THE UNWINDING OF THE MIRACLE
A Memoir of Life, Death, and Everything That Comes After
By Julie Yip-Williams
Julie Yip-Williams
By Lori Gottlieb
When we meet Julie Yip-Williams at the beginning of “The Unwinding of the Miracle,” her eloquent, gutting and at times disarmingly funny memoir, she has already died, having succumbed to colon cancer in March 2018 at the age of 42, leaving behind her husband and two young daughters. And so she joins the recent spate of debuts from dead authors, including Paul Kalanithi and Nina Riggs, who also documented their early demises. We might be tempted to assume that these books were written mostly for the writers themselves, as a way to make sense of a frightening diagnosis and uncertain future; or for their families, as a legacy of sorts, in order to be known more fully while alive and kept in mind once they were gone.
By dint of being published, though, they were also written for us — strangers looking in from the outside. From our seemingly safe vantage point, we’re granted the privilege of witnessing a life-altering experience while knowing that we have the luxury of time. We can set the book down and mindlessly scroll through Twitter, defer our dreams for another year or worry about repairing a rift later, because our paths are different.
Except that’s not entirely true. Life has a 100 percent mortality rate; each of us will die, and most of us have no idea when. Therefore, Yip-Williams tells us, she has set out to write an “exhortation” to us in our complacency: “Live while you’re living, friends.”
Before her diagnosis in 2013, Yip-Williams had done more than her share of living. It was, indeed, something of a miracle that she was alive at age 37 when she traveled to a family wedding and ended up in the hospital where she received her cancer diagnosis. Born poor and blind to Chinese parents in postwar Vietnam, she was sentenced to death by her paternal grandmother, who believed that her disability would bring shame to the family and render her an unmarriageable burden. But when her parents brought her to an herbalist and asked him to euthanize her, he refused.
The family would eventually survive a dangerous escape on a sinking boat to Hong Kong, and less than a year later make their way to the United States, where at 4 years old, Yip-Williams had a surgery that granted her some vision, if not enough to drive or read a menu without a magnifying glass.
She would go on to defy her family’s expectations, eventually graduating from Harvard Law School, traveling the world solo and working at a prestigious law firm where she meets Josh, the love of her life. She becomes a mother and, soon after, a cancer patient, and soon after that, because of this unfortunate circumstance, a magnificent writer.
During the five years from her diagnosis to her death, we enter her world in the most intimate way as she cycles through Elisabeth Kübler-Ross’s famous stages of grieving: denial, anger, bargaining, depression and acceptance. Describing the ways in which terminally ill patients cope with their own deaths, these stages weren’t meant to delineate a neat sequential progression but rather the various emotional states a dying person might visit, leave and visit again.
Yip-Williams toggles between optimism and despair, between believing she’ll defy the statistics as she had so many times in her life — “odds are not prophecy” — and trying to persuade her husband to confront their harrowing reality. She makes bargains with God, just as she did as a young girl when, in exchange for her poor vision, she asked for a soul mate one day. (“God accepted my deal!”) She posts pictures of contented normalcy on Facebook — of meals cooked, a car purchased — but rages at her husband, healthy people, the universe and, silently, at the moms at a birthday party who ask how she’s doing. “Oh, fine. Just hanging in there,” she replies, while wanting to scream: “I didn’t deserve this! My children didn’t deserve this!” She frets about the “Slutty Second Wife” her husband will one day marry and the pain her daughters will experience in her absence. And, near the end, she oscillates between being game to try every possible treatment and accepting that nothing will keep her alive.
“Paradoxes abound in life,” Yip-Williams writes in a heart-rending letter to her daughters; she asks us to confront these paradoxes with her head-on. One of the paradoxes of this book is that Yip-Williams writes with such vibrancy and electricity even as she is dying. She moves seamlessly from an incisive description of her mother as “the type of woman who sucks blame and guilt into herself through a giant straw,” to the gallows humor of “Nothing says ‘commitment to living’ quite like taking out a mortgage,” to the keen observation “Health is wasted on the healthy, and life is wasted on the living.” Unlike the woman in her support group who, after being given a terminal prognosis, defiantly declares, “Dying is not an option,” Yip-Williams prepares meticulously for her death while paying close attention to the life she will one day miss: “the simple ritual of loading and unloading the dishwasher. … making Costco runs. … watching TV with Josh. … taking my kids to school.”
This memoir is so many things — a triumphant tale of a blind immigrant, a remarkable philosophical treatise and a call to arms to pay attention to the limited time we have on this earth. But at its core, it’s an exquisitely moving portrait of the daily stuff of life: family secrets and family ties, marriage and its limitlessness and limitations, wild and unbounded parental love and, ultimately, the graceful recognition of what we can’t — and can — control.
“We control the effort we have put into living,” Yip-Williams writes, and the effort she has put into it is palpable. Of all the reasons we’re drawn to these memoirs, perhaps we read them most for this: They remind us to put in our own effort. It would be nearly impossible to read this book and not take her exhortation seriously.
Five minutes. That is all I had to make my case: to convince this 80-year-old man to fill out an advanced care directive. John, as I’ll call him, had served in the military for over thirty years, risking life and limb for his country. Many times he came close to death, suffering fractures and blast injuries and witnessing the raw, unfiltered trials of war. He retired as soon as his pension kicked in, and hadn’t worked in over 25 years.
Neither had he paid much attention to his health. Once, he had a loving wife and two children, and was concerned with his body—how it would hold up to the wear and tear of aging. But his wife had passed away ten years earlier, and his children were now estranged. John lived alone in his house, lonely and unemployed. And so his hypertension, coronary artery disease, and chronic kidney disease no longer delivered the same existential fright. All John wanted to do was sit in his home, away from others. And that is what he did.
