The Doulas Who Help Us Die
Before meeting a client, Virginia Chang, an end-of-life doula, performs a ritual that she calls “becoming an empty vessel.” She closes her eyes, plants her feet on the ground, and holds her arms at her sides, palms up. She breathes deeply through her nose. To still her mind, she begins to quietly chant a Sanskrit mantra such as lokah samastah sukhino bhavantu—may all beings everywhere be happy and free. Then she starts to move, pushing her hands away from her body, raising them above her head, and lowering them again in a gesture of surrender. Because she does this on the streets of New York City, no one pays her any attention. Delivery guys squeeze by with their handcarts; kids dodge and weave on their scooters; dogs sniff near her ankles and move on. Chang is a slight woman in her early sixties, with graying hair cut into a long, straight bob. She likes to wear lacquered red clogs, stretchy black pants, and a thin scarf of turquoise or coral pink, even in the heat of summer. To be of use to the dying, she believes that she must first set aside the buzzing miscellany of thoughts and cares that constitutes “her shit,” and that is what her ritual helps her do.
On a bright afternoon in May, Chang pressed her hands together at her forehead, bowed slightly, and opened her eyes. Then she checked her watch. She was standing in front of an apartment building on East Fifty-second Street, where her client Eleanor Lennard had lived since the nineteen-sixties. Eleanor was a hundred and one. She had been widowed for more than two decades. Nearly all of her friends were dead. She had lost most of her sight to macular degeneration, so she could no longer attend meetings of her amateur photography club, but her mind was still sharp. Her daughter had recently managed to get her admitted to hospice—no small feat, considering that extreme old age does not in itself count as a terminal diagnosis—and she had round-the-clock care from home health aides. But Eleanor felt lonely, discarded. She wanted to have conversations, to discuss art and literature and the news. When her hospice learned this, they sent Chang.
The word “doula,” many doulas like to say, derives from the Greek for “woman who serves.” (Technically, the word means “slave,” but its Anglophone usage gives it a gentler cast.) There are many different ways that end-of-life doulas—or death doulas, a term that some favor—interpret this mandate. They might help clients articulate their preferences regarding medical treatment, or advocate for their wishes amid the competing demands of imperious doctors and anxious family members. They might offer Swedish death cleaning or shrouding services, or conduct funeral preparations and grief support. The role is nonmedical; at its core, it is an act of accompaniment toward the unknown.
Chang had been seeing Eleanor weekly since January, and looked forward to each meeting. At noon, though, when she had called to confirm her visit, an aide reported that Eleanor was disoriented and agitated. She had tried to get out of bed by herself and had to be restrained. Inside the apartment, the shades were drawn. Family portraits decorated the hallway: smiling children; a couple leaning toward each other in a private moment of happiness, the woman with short, dark hair. Two aides eased Eleanor from her bedroom to an armchair in the study. She wore a pink gauze dress; her hair was gray now, still cut close. On the air-conditioner behind her rested a folded American flag, of the kind presented to veterans’ spouses at their funerals.
“It’s your favorite girl,” one aide said, brightly. “Woman, excuse me.”
“We’re all girls compared to her,” Chang said.
“Is that Virginia?” Eleanor asked.
“It’s Virginia.” Chang spoke loudly and slowly. “You know you can’t say no to me!”
“It’s the same way around, if you think about it,” Eleanor said.
Chang knelt by Eleanor’s feet. She took the old woman’s left hand in both of hers, gently stroking Eleanor’s fingers and gazing steadily up into her face.
“I never belonged to the faithful when it comes to belief,” Eleanor said, as if she had been in the middle of discussing the subject. “I mean, I understand what they stand for, because the lessons are there. But religion, to me, is a kind of sport.”
“Interesting. Eleanor, have you been turning to God more?”
“No.”
Chang laughed. “O.K.”
“What I was trying to say is, it isn’t the God that some people imagine, but it is my God.”
