As we were sitting in our hospice team meeting yesterday, someone shared a story about how a Santa Claus brought comfort to a dying boy and how the boy died in his arms. See our hospice blog for the video and article.
As we were sitting in our hospice team meeting yesterday, someone shared a story about how a Santa Claus brought comfort to a dying boy and how the boy died in his arms. See our hospice blog for the video and article.
Aging, american attitudes to death, chaplaincy, death, death and dying, dying, elderly, end-of-life care, EST Pew Research Center, health care, Hospice, hospice care, Huffington Post, medical treatment, New Pew Research Center Survey The Huffington Post, Pew Research, Pew Research Center, research
It seems I missed this Pew Research Report but a survey was published in November describing American’s attitudes toward death and dying. Here is a synopsis of the report according to Huffington Post. Keep in mind that it is always best to see the actual report to get a true picture, but I think the information below does present an accurate portrayal nevertheless.
The Huffington Post | By Yasmine Hafiz
Posted: 11/21/2013 12:11 pm EST | Updated: 11/21/2013 12:24 pm EST
However, starting the conversation about the end of life is not always easy, and a large chunk of U.S. adults haven’t given much thought to their preferences at all.
But discussing death doesn’t have to be morbid. In fact, it’s often an excellent idea to talk about preferences before it’s necessary. That’s the idea behind “Death Over Dinner,” which are meals organized in order to connect friends and strangers through conversations about life and death.
Laura Sweet, a former hospice volunteer and a “Death Over Dinner” host, says, “We want to talk in an informal way about personal experiences with death. How do people want to die? Have you shared that with anyone? What deaths have you experienced? We don’t want it to be distasteful, or uncomfortable, but an uplifting atmosphere.”
These facts drawn from the Pew survey about American attitudes towards death show the importance of thinking about the end of life, and communicating with loved ones about preferences.
1. America’s elderly population has more than tripled in size over the last century
The share of the total U.S. population that is age 65 and older has more than tripled over the last century, from roughly 4% in 1900 to 14% in 2012.
2. Over a quarter of U.S. adults haven’t really thought about future medical treatment at the end of their lives
Fully a quarter of adults (27%) say that they have not given very much thought or have given no thought at all to how they would like doctors and other medical professionals to handle their medical treatment at the end of their lives, even those aged 75 or older (25%).
3. Most Americans are expected to live well into their seventies
The average life expectancy in the U.S. is now 78.7 years.
4. The majority of U.S. adults would want to stop medical treatment if they were suffering a lot of pain with dire hope for improvement
57% of adults say that they would tell their doctors to stop treatment if they had an incurable disease with no hope of improvement and were suffering a great deal of pain.
5. About one third of Americans would fight for life no matter what
About a third of adults (35%) say they would tell their doctors to do anything possible to keep them alive, even if the circumstances were so dire that they had a disease with no hope of improvement and were experiencing a great deal of pain.
6. A majority of adults believe in a moral right to suicide, if a person was in great pain with no hope of getting better
62% of adults say that a person suffering a great deal of pain with no hope of improvement has a moral right to commit suicide.
7. There is a big split on the issue of the legitimacy of physician-assisted suicide
47% of adults approve of laws to allow doctor-assisted suicide for terminally ill patients, while 49% disapprove.
8. Race greatly affects the answers of whether people would want to fight to stay alive in great pain and little hope of improvement
Only 26% of white U.S. adults would ask their doctors to do everything possible to save their lives if they had a disease with no hope of improvement and were suffering a great deal of pain, in stark contrast with the 61% of black adults and 55% of Hispanic adults who would want the maximum effort expended on life-saving strategies.
9. Death has affected most people in the United States
About half of adults (47%) say they have a friend or relative who has had a terminal illness or who has been a coma within the last five years.
10. A majority of U.S. adults believe that an infant should receive as much treatment as possible in the case of a life-threatening birth defect, even if parents want to refuse treatment
38% of adults believe that a parent has a right to refuse treatment on behalf of an infant in the case of a life-threatening birth defect, while 57% say that an infant should receive as much treatment as possible, regardless of the defect.
11. Religion and race greatly affect people’s response to the idea of a moral right to suicide in case of great pain
Black Protestants are most inclined to reject the idea of a moral right to suicide, out of the religious and racial groups surveyed. Religiously unaffiliated adults were most likely to support a moral right to suicide.
12. Optimism for the future is harder to find in the older generation
Only about a fifth (19%) of adults aged 75 and older expect their lives to be better in ten years compared with today, though 71% of people aged 18-49 believe that their life will improve in the future.
Pew Research Center first surveyed American attitudes about death in 1990, then again in 2005. This survey was conducted by telephone with a national sample of adults, 18 years of age or older, living in all fifty U.S. states as well as the District of Columbia. 1,994 interviews were conducted in English and Spanish from March 21 to April 8, 2013. The margin of error for the entire sample is ±2.9 percentage points.
Note: In headlines, ‘Americans’ and ‘U.S. adults’ are sometimes used interchangeably for the sake of flow.
assisted suicide, death, death and dying, dying, elder care, end of life choices, extubation, health care, Hospice, hospice care, life sustaining treatment, margaret pabst battin, medical ethics, NY Times, physician assisted suicide, psychological challenges, robin marantz henig, suffering
As I was about to post the article below, I came across a new conclusion to the story that was just published yesterday, so I will share both with you. The basic premise of the story in my reading is that even when a person is 100% sure that assisted suicide is appropriate and that people should have choice on when to end his/her life, when it becomes a reality there is a tremendous fear and hesitancy. I think it is important to be cognizant of the distinction between theory and reality. I think we need to be aware of the deep psychological challenges even surrounding a loved one making a choice to end his/her life for the survivors, something I have stated before.
I also need to make one additional point about the update to the story. It gives a depiction of hospice which I think is will be easily misinterpreted. Many will read this and think hospice is there to literally end one’s life. The goal of hospice care is comfort care for people who have life threatening illness and the gentleman of our story who had made his choice to stop all life sustaining measures was looking for comfort care from hospice, not for hospice to be the one to do the deed. Hospices will extubate (remove ventilators) from people at the person’s or the family’s request but that doesn’t mean the hospice insists on the ventilator being removed. Hospice doesn’t actively advocate for hastening one’s death. There is a tremendous difference, one which needs much clarification.
Photograph by Christaan Felber for The New York Times. Video by Margaret Cheatham Williams.
A Right to Die, a Will to Live: As a bioethicist, Peggy Battin fought for the right of people to end their own lives. After her husband’s cycling accident, her field of study turned unbearably personal.
By ROBIN MARANTZ HENIG
If Margaret Pabst Battin hadn’t had a cold that day, she would have joined her husband, Brooke Hopkins, on his bike ride. Instead Peggy (as just about everyone calls her) went to two lectures at the University of Utah, where she teaches philosophy and writes about end-of-life bioethics. Which is why she wasn’t with Brooke the moment everything changed.