Then, two months prior to our meeting, he was hospitalized with pneumonia. Weeks later, he was hospitalized again. And again. And a fourth time in two months, despite a week-long stay involving critical care and mechanical ventilation just days beforehand. He was running a fever, and his breath was labored. He lost his appetite and control of his bowels. The combination left John nutritionally shortchanged, and his medical team was forced to place a feeding tube directly into John’s stomach, passing straight through his abdominal wall.
Yet for all this treatment, John’s prognosis wasn’t looking any brighter. Lab tests returned with clear signs of malnutrition and vitamin deficiencies; they also suggested possible liver disease. And while John passed his cognitive exams, he was diagnosed with mild depression. But all he could tell the medical staff was how he had “been through so much worse”—and how he just wanted to go home, get away from the beeping and humming hospital, and be done with it.
Three minutes. All these facts and histories left me with one general, almost blanketed feeling: John was not going to live much longer. If John really wanted to go home, if there was really some way in which we could do right by him, we had to act now.
I was sitting face-to-face with the man. It was as if his tired, tumultuous medical history—like some solemn but unexpected musical score—was playing before me with a surprising timbre. One might have thought that this military man would want to fight, would need to fight—but the opposite was true. He was just plain tired. Tired of the hospital, tired of the doctors, tired of the medications, tired of the tubes in various orifices, natural and artificial. John just wanted to go home.
Ninety seconds. I had spent most of the conversation probing John’s mind, trying to find what mattered to him. I asked him what his understanding of his illness was. I asked him what concerns he had. I tried to uncover his goals, his priorities. Then: which outcomes were unacceptable? Which compromises seemed favorable? And ultimately, what did a good day look like?
Forty-five seconds. John had answered all my questions. Yet I realized that, for all my probing, I was still beating around the bush. John was probably not going to live much longer; and if we didn’t take initiative, he might live the rest of his life bouncing in and out of hospitals—a prospect he abhorred.
But how could I ensure that John wouldn’t return to the hospital for treatment he didn’t want? Thirty seconds. The answer was simple, stupefying: an advanced directive. With John’s advanced age and complex medical history, he needed something to explicitly convey all that he had just told me. His concerns, his goals, what was unacceptable, what could be compromised: if these were written down, John would stand a markedly better shot of living—and yes, dying—on his own terms. So I spent the last half-minute of our conversation describing the advanced directive form, highlighting its purpose and importance. He seemed uncertain, suspicious at first. Was I telling him that he would die? But he soon realized that, in reality, this form was not about his death. It was about his life, and what he did and did not want if something were to happen to that life. I saw a spark of change flicker across his eyes, as he looked down at the form I had handed him.
Then time was up, and John—the 80-year-old war veteran, the man with pneumonia and cardiovascular disease—transformed into a young, presumably healthy woman, as the two of us chuckled at the change. But what had just transpired was not fiction—not quite, at least. What had transpired was the enactment of a timely, crucial endeavor for our modern healthcare system.
Since the start of the new year, I’ve been participating in a weekly seminar at Stanford’s medical school, focused on difficult conversations surrounding serious illness. My motivations are simple: as a future physician, I face countless difficult conversations ahead, many of which will reveal my profound incapacity to guide another human being through the sufferings that they, and not I, experience. That is—I will be incapable, if I don’t come prepared.
So I was excited for the seminar’s second session, held a few weeks ago, on advanced care directives. On their surface, advanced directives are quite simple: legal documents dictating how a person’s health care decisions should be made, if that person becomes incapable of making those decisions. But what sorts of decisions are specified? How does one fill this document out? And what role do healthcare professionals have in the process?
The questions pulsed through my mind as I spoke with “John”—a character, essentially, played by a classmate who had read a fictional case report before class. (The case, nonetheless, was based on actual patients.) My job, playing the role of medical professional, was to help John understand his situation, his fears, his desires. That’s it. Even though we had spent the first half of class learning about advanced directives—their benefits and shortfalls—I was under no agenda to push this document in his face. Or at least that’s what I thought.
When I actually got to speaking with John—portrayed in Oscar-worthy fashion—I realized that I could not separate his situation, his fears, his desires, from the value of an advanced directive. As many families already know, things become messy at the end of life. Questions abound about the intensity of treatment, the continuation or refusal of care, the proper setting for one’s last days. These questions can be difficult for patients themselves; even those who have plenty of time to think. Now imagine a family, deciding in a split second whether or not the medical team should resuscitate their 80-year-old grandfather (or whoever it may be), without any prior guidance. Or, think about someone bouncing between home and hospital for the last few months of their lives. Assuming they were cognizant enough to be aware of the situation, what would they think?
They might hate their last days. Or, they might want things that way. This is the exact problem: without advanced directives, we simply don’t know. So when I read through John’s case before class, and when I met the “real” person before me, I couldn’t get these documents off my mind.
But what are these documents? For all the largeness and complexity of life and death, advanced directives are rather simple. Though a wide variety of different forms exist, two components are almost always included: the Durable Power of Attorney for Health Care (DPAHC), and the “living will.” In the DPAHC section, one lists an individual (and alternates) to make one’s medical decisions in the scenario that one is no longer capable of doing so. The “living will” section complements the DPAHC, providing specific instructions for things like prolonging (or not prolonging) life, and when (if ever) pain-relieving medication should be withheld. There is usually room in this section for “other wishes”—for example, the wish that one never be intubated. In the form used for class (which is also the form used in Stanford Hospital), sections followed pertaining to organ donation, designation of a primary physician, and witness statements. The entire document was only 5 generously-spaced pages, and there was no jargon. In the first half of class, I filled out my own advanced directive in fifteen minutes.
