The right reader of a good poem can tell the moment it strikes him that he has taken a mortal wound — that he will never get over it.
-Robert Frost
Mary Oliver has received many honors for her poetry, including the Pulitzer Prize and The National Book Award
By Ken Trainor
There should be a national day of mourning when our best and most loved poets die. But most of those poets probably wouldn’t want that. Mary Oliver, who died on Jan. 17, was one of them. But she would probably approve of a national day of reading poetry in her honor, so let’s make that day today.
Oliver never took life for granted. She celebrated the daily discipline of paying attention to the world around us, which is essential to conscious living.
For our national day of reading Mary Oliver, I’ve collected some of my favorite passages.
I dedicate them to Joanne Cella-Easton, friend and kindred spirit, who died much too young on Jan. 9.
I go down to the shore in the morning / and depending on the hour the waves / are rolling in or moving out, / and I say, oh, I am miserable, / what shall — / what shall I do? And the sea says / in its lovely voice: / Excuse me, I have work to do.
“I Go Down to the Shore” A Thousand Mornings
Mary Oliver was very good at asking challenging questions in her poems, such as this one from “Have You Ever Tried to Enter the Long Black Branches?”
Listen, are you breathing just a little, and calling it a life?
One of her most popular poems focuses on discerning where we stand in relation to the world:
Whoever you are, no matter how lonely, / the world offers itself to your imagination, / calls to you like the wild geese, harsh and exciting — / over and over announcing your place / in the family of things.
from “Wild Geese” New and Selected Poems, Vol. 1
This is from my favorite Oliver poem — and the most meaningful at a crucial point in my own journey:
But little by little, / as you left their voices behind, / the stars began to burn / through the sheets of clouds, / and there was a new voice / which you slowly / recognized as your own, / that kept you company / as you strode deeper and deeper / into the world, / determined to do / the only thing you could do — / determined to save / the only life you could save.
from “The Journey” New and Selected Poems, Vol. 1
I quoted the following lines in my mother’s eulogy in 2015:
To live in this world / you must be able / to do three things: / to love what is mortal; / to hold it / against your bones knowing / your own life depends on it; / and, when the time comes to let it go, / to let it go.
from “In Blackwater Woods” New and Selected Poems, Vol. 1
She let go of the love of her life, Molly Malone Cook, who died in 2005. Here is Oliver’s prose poem on falling in love:
Listen to me. Lift the oars from the water, let your arms rest, and your heart, and heart’s little intelligence, and listen to me. There is life without love. It is not worth a bent penny, or a scuffed shoe. It is not worth the body of a dead dog nine days unburied. When you hear, a mile away and still out of sight, the churn of the water as it begins to swirl and roil, fretting around the sharp rocks — when you hear that unmistakable pounding — when you feel the mist on your mouth and sense ahead the embattlement, the long falls plunging and steaming — then row, row for your life toward it.
from “West Wind #2” New and Selected Poems, Vol. 2
More challenging questions to keep you awake at night Tell me, what else should I have done? / Doesn’t everything die at last, and too soon? / Tell me, what is it you plan to do / with your one wild and precious life?
from “The Summer Day” New and Selected Poems, Vol. 1
Mary Oliver considered the end with some frequency in her work. When she died last month at the age of 83, I hope she realized she had, indeed, made something of her life.
When it’s over, I want to say: all my life / I was a bride married to amazement. / I was the bridegroom, taking the world into my arms. / When it’s over, I don’t want to wonder / if I have made of my life something particular, and real. / I don’t want to find myself sighing and frightened, / or full of argument. / I don’t want to end up simply having visited this world.
from “When Death Comes” New and Selected Poems, Vol. 1
And she certainly did more than visit the world:
The little sparrow / with the pink beak / calls out, over and over, so simply — not to me / but to the whole world. All afternoon / I grow wiser, listening to him, / soft, small, nameless fellow at the top of some weed, / enjoying his life. If you can sing, do it. If not, / even silence can feel, to the world, like happiness, / like praise, / from the pool of shade you have found beside the everlasting.
from “Just Lying on the Grass at Blackwater”
New and Selected Poems, Vol. 2
“Poetry,” Mary Oliver wrote in A Poetry Handbook, “is a life-cherishing force. For poems are not words, after all, but fires for the cold, ropes let down to the lost, something as necessary as bread in the pockets of the hungry. Yes indeed.”
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.
Leslie Christian recently added unusual language to her living will: After death, she hoped her remains would be reduced to soil and spread around to help out some flowers, or a tree. In essence, compost.
“It seems really gentle,” said Ms. Christian, 71, a financial adviser. “Comforting and natural.”
A bill before the Washington State Legislature would make this state the first in the nation — and probably the world, legal experts said — to explicitly allow human remains to be disposed of and reduced to soil through composting, or what the bill calls recomposition.
The prospect has drawn no public opponents in the state capital as yet, but it is a concept that sometimes raises eyebrows. Funeral directors say a common reaction to the idea, which has been explored and tested in recent scientific studies, is to cringe.