Brooke was cycling down a hill in City Creek Canyon in Salt Lake City when he collided with an oncoming bicycle around a blind curve, catapulting him onto the mountain path. His helmet cracked just above the left temple, meaning Brooke fell directly on his head, and his body followed in a grotesque somersault that broke his neck at the top of the spine. He stopped breathing, turned purple and might have died if a flight-rescue nurse didn’t happen to jog by. The jogger resuscitated and stabilized him, and someone raced to the bottom of the canyon to call 911.
If Peggy had been there and known the extent of Brooke’s injury, she might have urged the rescuers not to revive him. Brooke updated a living will the previous year, specifying that should he suffer a grievous illness or injury leading to a terminal condition or vegetative state, he wanted no procedures done that “would serve only to unnaturally prolong the moment of my death and to unnaturally postpone or prolong the dying process.” But Peggy wasn’t there, and Brooke, who had recently retired as an English professor at the University of Utah, was kept breathing with a hand-pumped air bag during the ambulance ride to University Hospital, three miles away. As soon as he got there, he was attached to a ventilator.
By the time Peggy arrived and saw her husband ensnared in the life-sustaining machinery he hoped to avoid, decisions about intervention already had been made. It was Nov. 14, 2008, late afternoon. She didn’t know yet that Brooke would end up a quadriplegic, paralyzed from the shoulders down.
Suffering, suicide, euthanasia, a dignified death — these were subjects she had thought and written about for years, and now, suddenly, they turned unbearably personal. Alongside her physically ravaged husband, she would watch lofty ideas be trumped by reality — and would discover just how messy, raw and muddled the end of life can be.
In the weeks after the accident, Peggy found herself thinking about the title character in Tolstoy’s “Death of Ivan Ilyich,” who wondered, “What if my whole life has been wrong?” Her whole life had involved writing “wheelbarrows full” of books and articles championing self-determination in dying. And now here was her husband, a plugged-in mannequin in the I.C.U., the very embodiment of a right-to-die case study.
An international leader in bioethics, Peggy explored the right to a good and easeful death by their own hand, if need be, for people who were terminally ill, as well as for those whose lives had become intolerable because of chronic illness, serious injury or extreme old age. She didn’t shy away from contentious words like “euthanasia.” Nor did she run from fringe groups like NuTech, which is devoted to finding more-efficient methods of what it calls self-deliverance, or Soars (Society for Old Age Rational Suicide), which defends the right of the “very elderly” to choose death as a way to pre-empt old-age catastrophes. She also found common purpose with more-mainstream groups, like Compassion and Choices, that push for legislation or ballot initiatives to allow doctors to help “hasten death” in the terminally ill (which is now permitted, with restrictions, in Oregon, Washington, Montana and Vermont). And she testified in trials on behalf of individuals seeking permission to end their lives legally with the help of a doctor or a loved one.
At the heart of her argument was her belief in autonomy. “The competent patient can, and ought to be accorded the right to, determine what is to be done to him or her, even if . . . it means he or she will die,” she wrote in 1994 in “The Least Worst Death,” the third of her seven books about how we die.
Peggy traces her interest in death to her mother’s difficult one, from liver cancer, when Peggy was 21. Only later, when she started to write fiction in an M.F.A. program at the University of California, Irvine, (which she completed while getting her doctorate in philosophy and raising two young children) did she realize how much that event had shaped her thinking. Her short stories “all looked like bioethics problems,” she says, wrestling with topics like aging, mental competence, medical research, suicide — moral quandaries she would be mining for the rest of her life.
Fiction allowed her to riff on scenarios more freely than philosophy did, so she sometimes used it in her scholarly writing. In “Ending Life: Ethics and the Way We Die,” published in 2005, she included two short stories: a fictional account of an aged couple planning a tandem suicide to make way for the younger generation, until one of them has a change of heart; and a story based on an actual experience in grad school, when Peggy had to help a scientist kill the dogs in his psych experiment. The point of including the second story, she wrote in the book’s introduction, was to ground her philosophical arguments in something more elemental, “the unsettling, stomach-disturbing, conscience-trying unease” of being involved in any death, whether through action, as happened in that laboratory, or acquiescence.
When Peggy finished her doctorate in 1976, the right-to-die debate was dominated by the media spectacle around Karen Ann Quinlan, a comatose young woman whose parents went to the New Jersey Supreme Court for permission to withdraw her from life support. It helped Peggy clarify her thoughts about death with dignity and shaped her belief in self-determination as a basic human right. “A person should be accorded the right to live his or her life as they see fit (provided, of course, that this does not significantly harm others), and that includes the very end of their life,” she wrote in one of her nearly 40 journal articles on this subject. “That’s just the way I see it.”
That’s the way she saw it after Brooke’s accident too, but with a new spiky awareness of what it means to choose death. Scholarly thought experiments were one thing, but this was a man she adored — a man with whom she shared a rich and passionate life for more than 30 years — who was now physically devastated but still free, as she knew he had to be, to make a choice that would cause her anguish.
“It is not just about terminally ill people in general in a kind of abstract way now,” she wrote after the accident; “it’s also about my husband, Brooke. I still love him, that’s a simple fact. What if he wanted to die? Can I imagine standing by while his ventilator was switched off ?”
Before the collision, Brooke was known for his gusto. “At parties he was the one who ate the most, drank the most, talked the loudest, danced the longest,” one friend recalls. A striking 6-foot-5, he had a winning smile and a mess of steely gray hair and was often off on some adventure with friends. He went on expeditions to the Himalayas, Argentina, Chile, China, Venezuela and more; closer to home, he often cycled, hiked or backcountry skied in the mountains around Salt Lake City. In addition, Brooke, who had a bachelor’s degree and a doctorate from Harvard, was a popular English professor who taught British and American literature with a special fondness for the poetry of Wordsworth, Shelley, Byron and Keats.
All that energy went absolutely still at the moment of his collision. When Brooke woke up in the I.C.U., his stepson, Mike, was at the bedside and had to tell Brooke that he might never again walk, turn over or breathe on his own. Brooke remained silent — he was made mute by the ventilation tube down his throat — but he thought of Keats:
The feel of not to feel it,
When there is none to heal it
Nor numbed sense to steel it.
“Those words, ‘the feel of not to feel it,’ suddenly meant something to me in ways that they never had before,” he wrote later on a blog his stepdaughter, Sara, started to keep people apprised of his progress. “My suffering was going to be a drop in the bucket compared to all the human suffering experienced by people throughout human history, but still, it was going to be a suffering nevertheless.”