“Well, tell me what your God does for you.”
“Frankly, now he just makes me angry.”
“Why?”
“Because of brutality,” Eleanor said. “The world is in an ugly sphere now. And my personality with my children, which was not good.” Her speech began to wander. She reached for a word, couldn’t find it, and laughed in defeat. “Why did you get here this early on a Sunday?”
“It’s Friday at three, when I always come.”
“It’s Friday? Good! I thought I had lost a whole day. It came on so suddenly. I was fine. I could maneuver and walk around with a walker, and suddenly I was a different person.” She had been furious when the aides told her that she couldn’t get up, for fear of a fall. “They’re busy assuming there’s something really wrong with me. I know I’m not a good-mannered person. I want my rights.”
“You always stay true to yourself,” Chang said. “And that’s what’s most important.”
Based on the aide’s description, Chang had expected Eleanor to be terse and withdrawn, but she wanted to talk. Dark things were on her mind. She spoke angrily of a cruel, manipulative person she referred to only as “he,” until Chang asked, “Eleanor, are you still watching the news?” She suspected that Eleanor might have started her final decline, but she kept that thought to herself. She would return early the next week. If anything changed in the meantime, the aides knew to call.
“Childhood is the kingdom where nobody dies,” Edna St. Vincent Millay wrote. By that definition, Chang’s childhood lasted through adolescence and deep into her adult years. None of her relatives died. None of her peers died. She did lose a pet—a gerbil—and that was sad, but hardly tragic. “I really considered myself an ordinary, average person in America, which is to say, I never thought about death and dying,” she told me recently.
Then, in September, 2016, when she was fifty-two, Chang’s father died. That January, so did her mother-in-law, followed by her own mother, three months later. This suite of losses severed Chang from reality as she had known it. Her mother’s death was relatively smooth—she had dementia, and her decline was swift—but the other two were brutal ordeals. Chang’s mother-in-law, who suffered from a host of ailments, had been subjected, while unconscious, to an invasive emergency procedure that her husband tried to refuse; she died in recovery. Chang’s father had a heart attack at his assisted-living facility; though he was immediately pronounced dead, a team of E.M.T.s performed CPR and defibrillation as Chang begged them over the phone to stop. “Don’t look under the sheet,” a nurse told her, referring to her father’s battered body.
Chang’s family was not naïve about the practice of medicine; her mother and sister were doctors, her mother-in-law a nurse. Chang saw herself as an independent, savvy New Yorker. Yet she had never experienced such powerlessness or despondency. “To be so disregarded at the end of our lives—I thought it was a sad statement on our society,” she said. “Is this what death is? Is this what we have to accept? I honestly didn’t know.”
About a decade earlier, a hospice social worker named Henry Fersko-Weiss had wondered the same thing. Hospice offers terminal patients an alternative to the chaotic, clinical environment of a hospital; the emphasis is on dignity and comfort rather than on curative treatment. Even so, at the large hospice in New York City where Fersko-Weiss worked, he saw too many deaths that he considered less than ideal, if not downright bad. A person who wanted to die at home might instead be rushed off to the hospital. A family member might insist that a loved one keep “fighting,” couching denial as encouragement. An exhausted spouse might step away for a nap and miss her partner’s final breaths because she hadn’t known how to recognize the signs of death.
One root of these problems, Fersko-Weiss believed, was an inability to communicate frankly about what death and dying entailed. “Our collective fear of death is so strong, our defenses so well maintained, that when a person receives a terminal diagnosis, he or she is totally unprepared and often hides within a fragile bubble of hope,” he later wrote.
Fersko-Weiss had a friend who’d recently become a birth doula, and the concept intrigued him. The doula role emerged in the United States during the nineteen-seventies, as a reaction to the concern that birth had become overly medicalized. Doulas sought to empower women by educating them about childbirth, and by providing physical and emotional support before, during, and after that transformative event.
