A UBC professor has determined that people diagnosed with terminal cancer—who have hope, positivity and family support—are able to live well during the advanced stage of the disease.
Carole Robinson, professor emeritus with UBC Okanagan School of Nursing, recently published a paper explaining the process of living well with an awareness of dying.
“While there is a growing body of research focused on select aspects of people’s experiences with advanced cancer, there is little research examining the process of living with advanced cancer across the trajectory towards death,” says Robinson. “Even patients whose prognosis is limited are living longer and want to live well, making this issue a global concern.”
Robinson notes that globally there are 14.1 million new cancer cases diagnosed each year, 8.2 million cancer deaths, and 32.6 million people living with cancer. Historically, researchers have studied the concept of living well with a chronic illness, but not specifically cancer. Robinson says those studies convey the idea it may be possible to live well with advanced cancer, but little is known about how it is done or how to support it.
The study analyzed 22 interviews with Spanish residents involved in previous research that explored their experience of living with advanced cancer. The researchers found the participants engaged in a five-phase iterative process: struggling, accepting, living with advanced cancer, sharing the illness experience and reconstructing life. This process revolved around participants’ awareness of dying, which differed from people living with chronic illness and was a unique aspect of this newresearch.
Each phase was revisited, and as the disease advanced living well got more challenging. Participants talked about strategies for living with advanced cancer, including making life adjustments, maintaining a positive attitude, normalizing and hoping.
Over time, participants realized struggling against the disease created additional difficulties. In fact, they understood it was counterproductive so they made a conscious choice to let go of struggling. Some referred to it as being the only choice they could make while living with the uncertainty of advanced cancer. This enabled accepting their life circumstances at some level and learning to live alongside their illness.
Robinson says that the importance of family love and support cannot be underestimated. For all the participants, she adds, awareness of dying led them to focus on living well. Sharing the experience with loved ones softened suffering remarkably. They were aware they did not have time to lose.
“Although it might happen in moments, participants were able to put advanced cancer behind them and live life rather than living their illness,” she notes. “Living in the moment enabled deep appreciation of everyday things such as the beauty of a flower garden.”
Robinson says the key takeaways to living well encompass a balance between dependence and independence, being able to see the positive and maintaining hope even in the end stages of the disease.
“The participants in this study worked hard to live a life rather than live an illness,” says Robinson. “The implication here is to support the positive. It has been found in previous research that hoping for a cure when cancer is advanced is not lack of awareness—it can be a choice in focusing simply on positive possibilities.”
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.
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.
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.
Where do you see yourself in five years? Ten? Twenty? It’s not an unusual question to hear, though answering it is never easy.
But what if you knew you weren’t going to live that long? What if you knew your death was coming in a matter of months — or even sooner?
End-of-life care is, generally speaking, the care that someone receives after being diagnosed with a terminal illness, such as cancer or Alzheimer’s disease. While some diseases may be treatable and even curable, terminal diseases are typically those for which there are no cures, and decisions regarding end-of-life care prioritize making the most of an individual’s time left.
Max Vergo, a palliative care doctor and assistant professor at the Geisel School of Medicine, explained that end-of-life care is highly individualized, and not all treatments are appropriate for a patient’s wishes. For example, some patients prioritize extending their lifespans as much as possible, perhaps to be able to attend a special event like someone’s graduation. But opting to live longer might come at the cost of a lesser quality of life, such as being bound to a hospital bed.
Other patients, however, would rather prioritize different treatments that would allow them to maintain a certain quality of life — say, being able to walk freely or live at home — even if that means their death may arrive sooner.
“For some people, [prioritizing living longer] feels like the quality would be so poor, it wouldn’t really be valuable time,” Vergo said. “Knowing that their time is limited anyway, they may choose a [different] path. … At least they’ll have some control over what the quality [of life] looks like.”
End-of-life decisions, while incredibly individual, often involve an entire of team of medical professionals. Kathryn Kirkland, the director of palliative care at Dartmouth-Hitchcock Medical Center and a professor at Geisel, spoke about how her patients interact with an interdisciplinary team of doctors and nurses, social workers, chaplains, creative writing specialists, artists and other volunteers, all of whom work to take care of “the whole person.”
Kirkland also explained how her team works with patients’ families and loved ones as well. For example, patients with terminal issues often experience feeling like a burden to their families. In those cases, patients and their families go through counseling to discuss those feelings and identify ways to alleviate them.
“Taking care of somebody who is very sick is a hard thing to do sometimes,” Kirkland said. “Most family members end up reassuring the person with [the] illness that they want to help, that the patient is not being a burden, but unless you have those conversations, it can be hard to influence people’s decision making.”