Brooke took some solace in Buddhism, which he began exploring when he was in his 40s. A few weeks after the accident, a local Buddhist teacher, Lama Thupten Dorje Gyaltsen, came to his hospital room. “The body is ephemeral,” Lama Thupten declared, gesturing at his own body under his maroon-and-saffron robe. He urged Brooke to focus on his mind. At the time, it was a comfort to think that his mind, which seemed intact, was all that mattered. It meant he could still be the same man he always was even if he never moved again. But as much as he yearned to believe it, Brooke’s subsequent experiences — spasms, pain, catheterizations, bouts of pneumonia, infected abscesses in his groin — have made him wary of platitudes. He still wants to believe the mind is everything. But he has learned that no mind can fly free of a useless body’s incessant neediness.
One gray morning in February, more than four years after the accident, I met Brooke and Peggy at their home in the Salt Lake City neighborhood known as the Avenues. Brooke rolled into the living room in his motorized wheelchair. It was a month before his 71st birthday, and his handsome face was animated by intense, shiny brown eyes, deep-set under a bristly awning of brow. He was dressed as usual: a pullover, polyester pants that snap open all the way down each leg, a diaper and green Crocs. A friend was reading on a couch nearby, a caregiver was doing her schoolwork in the kitchen and Peggy had retreated upstairs to her office amid towers of papers, books and magazines. She had finally gained some momentum on a project that was slowed by Brooke’s accident: a compendium of philosophical writings about suicide, dating as far back as Aristotle.
Peggy, who is 72, still works full time. This lets her hold on to the university’s excellent health insurance, which covers a large portion of Brooke’s inpatient care and doctor bills, with Medicare paying most of the rest of them. But even with this double coverage, Peggy spends a lot of time arguing with insurance companies that balk at expenditures like his $45,000 wheelchair. And she still pays a huge amount of the cost, including nearly $250,000 a year to Brooke’s caregivers, 12 mostly young and devoted health care workers who come in shifts so there’s always at least one on duty. Peggy says she and Brooke were lucky to have had a healthy retirement fund at the time of the accident, but she doesn’t know how many more years they will be able to sustain this level of high-quality 24-hour care.
Scattered around the living room were counter-height stools that Peggy picked up at yard sales. She urges visitors to pull them up to Brooke’s wheelchair, because he’s tall and the stools bring most people to eye level. About two years ago, Brooke used a ventilator only when he slept, but following a series of infections and other setbacks, he was now on the ventilator many of his waking hours, too, along with a diaphragmatic pacer that kept his breathing regular. Earlier that morning his caregiver adjusted the ventilator so he and I could talk, deflating the cuff around his tracheostomy tube to allow air to pass over his larynx. This let him speak the way everyone does, vocalizing as he exhaled. It seemed to tire him, though; his pauses became longer as our conversation went on. But whenever I suggested that we stop for a while so he could rest, Brooke insisted that he wanted to keep talking.
What he wanted to talk about was how depressed he was. He recognized the feeling, having struggled with bipolar disorder since adolescence. “It takes a long time to get ready for anything,” he said about his life now. “To get up in the morning, which I kind of hate, to have every day be more or less the same as every other day . . . and then to spend so much time going to bed. Day after day, day after day, day after day.”
Brooke has good days and bad days. When friends are around playing blues harmonica or reading aloud to him, when his mind is clear and his body is not in pain — that’s a good day. On a good day, he said, he feels even more creative than he was in his able-bodied life, and his relationships with Peggy, his two stepchildren and his many friends are richer and more intimate than before; he has no time or patience for small talk, and neither do they. Every so often he’ll turn to Peggy and announce, “I love my life.”
On a good day, Brooke’s voice is strong, which lets him keep up with reading and writing with voice-recognition software. A caregiver arranges a Bluetooth microphone on his head, and he dictates e-mail and races through books by calling out, “Page down,” when he reaches the bottom of a screen. On a good day, he also might get outside for a while.“I like to take long walks, quote unquote, in the park,” he told me. “There’s a graveyard somewhat lugubriously next to us that I like to go through,” pushed in his wheelchair by a caregiver with Peggy alongside. A couple of years ago, he and Peggy bought two plots there; they get a kick out of visiting their burial sites and taking in the view.
But on bad days these pleasures fade, and everything about his current life seems bleak. These are days when physical problems — latent infections, low oxygen levels, drug interactions or, in a cruel paradox of paralysis, severe pain in his motionless limbs — can lead to exhaustion, depression, confusion and even hallucinations. As Brooke described these darker times, Peggy came down from her office and sat nearby, half-listening. She has bright blue eyes and a pretty, freckled face fringed by blond-white hair. Most days she wears jeans and running shoes and a slightly distracted expression. She takes long hikes almost daily, and once a week tries to squeeze in a Pilates session to help treat her scoliosis. Each body harbors its own form of decay, and this is Peggy’s; the scoliosis is getting worse as she ages.
She walked over to us, bent crookedly at the waist, and gently kissed Brooke’s forehead. “Depression is not uncommon in winter,” she said in the soft voice she almost always uses with him. “It’s important to think positive thoughts.”
“Basically I dislike being dependent, that’s all,” he said, looking hard into her eyes. He spit some excess saliva into a cup.
“It’s something you never complain about,” she said. “You’re not a big complainer.”
“One thing I don’t like is people speaking for me, though.”
Peggy looked a bit stung. “And that includes me?” she asked.
“Yes,” he said, still looking into her eyes. “I don’t like that.”
She made an effort not to get defensive. “Well, sometimes that has to happen, for me to speak for you,” she began. “But . . . but not always. I try not to.”
Brooke seemed sorry to have spoken up; it was clear he didn’t want to hurt her. “I’m trying to be as frank as possible,” he said.
“No, it’s good,” she assured him, her protective instincts clicking in. “It helps me for you to say that, to tell me what you would have wanted to say instead.”
All Brooke could muster was a raspy, “Yep.”
“The most important thing is to not speak for someone else,” Peggy insisted.
“Yep,” Brooke repeated. “What I want to do most right now is be quiet and read.” So Peggy and I left him in the living room, where the big-screen monitor was queued up to Chapter 46 of “Moby-Dick.” “Page down,” he called out, forced to keep repeating it like a mantra because his speech was croaky and the software had trouble recognizing the phrase. “Page down. Page down.”
For Brooke, what elevates his life beyond the day-to-day slog of maintaining it — the vast team effort required to keep his inert sack of a body fed and dressed and clean and functioning — is his continuing ability to teach part time through the University of Utah’s adult-education program. During my February visit, I sat in on one of his classes, which he teaches with Michael Rudick, another retired English professor from the university. Some two dozen students, most over 60, crammed into Brooke’s living room for a discussion of “Moby-Dick.” Conversation turned to the mind-body problem. “Melville is making fun here of Descartes, as though you could exist as a mind without a body,” said Howard Horwitz, who teaches in the English department and was helping out that day.