The form is valuable and simple. But there are still problems to overcome. For one thing, a recent study found that only 37 percent of Americans currently have advanced directives. This is in spite of a resurgent national conversation on end-of-life care, and new Medicare reimbursement for physicians who provide advance-care counseling. And while older adults are more likely to have advanced directives (particularly those in hospice care), no demographic has even approached comprehensive advance-care planning. Americans with chronic illness, for instance, have a 38.2 percent advanced directive completion rate—compared to 32.7 percent in healthy individuals. As one physician told Reuters, “The fact that only a third of sick patients are expressing their end-of-life wishes means we’re in trouble.”
There is clearly some gap, some pitfall, which has stifled the full potential of advanced directives. And as I learned while talking to “John,” that pitfall sometimes sits right in the middle of the doctor’s office.
Even after a lecture on advanced directives, I had struggled to communicate the relevance of these documents to a tired and cynical man. (Even if he was, in reality, a driven young woman.) I found myself struggling with his worries: that this form would take away his independence, that he was signing up to die. But thankfully, these same worries provided a key entryway to John’s desires and values. For advanced directives are, in truth, a declaration of one’s independence. They can be changed or revoked at any time, and superseded by a patient’s spoken or written word. The DPAHC can be restricted to certain decisions, allowing the patient final say in others. If this hypothetical man was tired of the hospital, burdened by the strangeness and beeping of intensive medical care, the advanced directive was one way to reclaim control.
The five minutes of role-play ended with a debriefing between my classmate and I. We chuckled over our thespian shortcomings, and the awkward unnaturalness of the first few minutes. But the lessons learned were no joking matter. We were both future physicians, preparing to serve an aging population—most of which had not thoroughly planned for the end of life. One document was not going to solve this problem, but it was a good place to start. The implications were thus clear as the seminar ended and we waddled off to lunch. My classmates and I would have to understand these forms, understand how we might talk about them with patients of all ages and activity levels. We would have to understand the rhythms of inpatient and outpatient care—how and when one might talk to patients about these forms. But most of all we would have to understand people, their goals, their fears, and what matters to them.
We will have much longer than five minutes to prepare. But our duty is urgent, and we must learn to make our case.
If someone you love has died in a hospital, you may have seen modern death at its worst: overly medicalized, impersonal, and filled with unnecessary suffering. The experience can be a bitter lesson in Buddha’s most basic teaching: the more we try to avoid suffering (including death), the worse we often make it.
Even though roughly half of Americans die in hospitals and other institutions, most of us yearn to die at home, and perhaps to experience our leavetaking as a sacred rite of passage rather than a technological flail. You don’t have to be a saint, or be wealthy, or have a Rolodex of influential names to die well. But you do need to prepare. It helps to be a member of at least one “tribe,” to have someone who cares deeply about you, and to have doctors who tell you necessary truths so that you can decide when to stop aggressive treatment and opt for hospice care. Then those who care for you can arrange the basics: privacy, cleanliness, and quiet, the removal of beeping technologies, and adequate pain control. They can listen and express their love, and provide the hands-on bedside care hospice doesn’t cover.
From then on, a more realistic hope for our caregivers, and for ourselves when we are dying, may not be an idealized “good death” by a well-behaved patient, but a “good enough death,” where we keep the dying as comfortable and pain-free as possible, and leave room for the beautiful and the transcendent—which may or may not occur.
Hospice professionals often warn against high expectations. Things will probably not go as planned, and there comes a point when radical acceptance is far more important than goal-oriented activity. They don’t like the idea, inherent in some notions of the “good death,” of expecting the dying to put on a final ritual performance for the living, one marked by beautiful last words, final reconciliations, philosophical acceptance of the coming of death, lack of fear, and a peaceful letting go.
“In It Together” by Nancy Borowick. Nancy Borowick’s photo series (January 2013 through December 2014) depicts the experiences of Howie and Laurel Borowick, partners for over 30 years, who found their lives consumed by doctor appointments and the shared challenges of chemotherapy.“The Calm before the Storm”“His and Hers”
“I don’t tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories,” said hospice nurse Jerry Soucy. “I say instead that we’re going to do all we can to make the best of a difficult situation, because that’s what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.” This is what it took, and how it looked, for the family of John Masterson.
John was an artist and sign painter, the ninth of ten children born to a devout Catholic couple in Davenport, Iowa. His mother died when he was 8, and he and two of his sisters spent nearly a year in an orphanage. He moved to Seattle in his twenties, earned a black belt in karate, started a sign-painting business, and converted to Nichiren Shoshu, the branch of Buddhism whose primary practice is chanting. He never left his house without intoning three times in Japanese Nam Myoho Renge Kyo (“I Honor the Impeccable Teachings of the Lotus Sutra”).
He was 57 and living alone, without health insurance, when he developed multiple myeloma, an incurable blood cancer. He didn’t have much money: he was the kind of person who would spend hours teaching a fellow artist how to apply gold leaf, while falling behind on his paid work. But thanks to his large extended family, his karate practice, and his fierce dedication to his religion, he was part of several tribes. He was devoted to his three children—each the result of a serious relationship with a different woman—and they loved him equally fiercely. His youngest sister, Anne, a nurse who had followed him to Seattle, said he had “an uncanny ability to piss people off but make them love him loyally forever.”
When he first started feeling exhausted and looking gaunt, John tried to cure himself with herbs and chanting. By the time Anne got him to a doctor, he had a tumor the size of a half grapefruit protruding from his breastbone. Myeloma is sometimes called a “smoldering” cancer, because it can lie dormant for years. By the time John’s was diagnosed, his was in flames.