Among the many options that patients sometimes have, one of the most controversial is physician-assisted dying, also known as physician-assisted suicide. Ann Bumpus, who taught the course Philosophy 5, “Philosophy and Medicine” last fall, explained how physician-assisted suicide is different from euthanasia because patients take a drug that they know will cause their deaths, whereas euthanasia is when a physician administers the drug, usually via an injection.
Euthanasia is illegal in all 50 states, but physician-assisted suicide is legal in a handful of states. It became legal for Vermont residents in 2013 with Act 39, the Vermont Patient Choice and Control at the End of Life Act; physician-assisted suicide is still illegal in New Hampshire.
Cristine Maloney is the hospice medical director for Visiting Nurse and Hospice for Vermont and New Hampshire, meaning that she sees patients in both states. She noted that, given the difference between the law between Vermont and New Hampshire, she’s always cognizant of which side of the border she’s on when working with patients.
Maloney noted that when discussing the option with patients in Vermont, she tried to understand why they are considering it in the first place. Many patients are unfamiliar with the process, which requires two different physicians — one consulting and one prescribing — and a waiting period of at least two and a half weeks. Another misconception is that patients receive a shot or intravenons treatment to end their life, when in reality, it’s a powder that dissolves in water that patients must be able to take by themselves.
When asked about the emotional aspect of physician-assisted dying, Maloney said that many of her discussions with patients revolve around their desire to have control over this aspect of their life, as well as the expected nervousness about what dying is like. She noted that family members, and even the doctors who prescribe the medicine, often feel intense emotions too.
“After a patient takes medication like this, they die, but their caregivers or family members live with that experience, and so they often have also had some strong opinions … or feel nervous or concerned about it as a family member,” Maloney said. “I think the same is true for the [physicians]. Most of them are doing this for the first time, and it’s very different than anything a physician usually does. We’re usually doing the opposite, giving folks medications to not end their lives.”
How does physician-assisted dying enter into the broader topic of suicide as a whole? The name of the process itself is controversial. While the terms “physician-assisted dying” and “physician-assisted suicide” seem interchangeable in everyday discourse, Vergo expressed a strong preference toward the former.
“In our profession, [we don’t use] ‘suicide’ because these are rational decisions that people make,” Vergo said.
Bumpus spoke about how some of the arguments against physician-assisted dying include the possibility that it leads to a rise in suicide rates in young people and terminally ill people, acknowledging that there is not yet good evidence to prove or disprove the concern. She also touched upon the use of the word “suicide” instead of “dying.”
“Calling it suicide emphasizes the similarity, and the similarity is just that, technically, the person takes their own life,” Bumpus said. “I think using the word suicide for both overstates the similarities. I’m not saying that suicide is always irrational or always wrong, but I think these cases are really special end-of-life cases and ought to be looked at separately.”
Another compelling concern with physician-assisted suicide that Bumpus brought up was that vulnerable populations, including individuals without good health insurance or a strong understanding of the medical system, may be pressured — however subtly — to choose physician-assisted dying without exploring other options as much as they would have otherwise. While we, as a society, often believe that more options leads to more freedom, that’s not always the case, and offering physician-assisted suicide could end with patients feeling obligated to take it.
So, what can students do? For students who are interested in the medical field and may one day have end-of-life care conversations with patients and families, Vergo spoke about how much of his teaching work involves perspective training. It’s essential for physicians to understand how, given the same information, different people can have different perspectives, and none of them are wrong. He also acknowledged that having these conversations can be emotionally taxing for health care professionals as well, and a tried-and-true “scaffold” to fall back on during these conversations can help.
Vergo emphasized that no one is born having mastered these skills, but instead they are gained gradually with practice and training.
“It’s just like in sports,” Vergo said. “You don’t just become an awesome soccer player on your own. You usually have a team and then a coach that helps you figure out how you can take the next step in your skills. We do a lot of coaching.”
For students who aren’t necessarily interested in the medical field, these topics can still be important to think about, especially since many patients in end-of-life care couldn’t have anticipated their current situations. Kirkland, who has taken care of students who have gotten into car crashes or skiing accidents, has even seen friends enter positions where they had to make important decisions. While these topics aren’t always easy to talk about, having conversations early about what you value most in life is a valuable investment.
“Even though students don’t really want to think about how they’re mortal like everyone else, it is probably worthwhile to think about who you would want making decisions for you if you couldn’t make them for yourself,” Kirkland said. “Having conversations with families is important to do.”
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.