Brooke seemed exhausted and sat quietly, impassive as Buddha as his ventilator sighed. At one point a student called out to ask what Brooke thought about a particular passage. He responded with an oblique, “I’d much rather hear what you think,” and was silent for the rest of the class. The discussion continued with the two other professors taking charge. There was an almost forced animation, as if the students had tacitly agreed to cover for a man they loved, admired and were worried about.
When Peggy arrived late — she was at a meeting on campus — Brooke flashed her one of his dazzling smiles. His eyes stayed on her as she positioned herself near an old baby grand that hugs a corner of the living room, a memento from Brooke’s parents’ house in Baltimore. Above the piano is a huge painting that Peggy got years ago, a serial self-portrait of a dark-haired figure with a mustache — six full-body images of the same man in various stages of disappearing.
“He’s never looked this bad,” Peggy whispered to me during the break as students milled around. She went to Brooke and kissed his forehead. “Are you O.K.?” she asked softly.
“I’m fine,” he said. “Don’t worry.”
They have this exchange a lot: Peggy leaning in to ask if he’s O.K., Brooke telling her not to worry, Peggy worrying anyway. Quietly, so the students wouldn’t hear, she asked the respiratory therapist on duty, Jaycee Carter, when Brooke last had his CoughAssist therapy, a method that forces out mucus that can clog his lungs. “Three hours ago,” Jaycee said. But Brooke said he didn’t want it while the class was there: it’s noisy, and it brings up a lot of unsightly phlegm. As students started to head back to their seats, Peggy lit on a more discreet alternative: a spritz of albuterol, used in asthma inhalers to relax the airways, into his trach tube. Jaycee stood by awaiting instructions, Brooke kept shaking his head — no albuterol, not now, no — and Peggy kept insisting. At last, annoyance prickling his expressive eyebrows, he gave in, and Jaycee did as she was told. But the albuterol didn’t help.
Peggy retreated to the piano as the class resumed, her eyes brimming. “This is bad,” she murmured. “This is really bad.” Underlying her anxiety was a frightening possibility: that Brooke’s inability to teach that day was the start of a progressive decline. Up until then, his occasional mental fogginess was always explained by something transient, like an infection. But if he were to lose his intellectual functioning, he would be robbed of all the things that still give his life meaning: teaching, writing and interacting with the people he loves. If that day ever came, it would provoke a grim reckoning, forcing Brooke to rethink — provided he was still capable of thinking — whether this is a life worth holding onto.
After class, Jaycee wheeled Brooke to the dining area so he could sit with Peggy and me as we ate dinner. Brooke doesn’t eat anymore. Last August he had a feeding tube inserted as a way to avoid the dangerous infections and inflammations that were constantly sending him to the hospital. If he doesn’t chew, drink or swallow, there’s less chance that food or fluid will end up in his lungs and cause aspiration pneumonia.
In his prior life, Brooke couldn’t have imagined tolerating a feeding tube; he loved eating too much. In fact, when he updated his living will in 2007, he specifically noted his wish to avoid “administration of sustenance and hydration.” But the document had a caveat found in most advance directives, one that has proved critical in negotiating his care since the accident: “I reserve the right to give current medical directions to physicians and other providers of medical services so long as I am able,” even if they conflict with the living will.
Thus a man who had always taken great joy in preparing, sharing and savoring food decided to give up his final sensory pleasure in order to go on living. He swears he doesn’t miss it. He had already been limited to soft, easy-to-swallow foods with no seeds or crunchiness — runny eggs, yogurt, mashed avocado. And as much as he loved the social aspects of eating, the long conversations over the last of the wine, he managed, with some gentle prodding from Peggy, to think of the feeding tube as a kind of liberation. After all, as she explained on the family blog, Brooke could still do “almost all the important things that are part of the enjoyment of food” — he could still smell its aroma, admire its presentation, join in on the mealtime chatter, even sample a morsel the way a wine taster might, chewing it and then discreetly spitting it out. Maybe, she wrote, “being liberated from the crass bodily necessity of eating brings you a step closer to some sort of nirvana.”
Or as Brooke put it to me in his unvarnished way: “You can get used to anything.”
Brooke kept nodding off as he sat watching us eat — the class had really drained him — but Peggy kept him up until 9 o’clock, when his hourlong bedtime ritual begins. After Jaycee brought him to his room, she and the night-shift caregiver hoisted him from his wheelchair and into the bed using an elaborate system of ceiling tracks, slings and motorized lifts; changed him into a hospital gown; washed his face and brushed his teeth; emptied his bladder with a catheter; strapped on booties and finger splints to position his extremities; hooked him up to the ventilator; and set up four cans of Replete Fiber to slowly drip into his feeding tube as he slept. The ritual ended with what Brooke and Peggy think of as the most important part of the day, when Brooke finally is settled into bed and Peggy takes off her shoes and climbs in, too, keeping him company until he gets sleepy. (Peggy sleeps in a new bedroom she had built upstairs.) There they lie, side by side in his double-wide hospital bed, their heads close on the pillow, talking in the low, private rumbles of any intimate marriage.
Throughout the first half of last year, Brooke had severe pain in his back and legs, and all the remedies he tried — acupuncture, cortisone shots, pressure-point therapy, nerve-impulse scrambling — were useless. At one point last summer, he decided he couldn’t go on living that way. “Pain eats away at your soul,” he wrote on July 28, 2012, using his voice-recognition software to dictate what he called a “Final Letter” to his loved ones, explaining why he now wanted to die:
For many years since the accident I have been motivated by a deep will to live and to contribute to the benefit of others in my small way. I think I have done that. And I am proud of it. But as I have told Peggy over the past few months, I knew that I would reach a limit to what I could do. And I have arrived at the limit over the past couple of weeks.
He had thoughts like this before, but this time it felt different to Peggy, who proofread and typed the letter; the longing for death felt like something carefully considered, something serious and sincere. This was an autonomous, fully alert person making a decision about his own final days — the very situation she had spent her career defending. She reasoned that Brooke had the right, as a mentally competent patient, to reject medical interventions that could further prolong his life, even though he did not live in a state where assisted suicide was explicitly legal. And if he wanted to reject those interventions now, after four years of consenting to every treatment, Peggy was ready to help. She shifted from being Brooke’s devoted lifeline to being the midwife to his death.
She knew from a hospice nurse that one way to ease a patient’s dying included morphine for “air hunger,” Haldol for “delusions and end-of-life agitation” and Tylenol suppositories for “end-of-life fever, 99 to 101 degrees.” Another nurse mentioned morphine, Haldol and the sedative Ativan; a third talked about Duragesic patches to deliver fentanyl, a potent opium alternative used for pain. Peggy also tried to find out whether cardiologists would ever be willing to order deactivation of a pacemaker at a very ill patient’s request (probably, she was told). She kept pages of scribbled notes in a blue folder marked “Death and Dying.” She had also taken careful notes when Brooke started to talk about his funeral. He told her what music he wanted, including a few gospel songs by Marion Williams, and which readings from Wordsworth’s “Lucy Poems” and Whitman’s “Leaves of Grass.” On his gravestone, he might like a line from Henry Adams: “A teacher affects eternity; he can never tell where his influence stops.” These were good conversations, but they left him, he told Peggy, “completely emotionally torn up.”
