looser conversation about our relationships with death. Yael, the daughter of Holocaust survivors, grew up thinking that when you got older, you stepped into an oven and died. Terri, a retired paramedic, said her Irish Catholic family “does death well”: They know exactly who to invite to the funeral and what food to cook. Gina, who had a 2-and-a-half-year-old daughter, had just been diagnosed with breast cancer. She hadn’t known about the cancer when she signed up to become a death doula; she’d scheduled surgery for the day after the training ended. “I’m not sure who I’m doing this for anymore,” she said.

When it was my turn to share, I talked about a bad death: my grandfather’s. My mom, brother, and I had watched from behind the window of his memory care facility while he died of Covid, alone. My family wasn’t told where his body was sent, so I had to call funeral homes to locate his ashes. The powerlessness I imagined him feeling—and that I, by extension, also felt—was what first prompted me to sign up for this training. I mentioned, too, that my grandmother was still alive, but she’d had a major stroke two years earlier and had lost the ability to walk on her own. She seemed willing, even eager, to talk about dying; a few years ago she’d made a habit of listing off her friends who’d already died, ending on a note of triumph: “But I’m still here.” I wanted her to have a different death than my grandfather had, not only for her sake, but also for my family’s. If her death was easier, it would be easier on my family, too.

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.

On the final afternoon of the training, we split into groups to plan customized vigils. The exercise was intended to mimic the way doulas effectively stage-direct a death, ensuring that every loved one who’s present has a role to play if they want. It was a funny exercise for many groups, who created fake vigils for celebrities—a jewel bequeathing ceremony for a terminally ill Kris Jenner, for example—but in my group, a woman named Kim asked if we’d be able to plan one for her late son, Paco. He’d had a heart attack in a hotel gym at age 31 and that day would have been his 40th birthday. “He died alone, and that’s the one thing that bothered me,” Kim said. If we didn’t mind, perhaps we could imagine a scenario in which he died surrounded by friends and family?

Kim was a former theater director, in her element as she brought together everyone’s ideas for the most idealistic vigil possible. Paco loved the Adirondacks, so we decided to set the vigil there, starting at the trailhead of Mt. St. Regis, a hike Paco loved. His friends would carry him up the mountain, take a shot of Jameson, and, at the top, listen to Wu-Tang Clan, whose stylized W logo was, in real life, engraved on his headstone. He’d then take his final breaths. But as for what should happen next—we were stumped.

“When the music fades, everybody takes a moment to honor him,” offered one woman. “But then the party continues. If anybody’s coming up the mountain, guess what? They’re getting a shot of Jameson too.”

Kim accepted the idea and thanked us all profusely. It was moving to see her create a version of a good death for her son, and I hoped the exercise might make Kim’s memory of her son’s death less traumatic. And it did seem genuinely helpful for her. Reimagining her son’s story, Kim later told me, allowed her to dislodge the regret that had clung to her for so many years. We were told that personal catharsis was essential to our training. Before you can be an effective death doula, you need to have a grasp on your own grief. Clients only have one death, and the worst thing a death doula can do is project her own story onto it.

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.

The training ended anticlimactically, with a discussion of next steps. Omni and Nicole recommended that we try to volunteer with a hospice, to gain experience. When we were ready to offer our services, they suggested a sliding scale. As I packed up to leave, I still couldn’t wrap my head around how it would feel to do the work in practice. It felt clear to me that our group activities had been the work of a room of healthy people playacting at death. The structured conversations we’d performed during the training had none of the strain and unpredictability of real-life encounters—like immobilizing grief or angry resentment, all the messy illogic of loss. It was unclear how we’d find clients, and I didn’t feel ready to work with actual dying people, anyway.

We dispersed. Some were flying across the country, others driving north. Nicole returned to DC to pack up for a move to a farm near Vancouver, British Columbia. Omni headed to New Jersey for a Beyonce concert. I spent the evening wandering along the Hudson River, thinking about the deaths in my life. After Haley drowned, no one knew how to handle my intensity—rage and numbness and bewilderment and sorrow—so I sought out other people who could understand my rawness. For a long time, it felt like there was no one who could. But eventually, I found comfort in people who’d known death from a young age. I’m still drawn to such people. I dated someone whose father died when he was a child. A woman I met a few years ago, not too long after her fiancé died of a traumatic brain injury, has become one of my closest friends.

Haley’s death is vastly different from whatever end my grandmother will face. In many ways, my grandmother is the ideal death doula client, still cogent and able to articulate her wishes. My grandmother is at an age where we expect death to happen, and even if accepting its inevitability is difficult, her age has made it possible to make some preparations: encouraging her to draw up a will, asking about her burial preferences. This is what we often think of as a good death, Alua Arthur writes: “one that happens at old age, in our own home, surrounded by loved ones, after full peaceful lives, having our humanity acknowledged and honored at the end of life.” Of course, even being afforded a long life is a privilege.

INELDA’s ambition is to create the conditions for a “good death.” It’s a noble and palatable image, but it cannot accommodate so many tragedies of modern life: deaths by accidents, or guns, or police brutality, or overdoses, or suicides.