Dying was a kind of labor, too. A birth plan, Fersko-Weiss thought, could be translated into a death plan. Where did a person want to die? Whom did he want to be present? What type of music should be playing? Instead of assisting in the birthing room or the nursery, end-of-life doulas could keep vigil over people during their last hours, providing comfort and companionship and helping a family find peace.
Fersko-Weiss began to formulate a doula-training program of his own. A devoted Zen Buddhist, he drew on spirituality—and on psychotherapy. He was particularly influenced by the mid-century developmental psychologist Erik Erikson, who believed that life consists of eight stages of development, each characterized by a central psychosocial conflict. Erikson called the final stage “ego integrity vs. despair.” As people at the end of their lives reflect on their experiences and relationships, they can either achieve a valuable sense of fulfillment and coherence—integrity—or become mired in bitterness, fixating on failures and unrealized dreams. Building on this notion, the gerontologist Robert Butler created the strategy of “life review,” in which a person is guided through an examination of the past in the hope of producing the happier of these outcomes. Fersko-Weiss, who trained his first group of doulas—seventeen of them, all volunteers at his hospice—in 2003, incorporated life review into his methodology. In 2015, he co-founded the International End-of-Life Doula Association (INELDA), to offer trainings around the country and beyond.
After the deaths of her parents, Chang was lost. She regularly went to meditate at the Bhakti Center, in the East Village, seeking to escape her grief. On a June day in 2017, she saw a flyer there advertising a talk called “Why Death Matters,” to be given by Fersko-Weiss. “Honestly, I don’t remember anything about the talk except for Henry talking about end-of-life doulas,” she said. “I just thought, Why wasn’t there someone like that there for me?”
Chang asked Fersko-Weiss out for coffee, and they struck up a friendship. In early 2018, she took an INELDA training: a few days of people discussing how to improve the experience of death and dying. Then she enrolled in an end-of-life-doula program at the University of Vermont: eight weeks of people discussing how to improve the experience of death and dying. Still, she wasn’t sure that she wanted to become a doula herself. “You’re jammed full of all this information, but you’re, like, ‘This is just information,’ ” she said.
Chang, who has a Ph.D. in organic chemistry from Stanford, began her career in new-drug design, then worked as a chemical-contamination expert in the cleanup of the Pelham Bay Landfill, in the Bronx. She stopped working in her thirties to raise her children. Now she was an empty nester, with time on her hands. She decided to devise an experiment. She would spend a year volunteering at V.N.S. Health, a hospice in New York, and apply the doula methodology to the patients there, to see if the skills she had acquired actually worked. She practiced active listening—a kind of deep, compassionate attention meant to facilitate openness and connection—and “unconditional positive regard,” a technique, developed by the psychologist Carl Rogers, that entails demonstrating total acceptance of another person. She mirrored; she validated; she figured out how to ask exploratory, nonjudgmental questions, and how to hear the responses without adding her own two cents. If she was tempted to interrupt, she reminded herself to WAIT, an acronym she had learned in her training which stood for “Why am I talking?”
“Guess what?” Chang said. “It works.” She opened her private practice, Till the Last, in 2019. (She continues to volunteer with V.N.S.) As Chang sees it, her role is “not about telling you that you can have a good death—it’s not about trying to make it beautiful or sacred or reverent.” She prefers to think of it as a reframing. “You’re creating environments where a person is telling you things that they haven’t said to anybody else,” she explained. “Once you’ve established that trust, you can go anywhere in the future with them. You can get them to look at difficult emotions. You can have hard conversations. You can take them to places of dreaming big.” Death may be the end of life, but dying is still a part of living.
These days, as a recent headline in Town & Country announced, it can seem like “Suddenly Everyone Is a Death Doula.” INELDA estimates that it has trained more than ten thousand doulas globally in the past decade, and the University of Vermont program, where Chang now teaches, has trained more than five thousand since it began, in 2017. Some end-of-life doulas think that their field is forty years behind the birth-doula movement, but others say twenty, or only ten. “If people know about this service, they will take it—that’s a guarantee,” one doula told me.