Then in early August, fluid started accumulating in Brooke’s chest cavity, a condition known as pleural effusion, and he had trouble breathing, even on the ventilator. He was uncomfortable and becoming delirious. Other people, including a few of Brooke’s caregivers, might have seen this as a kind of divine intervention — a rapid deterioration just when Brooke was longing for death anyway, easing him into a final release. But that’s not how Peggy saw it. This was not the death Brooke wanted, confused and in pain, she explained to me later; he had always spoken of a “generous death” for which he was alert, calm, present and surrounded by people he loved. So she consulted with a physician at the hospital about whether Brooke would improve if doctors there extracted the fluid that was causing the respiratory distress. In the end, she decided to ignore the “Final Letter.” She went upstairs, got dressed and, along with the caregiver on duty, put Brooke into the wheelchair-accessible van in the driveway and drove him to the emergency room.
This put Brooke back in the hospital with heavy-duty antibiotics treating yet another lung problem. During his three-week stay he recovered enough to make his own medical decisions again — which is when he consented to the insertion of the feeding tube. He also met with a palliative-care expert, who suggested trying one more pain treatment: low-dose methadone around the clock, five milligrams at exactly 9 a.m. and exactly 9 p.m., every day. With the methadone, Brooke’s pain was at last manageable. Now when he reflects on that hospitalization, he thinks of it as having a “happy ending.” In the “Death and Dying” folder is one last penciled note from Peggy dated Aug. 18, 2012: “10:37 a.m. Brooke says he wants to ‘soldier on’ despite difficulties.”
A couple of days after Brooke and Peggy talked about his not wanting anyone to speak for him, the subject came up again. Peggy raised it as we all sat in the living room. At first she did all the talking, unwittingly acting out the very problem under discussion. So I interrupted with a direct question to Brooke. Why, I asked, do you think Peggy sometimes does the talking for you?
“I think it’s because she’s concerned about me and wants the best for me,” he said. He made the gesture I’d watched him make before, lifting the tops of his shoulders, over which he still has motor control, in a resigned-looking little shrug. In light of such pervasive dependency, that shrug seemed to say, how can a loving, well-meaning wife help but sometimes overstep in her eagerness to anticipate her husband’s needs?
I asked Brooke if Peggy ever misunderstood what he meant to say.
“I don’t know, ask her,” he said. But Peggy saw the irony there and urged Brooke to speak up for himself.
“Occasionally, yes,” he said, though he couldn’t think of any specific instances.
When she makes a mistake, I asked, do you ever correct her?
“No, because I don’t want to upset her.” His brown eyes got very big.
She: “It would be O.K.”
She: “It would help me if you would say to me — ”
He: “O.K., O.K., O.K.”
She: “I think this issue is especially important. . . . What you’ve wanted has fluctuated a lot, and part of it is to try to figure out what’s genuine and what’s a part of response to the pain. That’s the hardest part for me, when you say: ‘I don’t want to go to the hospital ever again, I don’t like being in the hospital and I don’t want to be sick. If the choice is going to the hospital or dying, I’ll take the dying.’ ”
Peggy turned to me. She wanted me to understand her thinking on this. It’s so hard to know what Brooke wants, she explained, because there have been times when she has taken him to the hospital, and he later says that she made the right call. It’s so hard, she repeated. She has to be able to hear how a transient despair differs from a deep and abiding decision to die. She believes he hasn’t made that deep, abiding decision yet, despite the “Final Letter.”
She understands him well enough, she told me, to know when his apparent urgency is just a reflection of his dramatic way of presenting things: his deep voice, his massive size, his grimaces. “Brooke is very expressive when he’s in his full self,” she said.
Watching the dependence, indignity and sheer physical travail that Brooke must live through every day, Peggy told me, she doesn’t think she would have the stamina to endure a devastating injury like his. “It seems not what I’d want,” she said when I asked if she would choose to stay alive if she were paralyzed. While she might not want to persevere in such a constrained and difficult life, she believes that Brooke does want to, and she tends to interpret even his most anguished cries in a way that lets her conclude that he doesn’t quite mean what he says. But she worries that others in his life, even the caregivers who have become so close to him, might not be able to calibrate the sincerity of those over-the-top pleas and might leap too quickly to follow his instructions if he yelled out about wanting to end it all.
Suzy Quirantes, the senior member of the caregiving team, a trained respiratory therapist who has been with Brooke since the day he came home in 2010, sees it a bit differently. “I’ve worked with death a lot,” she told me. She thinks there have been times when Peggy has been unable to hear Brooke’s heartfelt expressions of a desire to die. “Last year, right after the feeding tube, he kept refusing his therapies,” she said. “And I said, ‘If you’re really serious, if you’re done, I need you to be very clear, and you need to be able to talk to Peggy so she understands.’ ” He never did talk to Peggy, though — maybe because he wasn’t clear in his own mind what he wanted. “He has said, ‘I’m done,’ and then when we kind of talk more about it, he gets scared,” Suzy said. “He says: ‘What I mean is I’m done doing this stuff in the hospital. But I’m not ready to die yet.’ ”
The tangled, sometimes contradictory nature of Brooke’s feelings has led to subtle shifts in Peggy’s scholarly thinking. She still believes that, whenever possible, people have the right to choose when and how to die. But she now better understands how vast and terrifying that choice really is. “What has changed,” she told me, “is my sense of how extremely complex, how extremely textured, any particular case is.” This realization is infinitely more fraught when you’re inextricably invested in the outcome and when the signals your loved one sends are not only hard to read but also are constantly in flux.
The only consistent choice Brooke has made — and he’s made it again and again every time he gives informed consent for a feeding tube or a diaphragmatic pacer, every time he permits treatment of an infection or a bedsore — is the one to stay alive. This is the often-unspoken flip side of the death-with-dignity movement that Peggy has long been a part of. Proponents generally focus on only one branch of the decision tree: the moment of choosing death. There’s much talk of living wills, D.N.R. orders, suicide, withdrawal of life support, exit strategies. Brooke’s experience has forced Peggy to step back from that moment to an earlier one: the moment of confronting one’s own horrific circumstances and choosing, at least for now, to keep on living. But the reasons for that choice are complicated too. Brooke told me that he knows Peggy is a strong person who will recover from his death and move on. But he has also expressed a desire not to abandon her. And Peggy worries that sometimes Brooke is saying he wants to keep fighting and stay alive not because that’s what he wants, but because he thinks that’s what she wants him to want. And to further complicate things, it’s not even clear what Peggy really wants him to want. Her own desires seem to shift from day to day. One thing that doesn’t change, though: She is deeply afraid of misunderstanding Brooke’s wishes in a way that can’t be undone. The worst outcome, to her, would be to think that this time he really does want to die and then to feel as if she might have been wrong.