Far from being the “great equalizer,” as many believe, death is always bound up in the ways we live, as the inequality in Covid suffering made clear. In the US, the people more likely to die earlier in life, and without much ability to plan, are people of color, poor people, homeless people. Their life expectancies are lower for myriad reasons: inability to afford preventative care, lack of access to healthy food and clean air, violence directed at specific identities. Systemic racism has historically robbed Black people of our idealized version of a “good death,” Arthur, one of the few visible Black death doulas working today, says; Black women, for example, are less likely than white women to receive pain medication at the end of life. More diverse death doulas could theoretically rectify that inequality, Arthur told me, but more urgently we need fundamental shifts in our medical system, in our social support systems. We need to provide the conditions of dignified living to create the conditions of dignified dying.

So much of the language around the burgeoning death doula movement, and its vision of what constitutes a “good death,” feels too clean, too neat. I believe in the work of death doulas: in helping people find comfort and dignity at the end of life, and I believe in talking about death in the open air on a regular basis. But I left INELDA’s training wondering if there’s even such a thing as a good death, and what we stand to lose when we focus so much on trying to achieve it. Maybe death is always bad, even if you also think it’s beautiful, and we have to work with that. Maybe end of life doulas can only make bad deaths better.

Three months after the training, I traveled to my hometown in southern California. Officially, I was there with my parents and sister for my grandmother’s 88th birthday. Unofficially, I was there to ask her how she wanted to die. I’d looked into death doulas in the area because I was curious, but I had a feeling my grandmother wouldn’t want to hire one, mostly for financial reasons. If she had a definite death plan in mind, she’d never told us. Sometimes she’d say she wants to be buried in the plot next to her parents in Texas; other times she’d say she wants to be cremated, because cremation is cheaper. My family wanted to figure out her wishes, but we rarely discuss things like this together, and broaching the subject had so far felt overwhelming. I offered to try.

My grandmother is a quirky woman. She can be particular about small things, like a subtle shift in someone’s tone of voice, or if they arrive late to visit her. A misplaced comment might send her into a tailspin of anxiety. With all this in mind, I took her for a walk around the pond near her facility one sunny afternoon in November. She sat in her wheelchair, a little quieter than usual, while I pushed her. I hadn’t seen her in a few months, and it was difficult to hear her from behind. I felt awkward. I tried to think of an open-ended question.

I asked her about the houses where she’d lived. She said she missed her house in Fredericksburg, Virginia, where she worked as a teacher, because many of her neighbors were professors. She missed her childhood home in Tucumcari, New Mexico, even though it was plain. We paused to look at the pond, and I sat on the ground next to her. I asked what brought her joy, how she was getting on with my mom and my aunt, and if she’d ever considered remarrying. I brought up her habit of listing the names of people she once knew, and she said, “All my friends have died.”

This seemed like an opening. “How does that make you feel?” I asked, feeling a bit too much like a therapist.

She said it made her wonder: “Why haven’t I died?”

We spent the next half hour in sprawling conversation. My mom, she told me, wanted her to live to 91, the age my grandmother’s mother was when she died. But she’d be OK if she died today, at 88. She didn’t seem afraid of death, or hesitant to talk about it. But when I asked her whether she’d prefer a cremation or a burial, she revealed one unexpected fear: Being buried alive.

In my surprise, I laughed, and she laughed, and she said, as though already underground, “Get me out!”

As for a vigil, she didn’t want to die in her current facility. She’d moved there just two years ago, after her stroke, and it didn’t feel like home. She wanted her two daughters to be with her as she was dying, and no one else. That, at least, was what she wanted for now.

We headed back to her facility to try to make it in time for a stuffed pony racing game with the other residents. As I got ready to leave, she gave me a final instruction. Could I put a cellphone in her casket, in case she needed us to disinter her still-living body?

She repeated the joke on the last night of my visit, when my parents, sister, and I joined her for dinner at her facility. “Don’t forget what I told you,” she said, as she pushed a frittata around her plate with her fork.

“She wants a cellphone, in case she’s buried alive,” I clarified.

“She can call us from the afterlife,” my dad said.

My grandmother mimicked holding a phone to her ear. “Hi, it’s Grandma,” she said. “I died.”

The conversation did make my grandmother’s eventual death seem gentler, the way the “good death” movement encourages: a special event, to some sacred. Like a birth, maybe, but instead of arriving you’re departing. I want to think about death this way, but I’m not sure I’ll ever be able to detach myself so cleanly. This is the cost of loving someone: Either you die or they die, and it’s always going to be hard. My grandmother is going to die. I’m going to die. Haley died. We’d wanted to go to a concert together at the beginning of our second year in college. She’d wanted to fall in love. She’d wanted, so badly, to get married. I’d forgotten about that until recently, when I returned to New York for a college friend’s wedding, held at Chelsea Piers. The Hudson River refracted slivers of dimming sunlight into the room, and friends who I hadn’t seen in a while, friends who’d known Haley, greeted me with short histories of the past few years. It was good to see them, and though these days I’m trying to focus less on my own mortality and more my life ahead, I was overwhelmed with grief for Haley, for what she’d never have. Watching the newlyweds dance, I thought about rituals, and thresholds, and let my mind drift to the special place I’d used for the meditation at the death doula training: The backyard in Las Vegas during monsoon season. Trash bags were flying and thunder was cracking, and my friends were all still here.

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