End-of-life doulas attribute the rise of their field to the “silver tsunami”—nearly a fifth of Americans are sixty-five or older—or to the apparent spike in cancer rates among people under the age of fifty, or to the COVID pandemic, when it became blatantly clear what a bad death could look like. In a broader sense, though, the end-of-life-doula movement can be seen as the latest chapter in a societal reconsideration of death that has been under way for more than fifty years. In the 1978 book “The Craft of Dying,” the sociologist Lyn H. Lofland proposed that dramatic cultural and technological changes had led Americans—“especially affluent middle-class Americans”—to adopt new attitudes and approaches to death. Thanks to modern medicine, people were able to live longer, which paradoxically meant that the dying process, extended by treatment, took longer, too. Death had become bureaucratized—removed from the home and relegated to the hospital—and secularized, stripped of ritual and fixed meaning. Lofland was interested in what she called “the happy death movement,” a loose coalition of people who had set out to solve these problems. Some of their solutions seemed offbeat or marginal, but others have become commonplace. Hospice was itself a countercultural practice in the seventies, limited to a handful of cities around the country. By 2024, more than half of Americans on Medicare were on hospice when they died.
One goal of the happy-death movement was to puncture what its members considered to be a taboo around discussing death. Today, there is a growing sense that embracing mortality can be a component of wellness. “A lot of my clients now are people who aren’t in crisis and there is no threat of death,” Darnell Lamont Walker, a doula based in rural Georgia, told me. “They’ll say, ‘Can you help me plan that day—or the rest of this life?’ ” Virginia Chang told me that, as a result of her work, “I’m living a much more intentional life.” Recently, she was approached by the editors of the For Dummies guides to lend her expertise to the series. In “Preparing for End of Life for Dummies,” published earlier this year, she counsels even readers in good health to think about death daily, a practice that she calls taking a “mortality vitamin.”
In May, I went to Los Angeles to meet Jill Schock, who practices under the moniker Death Doula L.A. Schock is forty, with dark hair and cat-eye glasses; her arms are covered with delicate tattoos, including one of her late cat Reuben, whose ashes she wears in the form of a starburst-shaped ring on her left hand. Schock lives in the city’s Chinatown, in a former art gallery that she has remodelled into a studio dedicated to fostering the public’s understanding of grief and death. On the evening I visited, she was hosting a “grief yoga” class, advertised, on Facebook, as “a gentle way to move grief, sadness, anger, and other big emotions through the body instead of carrying them alone in the mind.” The previous week, she had organized an “eco death fair,” in collaboration with a local funeral home, to promote alternative corpse-disposal methods, such as human composting and burial at sea, that are environmentally preferable to traditional burial (coffins don’t typically biodegrade) and cremation (high emissions).
Schock’s studio is bright and inviting, with a polished concrete floor and double-height walls; a staircase leads to a small, closed-off loft—her private quarters, which she shares with Monty, her frenetically friendly dachshund-terrier mix.“Every month or so, we have an exhibit that’s mortality-adjacent,” she said. The work on display, a group of textiles, was by an artist named Kate Saubestre. A suit of pinkish canvas skin, decorated with pepperoni-size areolae and an intricately furred mons pubis, hung from a hanger, as if waiting for its owner to return and slip it back on. In the center of the room, a shroud that had been molded to fit Saubestre’s body rested on top of a handsome black pedestal that proved to be a casket on wheels—what Schock called “a nice piece of utility furniture.”