Huge plasma cells were piling up in his bone marrow, while other rogue blood cells dissolved bone and dumped calcium into his bloodstream, damaging his kidneys and brain function. He grew too weak and confused to work or drive. Bills piled up and his house fell into foreclosure. Anne, who worked the evening shift at a local hospital, moved him into her house and drove him to various government offices to apply for food stamps, Social Security Disability, and Medicaid. She would frequently get up early to stand in line outside social services offices with his paperwork in a portable plastic file box.
Medicaid paid for the drug thalidomide, which cleared the calcium from John’s bloodstream and helped his brain and kidneys recover. A blood cancer specialist at the University of Washington Medical Center told him that a bone marrow transplant might buy him time, perhaps even years. But myeloma eventually returns; the transplant doesn’t cure it. The treatment would temporarily destroy his immune system, could kill him, and would require weeks of recovery in sterile isolation. John decided against it, and was equally adamant that he’d never go on dialysis.
After six months on thalidomide, John recovered enough to move into a government-subsidized studio apartment near Pike Place Market. He loved being on his own again and wandered the market making videos of street musicians, which he’d post on Facebook. But Anne now had to drive across town to shop, cook, and clean for him.
The health plateau lasted more than a year. But by the fall of 2010, John could no longer bear one of thalidomide’s most difficult side effects, agonizing neuropathic foot pain. When he stopped taking the drug, he knew that calcium would once again build up in his bloodstream, and that he was turning toward his death.
An older sister and brother flew out from Iowa to help Anne care for him. One sibling would spend the night, and another, or John’s oldest daughter, Keely, a law student, would spend the day.
Christmas came and went. His sister Irene returned to Iowa and was replaced by another Iowa sister, Dottie, a devout Catholic. In early January, John developed a urinary tract infection and became severely constipated and unable to pee. Anne took him to the University of Washington Medical Center for what turned out to be the last time. His kidneys were failing and his bones so eaten away by disease that when he sneezed, he broke several ribs. Before he left the hospital, John met with a hematologist, a blood specialist, who asked Anne to step briefly out of the room.
Anne does not know exactly what was said. But most UW doctors are well trained in difficult conversations, thanks to a morally responsible institutional culture on end-of-life issues. Doctors at UW do not simply present patients with retail options, like items on a menu, and expect them to blindly pick. Its doctors believe they have an obligation to use their clinical experience to act in their patients’ best interests, and they are not afraid of making frank recommendations against futile and painful end-of-life treatments. When the meeting was over, the doctor told Anne that her brother “wanted to let nature take its course.” He would enroll in hospice. Anne drove him home.
John knew he was dying. He told Anne that he wanted to “feel everything” about the process, even the pain. He took what she called “this Buddhist perspective that if he suffered he would wipe out his bad karma. I said, ‘Nah, that’s just bullshit. You’ve done nothing wrong. The idea that we’re sinners or have to suffer is ludicrous.’” She looked her brother in the eye. She knew she was going to be dispensing his medications when he no longer could, and she wasn’t going to let him suffer. She told him, ‘You’re not going to have a choice.’”
The drive to treatment takes half an hour, and Howie and Laurel Borowick take turns, resting and driving, depending on who’s getting treatment that day. “The Drive to Chemo”In Laurel’s final moments, her family assured her that all would be OK. “Last Touch”
Anne said she “set an intention”: not to resist her brother’s dying, but to give him the most gentle death possible and to just let things unfold. On January 15, her birthday, she and John and a gaggle of other family members walked down to Pike Place Market to get a coffee and celebrate. John was barely able to walk: Anne kept close to him so that she could grab him if he fell. It was the last time he left the house.
The next morning, a Sunday, while Anne was sitting with John at his worktable, he looked out the window and asked her, “Do you think I’ll die today?” Anne said, “Well, Sundays are good days to die, but no, I don’t think it’s today.” It was the last fully coherent conversation she had with him.
He spent most of his last nine days in bed, as his kidneys failed and he grew increasingly confused. He didn’t seem afraid, but he was sometimes grumpy. He had increasing difficulty finding words and craved celery, which he called “the green thing.” He would ask Anne to take him to the bathroom, and then forget what he was supposed to do there. His daughter Keely took a leave of absence from law school, and Anne did the same from her job at the hospital. Fellow artists, fellow chanters, former students to whom he’d taught karate, nephews, nieces, and sign-painting clients visited, and Anne would prop him up on pillows to greet them.
Anne managed things, but with a light hand. She didn’t vet visitors, and they came at all hours. If she needed to change his sheets or turn him, she would ask whoever was there to help her, and show them how. That way, she knew that other people were capable of caring for him when she wasn’t there. “The ones that have the hardest time [with death] wring their hands and think they don’t know what to do,” she said. “But we do know what to do. Just think: If it were my body, what would I want? One of the worst things, when we’re grieving, is the sense that I didn’t do enough,” she said. “But if you get in and help, you won’t have that sense of helplessness.”
Each day John ate and spoke less and slept more, until he lost consciousness and stopped speaking entirely. To keep him from developing bedsores, Anne would turn him from one side to the other every two hours, change his diaper if necessary, and clean him, with the help of whoever was in the room. He’d groan when she moved him, so about a half an hour beforehand, she’d crush morphine and Ativan pills, mix them with water as the hospice nurse had showed her, and drip them into John’s mouth.
One morning her distraught brother Steve accused her of “killing” John by giving him too much morphine—a common fear among relatives, who sometimes can’t bear to up the dose as pain gets worse. At that moment, the hospice nurse arrived by chance, and calmly and gently explained to Steve, “Your brother is dying, and this is what dying looks like.”