Since Brooke’s accident, Peggy has continued to advocate for people seeking to die. She went to Vancouver in late 2011 to testify in court in the case of Gloria Taylor, a woman with ALS who wanted help ending her life when she was ready. And in 2012, she presented testimony by Skype in the case of Marie Fleming, an Irishwoman with multiple sclerosis who was making a similar request. The plaintiffs were a lot like Brooke, cognitively intact with progressively more useless bodies. But they felt a need to go to court to assure they would have control in the timing of their own deaths. Brooke has not. Perhaps that’s because he believes that Peggy will follow through on a plan to help him die if that’s what he ultimately chooses.
Those seeking to end their lives are up against opponents who say that helping the terminally ill to die will lead eventually to pressure being put on vulnerable people — the elderly, the poor, the chronically disabled, the mentally ill — to agree to die to ease the burden on the rest of us. Peggy doesn’t buy it. The scholarly work she is most proud of is a study she conducted in 2007, which is one of the first to look empirically at whether people are being coerced into choosing to end their lives. Peggy was reassured when she and her colleagues found that in Oregon and the Netherlands, two places that allow assisted dying, the people who used it tended to be better off and more educated than the people in groups considered vulnerable.
What Peggy has become more aware of now is the possibility of the opposite, more subtle, kind of coercion — not the influence of a greedy relative or a cost-conscious state that wants you to die, but pressure from a much-loved spouse or partner who wants you to live. The very presence of these loved ones undercuts the notion of true autonomy. We are social beings, and only the unluckiest of us live in a vacuum; for most, there are always at least a few people who count on us, adore us and have a stake in what we decide. Everyone’s autonomy abuts someone else’s.
During Peggy’s cross-examination in the Gloria Taylor trial, the Canadian government’s lawyer tried to argue that Brooke’s choice to keep living weakened Peggy’s argument in favor of assisted suicide. Isn’t it true, the lawyer asked, that “this accident presented some pretty profoundly serious challenges to your thinking on the subject?”
Yes, Peggy said, but only by provoking the “concerted re-re-rethinking” that any self-respecting philosopher engages in. She remained committed to two moral constructs in end-of-life decision making: autonomy and mercy. “Only where both are operating — that is, where the patient wants to die and dying is the only acceptable way for the patient to avoid pain and suffering — is there a basis for physician-assisted dying,” she told the court in an affidavit. “Neither principle is sufficient in and of itself and, in tandem, the two principles operate as safeguards against abuse.”
One morning in April, I called to speak with Peggy and Brooke. Peggy told me that when I was there in February, Brooke had an undiagnosed urinary tract infection that affected both his body and his clarity of thinking. It had since cleared up, she said. “He’s a different person than the one you saw.” The possibility that he’d begun a true cognitive decline was averted, at least for the time being.
“I’m cautiously happy about life in general,” Brooke said on speakerphone, stopping between phrases to catch his breath. “I’m getting stronger. Working hard. Loving my teaching. My friends and caregivers. My wife.”
I asked about Brooke’s “Final Letter” from last summer. I was still trying to understand why Peggy had ignored it, just days after she typed it up for him, and instead took him to the E.R. to treat his pleural effusion. Why hadn’t she just let the infection end his life?
“Brooke had always said, ‘I’m willing to go to the hospital for something that’s reversible, but I don’t want to die in the hospital,’ ” she said, as Brooke listened in on the speakerphone. So she had to “intuit” whether this was something reversible, and she believed it was. “This didn’t feel like the end,” she said, “but of course you don’t know that for sure.” In addition, there was that image in her mind of Brooke’s ideal of a “generous death.” It’s hard to say whether she’ll ever think conditions are exactly right for the kind of death Brooke wants.
The next day I learned that a few hours after my phone call, Brooke suddenly became agitated and started to yell. “Something bad is happening,” he boomed. “I’m not going to make it through the morning.” Peggy and the caregiver on duty, Jaycee, tried to figure out what might have brought this on, just hours after he told me he was “cautiously happy.” He had gone the previous two nights without his usual Klonopin, which treats his anxiety; maybe that was the explanation. Or maybe discussing his “Final Letter” with me, remembering the desperation of that time, had upset him. He was also getting ready for the first class of a new semester, covering the second half of “Moby-Dick”; maybe he was experiencing the same teaching anxiety that had plagued him his whole career.
Deciding that Brooke was having a panic attack, Peggy told Jaycee to give him half a dose of Klonopin. She did, but things got worse. Brooke’s eyes flashed with fear, and he yelled to Peggy that he was about to do something terrible to her — meaning, she guessed, that he was going to die and leave her alone. Finally he announced that he wanted to turn off all the machines. Everything. He wanted to be disconnected from all the tubes and hoses that were keeping him alive. He was ready to die.
Peggy and Jaycee did what he asked. They turned off the ventilator and disconnected it from the trach, and placed a cap at the opening in his throat. They turned off the oxygen. They turned off the external battery for the diaphragmatic pacer. They showed Brooke that everything was disconnected.
Brooke sat back in his wheelchair then and closed his eyes. There were no tears, no formal goodbyes; it all happened too quickly for that. He sat there waiting to die, ready to die, and felt an incredible sense of calm.
Two minutes passed. Three minutes passed. He opened his eyes and saw Peggy and Jaycee sitting on stools, one on either side, watching him.
“Is this a dream?” he asked.
“No, it’s not a dream.”
“I didn’t die?”
To Brooke, it was a kind of miracle — all the machinery had been shut off, just as he asked, but he was still alive. He felt refreshed, as if he had made it through some sort of trial. He asked Jaycee to reattach everything, and three hours later, after he had a nap, his students arrived to start the new semester, and Brooke began teaching “Moby-Dick” again.
But it was no miracle. “I know what his medical condition is,” Peggy told me later, out of Brooke’s earshot. “The reason he didn’t die is he’s not at the moment fully vent-dependent anymore. He can go without oxygen for a while, and he can go with the pacer turned off for some time.” She didn’t say any of this to Brooke. “It seems to have been such an epiphany, such a discovery, when he woke up and discovered he was still alive,” she said. “I don’t really want to puncture that bubble.”
If for some reason Brooke had become unconscious, she and Jaycee would have revived him, Peggy told me, because she didn’t believe he really wanted to die. She thinks what he really wanted was to believe he had a measure of control, that he could ask for an end to his life and be heard. “We showed him that we would do what he asked for,” she said, “and he thought it was real.” But it wasn’t real, I said. It all sounded like an elaborate end-of-life placebo, an indication that in fact he was not in control, that he wasn’t being heard. Peggy laughed and did not disagree.