“There’s almost a revulsion at times, when you talk about human composting,” said Brian Flowers, the managing funeral director at Moles Farewell Tributes, a company north of Seattle that supports the bill.
In truth, composting is an ancient and basic method of body disposal. A corpse in the ground without embalming chemicals or a coffin, or in a quickly biodegradable coffin, becomes soil over time.
But death certificates in many states include a box that must be checked for burial or cremation, with no other options. Aboveground composting, through a mortuary process that requires no burial or burning of remains, is a new category without regulation about how it should be done or what can be done with the compost. What that means is that hardly any funeral director — even in states where laws about human remains are loosely worded — would risk offering it without state permission.
Pete Seeger, the folk singer, crooned about the idea: “If I should die before I wake, all my bone and sinew take. Put them in the compost pile to decompose a little while,” goes the song “In Dead Earnest.”
“When radishes and corn you munch you may be having me for lunch.”
In America, there are regional patterns to what comes of bodies after death. In the South and Midwest, where religious or cultural traditions run deep, more families opt for caskets and concretes vaults, and fewer choose cremation, experts say. In the Northeast, where family roots sometimes extend back centuries, people often favor burial in local cemeteries alongside ancestors.
In the Pacific Northwest, by contrast, death is treated somewhat differently, for reasons that sociologists and religious experts have long pondered. It’s a region where transient newcomers have defined the culture since pioneer days. Church attendance is among the lowest in the nation. Preservation of the environment is a central concern.
In Washington State, a larger percentage of residents are cremated than in any other state. Washington has more “green cemeteries,” which encourage a return to nature without manicured lawns and chemicals, than most states; only California and New York have more. And laws allowing physicians to help terminally ill patients hasten their deaths, known as “death with dignity,” were pioneered in the Pacific Northwest.
“It’s this interesting combination of environmental sensibility and individual choice,” David C. Sloane, a professor of public policy at the University of Southern California, said of the Northwest region. Now the prospect of legalized human composting, he said, puts many of those regional impulses in a spotlight. “It’s a test case for seeing how people think,” he said.
A container used in a study of human remains and composting last year at Washington State University.
Jamie Pedersen, a Democratic state senator from Seattle, is leading efforts to pass the legislation to permit a composting process after death.
Democrats control both chambers of the State Legislature, and Mr. Pedersen, the bill’s sponsor, said he had enlisted support from Republicans as well. Gov. Jay Inslee, a Democrat, has taken no position, a spokeswoman said.
At a hearing this month, no one spoke in opposition, though a state association of funeral directors said that it hoped clearer information could be added to the bill about where composted remains could be distributed. It was uncertain, too, whether such a measure would be seen as a priority during a legislative session crowded with issues that may be easier for politicians to talk about and win points on.
The bill would also legalize a separate process sometimes known as water cremation or alkaline hydrolysis. Under that process, already legal in 16 states, bodies are dissolved using a mixture of heated water and lye, leaving behind bone fragments and a sterile liquid.
People are drawn to the idea of aboveground decomposition mainly for environmental reasons, Mr. Pedersen said. There’s no coffin, no chemicals, none of the fossil fuels that would be needed for cremation, and no expensive cemetery plot required. Some religious traditions also favor ideas of simplicity and of earth returning to earth.
Though the process sounds simple, it would not be cheap. Preliminary estimates suggest that it could cost at least $5,000 — less, perhaps, than an elaborate burial service, but more than the most basic cremation.
In a study last year at Washington State University, six bodies donated for the research were placed in a closed container, wrapped in organic materials like alfalfa, then bathed in a stream of air warmed by microbes, and periodically turned. Lynne Carpenter-Boggs, a professor of soil science and sustainable agriculture and the lead researcher in the study, said that after about 30 days, the bodies essentially became soil.
Fears that composted remains might smell bad or contain toxic elements — from dental fillings, for example, or pharmaceutical residues — were allayed, Dr. Carpenter-Boggs said. She said that the heat generated by micro-organisms broke down organic matter and pathogens, and levels of pollutants like cadmium and mercury were within federal limits.
“It certainly is feasible that families would take home a small portion that they could keep for a long time,” Dr. Carpenter-Boggs said. “Or families could bring home a small amount that would be interred into their landscape, placed under a loved one’s favorite tree, similar to what people do with cremains.”
Katrina Spade, the founder and chief executive of Recompose, a Seattle company that hopes to build the first facility to use the new method and conduct funeral services based around it, said the movement toward cremation — now used in more than half of deaths in the nation — has led to an erosion of essential rituals. Remains are often just picked up from a crematory, she said, and that’s that.
“This is not simply a process to convert bodies to soil; it’s also about bringing ritual and some of that ceremony back,” Ms. Spade said.
Ms. Christian, the woman who is hoping recomposition will be an option after she dies, says she has long been uncomfortable with the other choices. She has ruled out burial. And she does not like the idea of cremation because of environmental costs — emissions and climate impacts of fossil fuels used in the burning process. But her friends remain divided on the issue.
“The vast majority are like, ‘That is so cool,’” she said. “And then the other response is, ‘Oh, gross.’”
“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.