The death was communal. People flowed in and out, night and day, talking of what they loved about John and things that annoyed them, bringing food, flowers, candles, and photographs until John’s worktable looked like a crowded altar. Buddhists lit incense and chanted. Someone set up a phone tree, someone else made arrangements with a funeral home, and one of the Buddhists planned the memorial service.
Most of the organizing, however, fell to Anne. It may take a village to die well, but it also takes one strong person willing to take ownership—the human equivalent of the central pole holding up a circus tent. In the final two weeks, she was in almost superhuman motion. She leaned in, she said, “into an element of the universe that knows more than I know. I was making it up as I went along. People contributed and it became very rich.
“That’s not to say there weren’t times when it was phenomenally stressful. I was dealing with all the logistics, and with my own mixed emotions about my brother. I was flooded with memories of our very complicated relationship, and at the same time I knew my intention was that he be laid to rest in the most gentle way possible.”
Hospice was a quiet support in the background. Over the two years of his illness, John’s care had perfectly integrated the medical and the practical, shifting seamlessly from prolonging his life and improving his functioning— as thalidomide and the doctors at UW had done—to relieving his suffering and attending his dying, as the hospice nurses and those who loved him had done.
There were no demons under the bed or angels above the headboard. Nor were there beeping monitors and high-tech machines. His dying was labor-intensive, as are most home deaths, and it was not without conflict.
A few days before he died, two siblings beseeched Anne to call a priest to give John last rites in the Catholic church. “It was a point of love for my siblings. They were concerned that John was going to burn in hell,” Anne said. “But John hated priests.” In tears, Anne called the Seattle church that handled such requests, and the priest, after a brief conversation, asked her to put her sister Dottie on the phone. Yes, Dottie acknowledged, John was a Buddhist. No, he hadn’t requested the sacraments. Yes, his children were adamantly opposed. No, the priest told her, under the circumstances he couldn’t come. It wasn’t John’s wish.
Ten days after the family’s last walk through Pike Place Market, the hospice nurse examined John early one morning and said, “He won’t be here tomorrow.” She was seeing incontrovertible physical signs: John’s lips and fingertips were blue and mottled. He hadn’t opened his eyes in days. His breathing was labored and irregular, but still oddly rhythmic, and he looked peaceful. The hospice nurse left. Anne, helped by John’s daughter Keely and his sister Dottie, washed and turned John and gave him his meds. Then they sat by his side. Anne had her hand on his lap.
“It was January in Seattle,” Anne said. “The sun was coming through the window and we could hear the market below beginning to wake up. We were just the three of us, talking and sharing our stories about him and the things we loved and didn’t love, the things that had pissed us off but now we laughed about. I can’t ever, in words, express the sweetness of that moment.
“He just had this one-room apartment with a little half-wall before the kitchen. I walked over to put water on to make coffee, and Keely said, ‘His breathing’s changed.’”Anne stopped, ran over, sat on the bed, and lifted her brother to a sitting position. He was light. She held him close, and during his last three breaths she chanted Nam Myoho Renge Kyo, as her brother had always done, three times, whenever he left his house. “I was really almost mouth-to-mouth chanting, and he died in my arms,” she said. “We just held him, and then my sister Dottie said her prayers over him.”
Anne sat next to her brother and said, “John, I did well.”
“I know he would not have been able to orchestrate it any better than how it unfolded,” she said.
“It was a profound experience for me. I realized what a good death could be.”
I was 33 when I decided to plan my funeral. I was healthy, and I would describe myself as a glass-half-full kind of person. In other words, I’m not morbid, and I don’t have a death wish.
But over the years, the thought of my own funeral constantly popped up in my mind. Who would turn up? What music would be playing? And — with a good degree of narcissism — which ex-lover overwhelmed with grief would be lingering in the back pews? While friends planned their weddings, I had a different milestone that I wanted to plan for: the end of my life.
The more I started to think about the funeral, the more I wondered how my funeral might play out outside of my daydreams, given I wouldn’t be there to orchestrate it. If I were to die, how would my family know whom to invite? And as an eco-vegetarian, would my funeral reflect the principles I’d lived by? It dawned on me that my final soiree might actually be my own worst kind of party, with me wanting to jump out of the coffin and scream, “FFS, James Blunt?” as “You’re Beautiful” played softly in the background and everyone quietly wept into plates of frozen, beige party food.
One day, I read about Louise Winter – an editor turned funeral planner – online. According to her website, Winter founded Poetic Endings, a business dedicated to creating bespoke funerals, ensuring that send-offs could be stylish, meaningful and unique. I was intrigued. Could she help me plot out my big day?
I met Louise at The House of Saint Barnabas in Soho in London. Over a pot of green tea, she gently asked about my experience attending funerals. The funerals I’d attended were quite traditional and stuffy — black limousines, black clothes, and mostly somber, never really reflecting the spirit of the person who’d died.
Then, Winter quizzed me about every aspect of my future funeral. Would I like to be buried or cremated? What I would like to be dressed in? Did I want to be embalmed? She explained that funerals didn’t always have to be held in a church, as I’d previously assumed. She also enlightened me on things I never knew, including the fact that I didn’t have to have my funeral in a church, and that it’s actually more environmentally-friendly to have a woodland burial than a cremation.
The cost of Louise’s services came to just under $400. For that, I got three hours of what is essentially event planning, guided by an industry expert. Following the one-to-one, Louise sent me a document which outlined the practical arrangements of my funeral such as keeping my body in a natural state and making sure people wear whatever clothes they want — color is encouraged. The document, which Louise sent to me, is a loose plan of how I’d like my big day to pan out. It can be updated by me at any time, and I’m not legally bound to any of it.