Schock grew up in Santa Clarita, California, the daughter of two schoolteachers. She first found her way into the death field as a chaplain, studying at Vanderbilt’s Divinity School and training in emergency rooms, though her interest in faith was more philosophical than spiritual. “I’m an existentialist,” she said. “Kierkegaard is big for me.” She went on to work in hospice, but lost her job, in a bitter twist, after taking a leave to attend to her father as he died. When she learned about end-of-life doulas, she said, “it just clicked so hard. I was already qualified to do it.”
Schock opened her private practice in 2016. Initially, she said, “nobody liked my business name—‘Death,’ you know.” But she was adamant. “Everyone goes for the euphemisms, like ‘sacred transitions,’ ‘crossings,’ all of that kind of illusionary stuff,” she said. “I just wanted to work with people who fully knew they’re dying. I’m not going to disrespect them by using a different word.”
The next day, I accompanied Schock in her black Ford Edge—“MY OTHER RIDE IS A DETERIORATING BODY OF FLESH AND BONES,” the bumper sticker read—to visit her client Karyn Balzary, who was sixty-six and dying of ovarian cancer. Karyn was in bed, propped up on a pillow, very thin under her floral coverlet. Her eyes were piercingly blue. Next to her was a stuffed bilby, which her daughter, Lily, had owned since she was three years old. Lily was twenty-seven now.
Karyn was first diagnosed in 2019, and tried everything from heated intraperitoneal chemotherapy to sound baths. She stopped treatment last December. “I’ve kind of said goodbye to everyone I need to, except for Gavin”—her husband—“and Lily,” she told Schock. Her brother, Michael, had come to visit before going on tour with his band; one of her best friends, Suzie, had come from Australia, where Karyn was born, and would be leaving soon. “Emotionally, I’m at the point where I wish that I could just turn out the light,” she said.
“That’s good, that you’ve done all your goodbyes,” Schock said. She asked Karyn what she thought people should know about how it felt to die.
“I think the first thing that we all have to accept—and it’s not that hard—is that death exists,” Karyn said. “It’s not scary. It just sucks. It sucks big fat donkey dicks.”
On the latest season of the HBO hospital drama “The Pitt,” Roxie, a mother with advanced lung cancer, is admitted to the emergency room. She is accompanied by her husband, Paul, and her death doula, Lena. Roxie is depleted, in terrible pain. Though she is on hospice, Paul is her primary caretaker, and he is eager for her to return home. But Lena can see that Roxie is reluctant to leave the hospital. She is tired of putting on a brave face as her body fails; she feels that Paul and their two young sons are living with her ghost. Paul is baffled, distraught. If Roxie stays at the hospital, he will have to accept that she will never leave.
“From my perspective, the family is as important as the dying person,” Virginia Chang told me. She estimates that she has assisted more than a hundred people through the dying process, and she includes her clients’ family members in that number. Diane Lennard, Eleanor’s daughter, said that Chang routinely pulled over while driving to take her calls. “This is so new to me,” Diane said. Like many people with elderly parents, she finds it challenging to meet her mother’s emotional needs, to say nothing of her physical ones. “I call Virginia, and I say, ‘What do I do?’ ” she told me. “ ‘How do I handle this? What should I say?’ ”
Recently, Chang told me, she’d helped engage with a hospital ethics panel on behalf of a family who wanted their loved one released to die at home. “I never do anything that’s solely the dying person’s wishes unless the family is completely on board,” she said. “And if there is any disagreement—or not even disagreement but an emotional complication—I won’t move forward until everybody is in a good place about it.”
This surprised me. Some doulas I spoke with told me that they felt it was their responsibility to advocate for a client’s desires, even—perhaps especially—in the face of familial pressure. On “The Pitt,” Lena privately assures Roxie that the choice of where to die is hers, while tactfully nudging Paul to give Roxie the space to decide for herself. I wondered if there had been cases when Chang found it difficult to achieve consensus.