She’s not good at keeping secrets from Brooke, though, and by the time I contacted them both by Skype later in the week, she’d told him the truth about that afternoon. In retrospect, Brooke said, the whole thing seemed kind of comical. He mimed it for me, leaning back with his eyes closed waiting for the end to come, then slowly opening them, raising his eyebrows practically to his hairline, overacting like a silent-film star tied to the tracks who slowly realizes the distant train will never arrive. He looked good, handsome in his burgundy polo shirt, mugging for the webcam. Some new crisis, some new decision, was inevitable — in fact, last month it took the form of another farewell letter, stating his desire to die in the spring of 2014, which is when he expects to be finished teaching his next course, on “Don Quixote.” But at that moment, Brooke was feeling good. “I think it will be a productive summer,” he said. And he and Peggy smiled.
Robin Marantz Henig is a contributing writer for the magazine and co-author, with her daughter Samantha Henig, of ‘‘Twentysomething: Why Do Young Adults Seem Stuck?’’
Editor: Ilena Silverman
Here is the update to the story:
Christaan Felber for The New York TimesBrooke Hopkins and Peggy Battin, appearing in the magazine last month.
Peggy Battin and her husband, Brooke Hopkins, were the subjects of my cover story last month on decision-making at the end of life. Peggy is a philosopher known for her defense of people’s right to choose the manner and timing of their own death. Brooke, a former English professor, was paralyzed in a bicycle accident in late 2008 and held on to life with a vengeance for almost five years. On Saturday, July 27, six days after the article was published in print, he finally decided he’d had enough.
It was a decision that was building for a long time, but by the end of July, a constellation of things had removed whatever ambivalence he previously felt. One was that he had trouble over the summer teaching “The Tempest” to his adult-ed students and was certain that — he realized with a touch of irony — his plans to teach “Don Quixote” in the fall were illusory. Another was that he was having more difficulty expressing his thoughts. So two of the things that had made his life worth living — teaching and long, thoughtful conversations with Peggy and their friends — were slipping away from him.
Brooke set his plan in action by phoning his stepchildren, Mike and Sara, who both live in Seattle, and asking them to come to his home in Salt Lake City. He also summoned two dear friends who were vacationing in Maine, and spoke by Skype to his sister in New York. On Monday, July 29, he went to see his doctor at the University of Utah Medical Center to make what he called an “official request” to have all his life-sustaining apparatus — ventilator, diaphragmatic pacer, external oxygen, cardiac pacemaker, feeding tube — turned off or removed and to be referred to hospice care.
Peggy, ever the optimist, asked the doctor for one more round of blood tests to be sure Brooke’s desire to die wasn’t caused in part by an undiagnosed infection that might be clouding his thinking — something had happened in the past. The blood- test results came back clean. The people who mattered to him were nearby, and Brooke was ready.
But Peggy wasn’t quite. When the hospice physician and nurse arrived on Wednesday morning to finish enrolling Brooke into their care, they asked if he would like to set a date for the ventilator withdrawal to take place. “Today,” Brooke said, stunning everyone, especially Peggy. The hospice workers said they needed a few hours to assemble the medications he would need, especially the morphine that would keep him from suffering from “air hunger” as his breathing support was dialed down — a terrifying potential side effect of being taken off a ventilator. They said they’d be back at 3 o’clock, but Peggy suggested that they should just come back the next day, according to an article in The Salt Lake City Tribune. But Brooke insisted on doing it that day: “I don’t want there to be a tomorrow.”
With several hours before 3, Brooke phoned some old friends to say farewell and then remembered one preparation he had not yet made: choosing a headstone for the grave site he and Peggy had picked. So he and his entourage went off to the Salt Lake City Cemetery, just a few blocks away, on what they called the Hopkins Liberation March. Sara — who stopped with her mother on the way back to get an ice-cream cone — took a photo of the excursion (second in the gallery). And then everyone assembled again at the house. The hospice physician gave Brooke a sedative, and Brooke sat in his wheelchair for a while with his stepchildren, his friends, a few of his favorite caregivers and his wife. He said he was getting sleepy, and he was put into bed. Peggy got in beside him. A gospel song he had chosen for the occasion, Marion Williams’s “My Soul Looks Back,” played on the stereo.
Peggy nestled into Brooke’s shoulder as the vent was dialed down and the morphine was delivered so he wouldn’t feel like he was strangling. “I lay there and could hear his breathing rate get slower, then less regular,” she told me by telephone a few days ago. “A breath and then a space, and then a breath and then a long space, and then a breath and then a very long space, and then a breath. You knew that one of these breaths would be the last, but you never knew which one.”
After the breath that turned out to be the last, Peggy told me, she lay next to Brooke for a very long time, her hand on his face, feeling the warmth leave his body. She was crying, wishing she could have asked him to wait just a little while longer, yet knowing he didn’t want to. She took some solace remembering that when the hospice doctor had said that morning, “Yes, we can help you,” Brooke looked happier than he had in a long time. Sara took aphoto of Brooke at that moment (third in the gallery), his huge white smile practically bursting through the lens. The “pure elation” of his expression, Peggy said, was what finally convinced her that he knew his mind and was even taking strength from his decision to die on that day, and on his own terms.
Later, Peggy told the Tribune reporter, Peggy Fletcher Stack, that “it was peaceful and painless, just as he wanted it” — close to the kind of ending he described to me earlier as a “generous death.”
A big memorial service is planned on the University of Utah campus for Sunday, Aug. 25. Brooke chose many of the musical and poetry selections, among them a friend’s harmonic rendition of “Amazing Grace” and a reading from Wordsworth’s “A Slumber Did My Spirit Seal.” He also asked that the service include the “Pavane,” by Faure — which, Peggy said, “always makes us both cry.”
The following is a nurse’s description of her experiences with the dying and their regrets. Notice how people’s regrets tend to be areas of growth that a person never fully realized.
A palliative nurse has recorded the top five regrets of the dying. Photograph: Montgomery Martin/Alamy
There was no mention of more sex or bungee jumps. A palliative nurse who has counselled the dying in their last days has revealed the most common regrets we have at the end of our lives. And among the top, from men in particular, is ‘I wish I hadn’t worked so hard’.
Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, which gathered so much attention that she put her observations into a book called The Top Five Regrets of the Dying.
Ware writes of the phenomenal clarity of vision that people gain at the end of their lives, and how we might learn from their wisdom. “When questioned about any regrets they had or anything they would do differently,” she says, “common themes surfaced again and again.”
Here are the top five regrets of the dying, as witnessed by Ware:
1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
“This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made. Health brings a freedom very few realise, until they no longer have it.”
2. I wish I hadn’t worked so hard.
“This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret, but as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.”
3. I wish I’d had the courage to express my feelings.
“Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.”
4. I wish I had stayed in touch with my friends.
“Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.”