I decided on a candle-lit service in a historical house in London, where friends and family will be welcomed with glasses of Champagne for during the service and be encouraged to stand up and share anecdotes (note to friends: be funny). The after party is set to be in the same venue or a nearby pub, with guests encouraged to bring a vegetarian dish for a huge buffet. Other requirements include no embalming, a bamboo coffin, and a woodland burial near my parents’ home, complete with a tree planted nearby.
I get that it all sounds a little bit…intense. However, I’m not the only one preparing their funeral.
Over the past decade, there’s also been increased interest in dedicated spaces where people can discuss death and grief. For example, more than seven thousand Death Cafes, where strangers are encouraged to talk about death over tea and cake have been held across 68 countries since the social network was founded in 2011.
“When it comes to end-of-life planning and our relationship to death and dying, avoidance doesn’t work; it doesn’t prevent a person from dying, but it may prevent them from dying a good death,” says Lennon Flowers, co-founder and executive director of The Dinner Party, which encourages those who experienced loss to join others for a meal.
The rising societal urge to speak up about death and celebrate life has led to Reimagine, a non-profit which hosts events in San Francisco and New York across spaces ranging from hospitals to comedy clubs. “By bringing death out of the shadows and repurposing public spaces where all types of people are invited not just to talk about death we’ve seen a process of personal and community-wide transformation emerge,” says founder and executive director Brad Wolfe.
Amy Cunningham, owner of Brooklyn-based funeral directors Fitting Tribute Services, believes that millennials are far more aware of their own mortality — perhaps because of the current political climate and the rise of mass violence. “Death can strike at any moment,” she says. “This causes younger people to contemplate it and even get creative with what’s inevitable – as sad as that is. Young people want to break more of the old funeral rules and customs and make the funeral work for them.”
Danielle Ripley-Burgess, 35, a freelance communications consultant living in Kansas City fine-tuned her funeral plans on her own as part of her 2019 New Year’s resolutions. “I was diagnosed with colon cancer 18 years ago and I’ve thought about death a lot ever since,” she says. “Attending funeral services for friends, family and fellow cancer fighters has given me a lot of ideas.”
She describes her funeral as a “pop-music filled, colorful celebration of life full of faith-based Bible verses and songs that allude to the hope I find in death” – and with a taco bar serving up food. “When we pass away, our loved ones will be those suffering the most, yet they’ll also be tasked with handling our affairs. Making funeral plans is a small way to lighten their load,” says Ripley-Burgess.
It was following the death of her mother that motivated Alica Forneret to consider her own funeral. “I realized that there’s a lot of damn work involved with planning a funeral, especially when you’re grieving,” says Forneret, 30, from California. “I eventually realized that it was super important for me to start thinking and talking about this stuff with my family and my fiancée, because I didn’t want to put any of them in a situation where they weren’t prepared to execute on what I want done when I die.”
Forneret, a writer who now lives in Vancouver, says her funeral plans so far includes “good food” because “grieving is hard work and our bodies need to be nourished during those times” and ensuring someone tells jokes. “In short, I want my funeral to be positive and sad, to help people connect in their lives that’ll continue after I’m dead.”
“We are all going to die,” Forneret continues. “Preparing your family and friends in advance is really, really important. Then they can just ride the waves of grief without having to pick out fillings for the tiny sandwiches that’ll be served at your wake or what celebrant is going to MC your funeral.”
As for me, my environmentally-friendly and simple but stylish funeral looks set to be a beautiful and meaningful day, reflective of who I was — or rather, am. Knowing that my grieving family, doesn’t need to frantically worry about what songs I would have wanted to play, who to invite or if I wanted to be cremated means I leave knowing there’s one less headache for them. But one thing’s for sure, if it turns out to be quite the party and I’m in the heavens looking down, I’ll be absolutely gutted that I can’t be there.
It is both absolutely possible and absolutely necessary to reframe the national dialogue around death, and make it a more open and honest discussion.
By Sarah John
Sarah John
It is a well-documented fact that few topics are as taboo as death. According to Psychology Today, current American society sees death and dying “as profoundly ‘un-American’ experiences” because they force us to confront our own lack of control. In a society that prizes individualism and forging one’s own fate, the finality of death threatens the way that many Americans choose to view themselves. Normally, we choose to avoid discussing the subject. “Instead of confronting their own mortality, many Americans tend to label such talk as ‘morbid’ and try to stave it off — along with death itself — as long as they can,” author, anthropologist and Brandeis University professor Anita Hannig said.
For most Americans, there is never a good time to talk about death — and that includes the times when they or someone they know has been touched by it.
When I lost a parent, several people in my own life were extremely uncomfortable with the vulnerability that surrounds death, mourning and tragedy. Throughout that period, I felt that my job was to recover as quickly as possible from grief so as to be “normal” again as if grief was an unnatural or perhaps inconvenient process. It took time for me to realize it is neither of those things. Even today, mentioning loss can be stressful, as I worry about how best to explain my situation without “killing the mood.” In my experience, I find that most people would prefer to never think about death, even as it affects people around them.
Can we conquer our societal fear of death? Given the strong aversion most people have to the topic, I have spent some time grappling with that question.
In the end, I believe the answer is yes. It is both absolutely possible and absolutely necessary to reframe the national dialogue around death and make it a more open and honest discussion.
The first thing that is essential to understand is that our national beliefs regarding death are inextricable from a number of other issues. Our thoughts on death, widows and widowers, hospice care, national tragedy, suicide and the rights of the terminally ill are all tangled together. If we cannot discuss tragedy at an individual level, then we are also unable to discuss how to better the lives of those affected by it.