“I’m in a case like that right now,” she said. A client whom I’ll call Esther, an eighty-five-year-old with advanced Parkinson’s, had spent the past few years living with her son, his wife, and their two young children in Manhattan. The family contacted Chang in April. Chang said, “The first thing out of her mouth was ‘I want to die. Am I eligible for MAID?’ ”—medical assistance in dying. But the requirements for MAID, which just became legal in New York, are stringent, and a person must generally have a diagnosis of six months or less to live; Esther wouldn’t qualify.
Instead, Chang suggested that Esther let time and her disease take their inevitable toll. Meanwhile, Chang would focus on improving quality of life. She worked with Esther’s children to help them develop what she called “a sustaining mind-set.” “The situation had gotten so intense,” she said. The caretakers needed to take care of themselves, too—“to not think of everything as an emergency.” But, Chang said, “I think the biggest thing that I did for them was to reframe Esther’s end-of-life experience as one of being, not doing.” Esther felt useless. She couldn’t leave the house, and even reading to her grandchildren was impossible. Chang advised her to consider her presence enough. Just being in a room with her family was salutary; the kids could read to her instead of the other way around.
Then a mass was discovered on Esther’s pancreas. Her opportunity to die had come. She declined a biopsy, and decided to start VSED, the voluntary stopping of eating and drinking, a legally protected way to speed up the dying process. At a family meeting, two of Esther’s children told Chang that their sister was wary. Their mother’s death had been abstract; now it could happen in a week or two. Chang suggested that Esther hold off on VSED, just for a bit, to give her daughter time to adjust.
Esther’s son was concerned. Was Chang asking his mother to suffer longer? “You could view it like that,” Chang recalled telling him. “But your mom is someone who has put her family at the core of her existence for such a long time, and loves each person so intensely. This is a small kindness that will save her daughter a lot of anguish and struggle.” If Esther postponed VSED, her daughter would have a chance to understand what was happening to her, and why. When Chang turned to Esther for her opinion, she gave the thumbs-up.
“This is what we have lost in the dying experience, right?” Chang said. “This feeling of family and community. We don’t all live together. We travel. We’ve developed very individualistic points of view. Maybe for some things in society that’s O.K. But, in regard to the experience of death and dying, it’s taken something away.” She went on, “If this daughter gets a good end-of-life experience for her mom, it will change her whole point of view of what death and dying could be, and it will change what she wants for herself and what she wants for all of her loved ones. I can make her a ripple in the positive-death movement—in making it better for everyone.”
Lately, the ripples have been getting bigger. Ironically, in Hollywood, the land of eternal youth, end-of-life-doula training has become newly fashionable in the way that studying Kabbalah once was. In January, while promoting “Hamnet,” a film that centers on the grisly demise of a sixteenth-century child, the director Chloé Zhao told an interviewer that she was becoming an end-of-life doula in order to confront her fear of dying. A few months later, Nicole Kidman announced that the death of her mother had inspired her to train as a doula, too. Kidman framed her interest as a matter of personal growth. “I am looking to expand myself,” she said. This did not stop people from imagining what it might be like to shuffle off their mortal coils while being ministered to by a world-famous movie star. “If I am at my deathbed and she comes at me with a Russian accent and psilocybin, I am all for it,” one Redditor commented.
The death-doula field is unregulated—you don’t need to be certified to practice—and most doulas prefer it that way. “I love that we’re a little bit of a rogue band of people,” Kelly Briggs-Hayler, a New York-based doula, told me. Still, the lack of standardization can breed confusion, and some doulas have taken it upon themselves to do quality control. Every two months, a doula named Emma Acker hosts a meetup for her fellow-practitioners and apprentices at Sparrow, a self-described “contemporary” funeral home in the Greenpoint neighborhood of Brooklyn. On a recent evening, a circle of twenty chairs was arranged in a room outfitted with light pine floors and Edison-bulbed chandeliers. The doulas browsed a buffet table loaded with wine, seltzer, charcuterie, and pesto-dressed orecchiette, chatting until Acker called them to order.