Initiatives to open up dialogue around death have already begun. In January 2011, after finishing mortuary school, Caitlin Doughty started The Order of the Good Death. The Order describes itself as “a group of funeral industry professionals, academics, and artists exploring ways to prepare a death phobic culture for their inevitable mortality.” The Order encourages creating a conversation about the topic of death, partially so people can ensure their end-of-life wishes are met. The Order also highlights the importance of legal protections for the dying and dead, and the importance of equal access for everyone to have their death rites fulfilled. We can also look to when in 2016, noticing the lack of conversation around death, Hannig designed the class “Anthropology of Death and Dying.” After taking the class, students reported numerous gains, including more respect for the elderly. One student decided to intern at a hospice over the summer. Another said the class helped her process her grief for a loved one.
Today, you can even download the WeCroak app, which sends you five daily reminders that everyone, well, croaks — so we all better choose to live well.
Death is a sad and tragic reality of life, and one that can’t be ignored. It is never something to be glorified or celebrated. But it eases death’s pain for everyone when we can, at the very least, calmly acknowledge mortality. It is true that discussing death is extremely uncomfortable in most circumstances. But living in fear of death — and isolating those that have experience with it — is a much worse fate.
Dr. Susan MacDonald reflects on ‘Leo’ and whether she should have told him about assisted death
Dr. Susan MacDonald, a palliative care doctor in St. John’s, wonders if more could have been done for her patient ‘Leo.’
By Ariana Kelland
Susan MacDonald can’t quite pick one reason why Leo sticks with her, pushing her to put pen to paper to tell the story of her patient, and how she feels she failed him.
Asked what sets Leo — a pseudonym — apart from the rest, the palliative-care doctor shakes her head and sets her gaze away, “About Leo … I think, for one, I really liked him. I just really liked him.”
The second fact, MacDonald said, is that his death — suicide by taking his own opioids for insufferable pain — was not his only option.
Medically assisted death would have allowed Leo to die without having health-care professionals standing over him in a fruitless attempt at reversing his overdose, she said.
“He was such an intensely private person and his death was so public, and it didn’t need to be that way,” MacDonald said. “There were options. It just really struck me and made me think.”
MacDonald, an associate professor of medicine and family medicine at Memorial University of Newfoundland, reflected on her patient and what she could have done differently, in an article in the Canadian Medical Association Journal, titled Leo Died The Other Day.
The patient died within the last couple of years, MacDonald said, unable to comment further due to physician–patient confidentially.
To raise — or not to raise — the option of assisted dying
For five months, she and Leo worked hard to control his intense nerve pain. But Leo’s death was inevitable. He had cancer, and by MacDonald’s estimation, had only weeks — maybe months — to live.
Whether it was the physical pain that became too unbearable or the emotional struggle of his impending death, MacDonald doesn’t know why he took his own life.
“It was a very distressing clinical case for me because I felt, at the end of the day, I hadn’t done the best I could for this particular patient,” MacDonald said.
“It was a reflective exercise for me to look back and say, ‘What could I have done better? Where are the problems? And what do we need to do about it?'”
MacDonald said she never raised medically assisted death as an option for Leo. Neither did he. But she wonders if some patients want to bring it up but can’t.
Medically assisted death in Canada is legal. However, MacDonald said, there are no strict guidelines on how a doctor should broach the topic with a patient.
Changing the way she does things
Until Leo’s death, MacDonald would wait for the patient to bring it up, but the manner in which he died has her pausing for second thought.
“There may be people like Leo, who could avail of that option if they knew about it or if it was offered to them,” she said.
“On the other hand, you have the potential to do harm by raising that question,” she said, adding doctors run the risk of offending patients by even mentioning assisted dying as a option.
Medically assisted death is legal in Canada. However, there are no strict rules guiding how physicians should broach the topic with patients.
“I’ve been doing this for 25 years now, and I still haven’t figured out always the right thing to say and the right thing to do for people.”
MacDonald hasn’t gotten many more inquires about medically assisted death since it was legalized, she said. “Not nearly as many as you’d think.”
Now, as she continues caring for those whose deaths are inescapable, she has Leo to think about.
It’s game night on the top floor of a bank building in Medford, Mass., and 25 people have divvied themselves up around the circular tables. Four women, none of whom know each other well, are seated near the snacks busily discussing their future burials.
Katie Wallace, a native of nearby Somerville, is confident she wants to be cremated. But it’s a bit more complicated for her. The urns are accumulating. “I have a room in my house where I have the ashes of six different people,” she says. “So I have to figure out what to do with all of those people.”
As a lavender dusk settles outside the floor-to-ceiling windows, the women chuckle about whether Wallace should pass this “inheritance” on to a younger relative or, perhaps, invest in a columbarium.
This isn’t just small talk. It’s part of the game. These woman and men, all of whom are older, have gathered to play a card game — one with chips, a deck of cards, and a winner and losers. But this isn’t poker or blackjack.
Question 15: What music do you want to be listening to on your last day alive?
The game, called My Gift of Grace, aims to facilitate conversations about the end of life. It’s part of a growing trend: efforts aimed at encouraging talk of death well before it is imminent. From The Conversation Project to Honoring Choices and another card game called Go Wish, all seek to find ways around the usual distaste for facing death in advance, so that people can better control the care they receive at the end.
“I think we are on the early cusp of what I hope will become a groundswell of change,” said Dr. Lachlan Forrow, director of the Ethics and Palliative Care Programs at Boston’s Beth Israel Deaconess Medical Center, in a phone interview.
The idea for this game started when The Action Mill, a Philadelphia-based design firm, was interviewing a hospice nurse, remembers Nick Jehlen, who ultimately led the game’s design team.