“Wow, it’s such a large group—that’s awesome!” she said. Acker has a spray of graying corkscrew curls and, though she has lived in New York for more than thirty years, the accent of her native New Zealand. She started the meetup three years ago to serve as an ad-hoc professional network. “This space is truly gatekept, for lack of a better word, by me,” she said. “We only allow people to come if they’ve done a death-doula training. Wherever you’re at with it, it doesn’t matter. But you’re not shopping to see if you want to do that. You’ve done it, and now you’re finding your way after.”
The doulas were white, Black, Asian, young, and middle-aged; one was old. All but two were women. Acker invited them to introduce themselves to the group. Robin had been working as a death doula and an ecopsychologist since 2022, and ran a group called the Dead Parents Club. Erika used text-to-speech software to say that she did art-based grief support. Simone trained in Sweden, and had just had her first client. Marianne was a licensed clinical social worker at a children’s hospital, where she cared for dying kids. Alexa came from “a social-impact background in tech” and wrote a Substack called “Mourning People.” Ryan found his way to the death world after his husband died of cholangiocarcinoma, a rare cancer of the bile ducts, and was volunteering as a doula at Mount Sinai’s palliative-care program. Boshko confessed that he was not a doula—the room broke into hoots of laughter—but he did provide Reiki at memory-care facilities around the city.
Sula, a blond woman in her early forties, ran a doula service called Peacing Out. “Honestly, I’m bad at joining groups,” she said. “I’m bad at social media. So I feel a little fucked in the ways that I’m connecting or not with community in this world, and one of the biggest questions I have is, like, how do we actually make a living doing this?” She had turned to doula work full time after being laid off from her job in communications, but the numbers weren’t adding up. She went on, “While I’m very pleased that the field has expanded, I’m also, like, Let’s get talking about our labor. I don’t want to do anything else, and I also need to survive.”
“I love this topic,” Acker said. The question of making a living as an end-of-life doula can be touchy. Some doulas get more calls than they can handle, but they are in the minority. Others provide their service gratis, from the conviction that it should be accessible to all, or on a sliding scale. Jill Schock offers three packages, starting at $1,799 and going to $2,999, plus an assortment of à-la-carte options: funeral support and planning cost $225; helping a client who is dying by MAID is $1,600. Schock doesn’t live off her client work alone—she supplements her income by teaching a virtual doula-training course—but she’s optimistic. “I’m sorry, but, if Labubus can sell, we can sell this service,” she told me.
Acker works on what she calls a “Toms Shoes model”: the paying clients she sees allow her to take on others who can’t afford her services. One afternoon in June, I went with her to visit a sixty-seven-year-old man, whom I’ll call Lee, who falls into the latter category. Acker met Lee a few years ago, at All Angels’ Church, on the Upper West Side, where she volunteers weekly, manning its coffee stand. Lee would swoop in dashingly on his bike to grab a cup; he himself spent time volunteering in the kitchen. But his health had been failing: chronic arthritis, mobility problems, a bike accident. Acker had started a project at All Angels’ to help unhoused and other vulnerable people get health-care proxies, and she became Lee’s. “He’s very proud—he used to be the guy who helps everyone,” she said. Now he was staying at a nursing home on the Upper West Side. “He really wants to get out,” Acker said, but the chances of that were slim.
Lee was in a hospital bed, separated from a roommate by a yellow curtain. He was missing a number of teeth, and the fingers of his right hand were stiff and curled. Blue and orange “Happy Birthday” balloons dragged on the floor, out of air. Acker had brought two large deli coffees, and Lee sipped his from a straw. She sat on the corner of his bed and asked how he was.
“Listen, Emma,” Lee said. His voice was very weak. “They don’t take care of me here. I would feel better at home.”
“You would feel better at home,” Acker repeated.
“I’ve been thinking,” he said, pointing to one bushy eyebrow.
“Thinking is a good thing to do,” Acker said. They laughed.
Just what Lee was thinking was drowned out by a TV mounted in the corner, blaring the news of the day, but the gist was clear. After the visit, Acker said, “He wants me to sign him out.” He had pleaded his case with great intensity, but Acker wouldn’t do it. Lee’s Section 8 apartment in the Bronx was up many flights of stairs that he could not walk. “Because you’re here, I see myself from the outside, and I see how hopeless it is,” Acker told me. Lee wasn’t actively dying, but he wasn’t getting well, either. His former life had ended, and that was a sort of death, too, one to which he was not reconciled. Acker went on, “At the same time, I know the value of at least having somebody. I’m not fixing what’s happening, at all. But I’m not turning away.”
Eleanor didn’t decline. In fact, she improved. The next week, when Chang returned, she was back to her lucid self. In her dark days of confusion, she had injured herself while fighting to get out of bed. White gauze bandages were wrapped around her ankles, and her elbows and left knee were bruised. “This kind of old age is unfair,” she said. She felt like a member of “the living dead.”
“Eleanor, you don’t give yourself enough credit,” Chang said. “You’re pretty amazing for a one-hundred- and-one-year-old.”
“It’s just a number!” Eleanor said, but she smiled with pleasure.
“How old do you feel?”
“Two hundred—and fifty.”
Chang fished through her bag and produced a copy of “The Brain: The Story of You,” by the neuroscientist David Eagleman, which she had been reading aloud during their visits. “That’s our special time together now,” Eleanor said. She had become fascinated with the brain after Chang suggested that she donate hers to science as a legacy project—a contribution that a dying person can make to the future. Such projects usually consist of activities like writing letters to one’s children or making a quilt, not organ donation, but Eleanor had been thrilled by the idea. An undemented brain of her vintage was a hot commodity in research circles. “I thank her for it all the time, because I finally found something I could do that’s fruitful,” Eleanor said.
Chang began to read. They had already been through the brain’s development during childhood. Now they were in the teen-age years—the excruciating social awkwardness and emotional sensitivity owing to a still unfinished prefrontal cortex. “Next time, we’ll talk about adulthood,” Chang said. “There are some interesting topics coming up, such as the fallibility of memory and the aging brain.”
“I don’t know if this science topic is going to focus on exactly what I’m hoping to find out, because that’s too mysterious,” Eleanor said. “But I’ll give it a try, because it would be helpful for me to understand more about myself.”
“I’m glad that you’re still curious.”
“I often wonder why I am. I keep saying that to myself—‘Why are you caring so much about the political problem for the future? You’re not going to be involved in it.’ ” What Eleanor wanted to find out, though, was personal. She was wondering about her children, who were in their seventies. She’d had a wonderful marriage, but motherhood was difficult. Why were her children not who she had thought they would be? Why did they have such different values than she did? “What I’m looking for is probably so technical that I maybe would never be able to understand it without any background in science,” she said.
“But maybe your brain will contribute to an answer one day.”
“Good. I have that hope. She’s the one that builds up the hopes.”
“Eleanor, I have some news to tell you,” Chang said. “I’m actually going to be away for three weeks.” She was off to complete her second book on facing death.
“Oh, really? Well, this is an eternity I’m serving here. Three weeks is nothing.”
“So when I come back we’ll finish the book. But—I understand that things can happen, as well. It has been such an honor to work with you.”
“It’s been a pleasure. You’ve added something to this end-of-life thing which wasn’t there before. That’s mighty useful. Mighty useful.”
Chang leaned over the chair where Eleanor sat and embraced her. They both held on for a long time. Gently, Chang broke away. She kissed Eleanor on the cheek.
“O.K.?”
“O.K.”
“As soon as I get back, I will call. O.K.? Three weeks.” She stood up to go.
“And thank you for being there.”
“O.K. All right, Eleanor,” Chang said quietly, and left the room. ♦