“She said: ‘The most important thing you could do to make my job easier would be if you could make sure that everybody who shows up for me has had one conversation about the end of their life with their family, just one.’ ”
Dr. Forrow says that having that one conversation is a lot harder than it sounds; for most people, talking about death is incredibly difficult. “It is like the biggest, existential, overwhelming, huge issue for anybody: that we are mortal.”
But Jehlen and his team weren’t deterred. They set out to make that conversation a little bit easier.
A Game About The End Of Life
The first step for the design team was thinking about everything they wanted for the end-of-life conversation: they wanted it to be done in person, with a family sitting around a table together, and everyone having a pleasant time.
A card game checked all the boxes. “Nobody gets together with their buddies to play poker just to pass some cards and some chips around,” Jehlen says. “They actually go to tell stories and share insights.”
Susanne Wilkinson, one of the women sitting with Katie Wallace in Medford, says the idea of a game about the end-of-life made her “a little dubious,” but, she says, “I am more curious to see what comes out of this.”
Wilkinson, of Somerville, is willing to withhold judgment. She believes that “as a society we haven’t done this very well yet, so I am looking for any angles that might provide some avenues.”
Jehlen and the rest of his design team had the same thought. So they designed a deck of cards with a different question printed on each card.
Question 3: Write your own epitaph in five words or less.
Question 5: If you needed help going to the bathroom today, who is the first person you would ask to help you? Who would you never be able to ask?
Question 11: In order to provide you with the best care possible, what three non-medical facts should your doctor know about you?
Question 15: What music do you want to be listening to on your last day alive?
Every person answers the questions, and the other players decide whether an answer deserves a ‘thank you chip.’ The blue poker chips are meant to express gratitude for a thoughtful answer, and it’s those chips that end up determining the winner.
Jehlen says the design team wanted everyone in the family participating. The goal was to avoid focusing solely on the one person that might be nearing the end of their life.
Wilkinson particularly appreciated this element of the game. While death can be a lonely experience, she thought “the fact that it allowed you to connect with other people makes it satisfying.”
The game also sought to focus on life as well as death, since having a good death experience is often about understanding what one values in life.
Jehlen says he struggles to capture the game in words. “The problem we always run into is explaining the game is a little bit like explaining a joke.”
But he can’t remember a My Gift of Grace game where there wasn’t laughter. Recently, he was with a group of health care professionals, “in the middle of these 25 people playing the games,” he remembers. “I closed my eyes and it was just like rolls of laugher.”
Dr. Forrow was not involved in the development of the game but when he checked it out he found it to be “a wonderful blend of serious and humor.” He says that’s important but he tempers his enthusiasm.
Is The Game A Winner?
Dr. Forrow believes the jury is still out. He says there is one ultimate test for this game and for all the other efforts to facilitate an end-of-life conversation.
“We’ll find out whether it’s helpful or not by seeing people using it,” Dr. Forrow says.
The Action Mill has sold about 2,000 games since it went on sale in December.
Dr. Forrow thinks a lot more people need to be having this conversation. And, despite seeing progress, he says, “I don’t actually think anybody is yet doing a good job.”
In an effort to get more people playing the game and having the conversation, Jehlen and his colleagues had the idea of public game nights. Wallace and Wilkinson attended one of the 10 games nights that have been held across the country so far.
While the game was designed for families to play during the holidays, Jehlen says, “the feedback we started hearing was that actually playing the game, talking about end-of-life issues with strangers seemed like it was easier than maybe having this conversation with your family.”
Wallace would agree, but she has a word of warning. She says it’s comfortable either with “complete strangers or very close friends.” But when these game nights happen in small communities, there is the possibility of seeing “people you know in a very casual way,” and that, she says, is “a little odd.”
Jehlen has been viewing these public game nights as something of a warm-up for a family game night. But it’s not just families and strangers, it’s health care professionals too.
Where Does Medicine Come In?
To Jehlen’s surprise, “many of the people who are buying and playing the game are actually health care professionals.” About a third of their sales have been to hospitals, hospices and other health care groups.
On the one hand, this could be a vote of confidence for the game. But on the other hand, Dr. Forrow says, it’s helpful to have this end-of-life conversation in a non-medical context. He worries that when sitting in a doctor’s office, medical concerns dominate the conversation.
“I adamantly, firmly believe that for the conversations to be really about what really matters that they should start maybe even as far away from the hospital doctor’s office as they can,” Dr. Forrow says, “because these are much more fundamentally human issues than medical issues.”
Despite that fundamental nature of the topic, Dr. Forrow believes that it can be helpful not to think about it in such broad terms. “I think focusing on some simple concrete task that you did or did not do, like designating a health care proxy,” can make it easier, he says.
Jehlen admits there aren’t yet clear, concrete steps to take after playing the game. While many of the questions in the deck have a medical undertone, right now there isn’t a guide to help people translate game answers into a Living Will or an Advanced Care Directive. Although, he says, the game’s maker is considering putting downloadable end-of-life care forms on the website.
Regardless of what the next official steps may be, Susanne Wilkinson knows her next move: Before leaving game night, she said she wanted to borrow the game and play it again.
The family would eventually survive a dangerous escape on a sinking boat to Hong Kong, and less than a year later make their way to the United States, where at 4 years old, Yip-Williams had a surgery that granted her some vision, if not enough to drive or read a menu without a magnifying glass.
“It was January in Seattle,” Anne said. “The sun was coming through the window and we could hear the market below beginning to wake up. We were just the three of us, talking and sharing our stories about him and the things we loved and didn’t love, the things that had pissed us off but now we laughed about. I can’t ever, in words, express the sweetness of that moment.