5. I wish that I had let myself be happier.
“This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content, when deep within, they longed to laugh properly and have silliness in their life again.”
What’s your greatest regret so far, and what will you set out to achieve or change before you die?
Music therapy is often a wonderful additional service offered to hospice patients and family’s at the end of life. In an interesting twist, this article describes people being escorted out of this world with song.
Deathbed Singers, Threshold Choirs, Grow To Comfort Sick And Dying
Posted: 05/02/2013 6:42 am EDT | Updated: 05/02/2013 9:19 pm EDT
by Jaweed Kaleem
WASHINGTON — Always face the person in the chair. Sense their breath, the rising and falling of the lungs, the blood’s flush on the cheeks. Watch the loosening and tightening of the muscles, the movement of the eyelids, how the hair on their arms straightens up. Don’t stand out. Speak softly. Blend in with the voices.
This was the advice of Ellen Synakowski to members of the Washington, D.C., Threshold Choir, only a few months into its existence. Their job: to use song to comfort the dying through the end of life.
As if repeating a mantra, they sang in unison as they rehearsed: “It’s alright, you can go/ Your memories are safe with us/ It’s alright, you can go/ Your memories are safe with us.”
“Words are good for many things, but they don’t seem sufficient when it comes to death. The feelings are just too deeply intense and words are too inadequate,” said Synakowski, a 55-year-old former academic journal editor who has always had a hobby of singing, whether it’s to the car radio or in a community chorus. “But music … music can reach those places where words alone can’t go.”
Death used to happen solely at home or in a hospital, with company limited to family, close friends and clergy. Solemn music would be reserved, perhaps, for the funeral. But as the options for the end of life have grown to include hospice, palliative care and other avenues that recognize not only physical but also emotional and spiritual well-being, Synakowski and like-minded volunteers are offering another service to the dying: soothing through a cappella song.
Each week, Synakowski and between five and 10 people gather around an imaginary bed to practice original songs written for the dying. The D.C. circle formed in January, and is one of the newest in a little-known, mainly U.S.-based network that began in Northern California 13 years ago and now includes dozens of groups across the country.
In the years before launching the choir, Synakowski was a theater critic, a parenting newspaper staffer and an editor at a physics journal. Now an aspiring creative nonfiction writer, she spends her days memorizing songs, calling hospices and hospitals to gauge their interest in deathbed singers, and placing ads seeking members in coffee shops, churches and newspapers. But it’s not easy to find volunteers and she’s just started to look for friendly care facilities that may house those who are dying and willing to listen.
“Do not initiate touch. If someone reaches out to you, you can respond,” she told the men and women gathered to practice in April in a massage school classroom in a nondescript, concrete office building that donated its space. It was a Wednesday night, and the singers, most in their 20s and 30s, had rushed in from their day jobs. They included a legal secretary, a massage therapist and an acupuncturist. “If someone asks you for water, or to adjust them in their wheelchair or bed, we can’t,” Synakowski said. That’s up to the nurse. They are singers, and singers only.
As if it were a worship service, she opened the meeting with a testimony, reading a letter from a woman who recently had another choir in California sing to her ailing mother who is in her late 80s. The students had never performed for the ill or dying, and they needed encouragement and inspiration.
“When you came to our church and sang, I had more energy than I have had in many months. When you and the choir sang to my mom, I felt your singing was able to hold a space open that we all fear. That ‘space’ could be death or just the struggle of sickness, and when it’s held open like that, we are less alone in it…When you sang, your voices had a kind of wisdom of being in dark places or feared places … My mom told me the feeling overwhelmed her, while you were all singing to her, of not being afraid to die.”
The D.C. choir practices for 90 minutes each week at the Potomac Massage Training Institute, where Synakowski is also a student. Laureen, the acupuncturist, joined after seeing a flyer at Starbucks seeking people who could “communicate kindness” with their voices. Becca, the legal secretary, had taken a class at the massage school, through which she met Synakowski. She brought her friend Leah, who has wanted to work with the dying ever since her brother died of cancer.
It will take six months, possibly up to a year, before the choir can reach its goals: having each member memorize 30 songs, and reaching enough understanding of the dying process and the effect sound can have during it, including receiving hospital and hospice volunteer certification.
For now, they prepare.
Synakowski’s husband and one or two men come to each rehearsal, though most Threshold Choirs are made up of only women. They’re located in nearly every major American city, and meet once or twice a month to practice. Each choir varies in its style and composition, though the majority skew older than 50 on average. They visit by request only to hospitals, hospices and private homes. The service is free, and because of limited resources, the groups usually don’t advertise unless they are just getting started. Oftentimes, it’s a chaplain, social worker or doctor who asks for them.
Two to three singers will go to a bedside, and they pick songs based upon what a patient or the patient’s family wants. The tunes can be slow or upbeat, and emotional or lighthearted, like “Take Me Out to the Ballgame,” though most are original. At first, choirs sing two or three songs to gauge a person’s response. Sometimes, the recipient will move a finger, mouth a “thank you” or will change their breathing and relax their muscles. At the end of life, when human functions began to slow and cease, the signal for “I like this” can be as simple as a blink. Sessions last between 15 to 45 minutes, depending on the patient.
Family members are given song sheets so they can join in or continue after the singers are gone, though choir members themselves prefer memorization. The lyrics aren’t religious, and are meant for those who may be spiritual but don’t follow a strict dogma. It’s rare for a choir member to witness a patient’s last breath. Most people prefer to die alone or in the presence of family, say singers who have performed at deathbeds.
So far, Synakowski can sing just 10 pieces from memory. And while she has attended choir workshops in New York and Ohio, she has yet to sing to the dying. Searching fruitlessly for a choir since moving to D.C. nearly four years ago, she became tired of waiting and recently launched her own. Maybe she hadn’t sung to the dying before, she thought, but she loved to sing, was taught by the pros and felt at ease with death.
When the D.C. singers gather, Synakowksi doesn’t just train them in music, but poses questions about the end of life. What role does song play in transitions? What do they want to hear in their last week alive? The aim is to steer their minds toward thinking about the death that will soon surround them, and to weed out the uncomfortable. She starts by sharing her own experience.
Growing up in Lincoln, Maine, she sang in nursing homes with her Girl Scout troop. She went to her first funeral, for her aunt who died of ovarian cancer, when she was in third grade, and has vivid memories of the open casket and the raw grief in her rather stoic family. She was in her high school’s chorus, and was in a gospel choir as an adult until one of her vocal chords started to get chronically swollen about six years ago, making it tiring to sing for extended periods.
When her father died of a septic aneurism back home in 2000, she joined her siblings and mother in touching him, holding his cheeks, his legs and his feet, though she never thought to sing. When her mother was dying eight years later, Synakowski remembers rushing during the two-hour commute from the Bangor airport to her childhood home and spontaneously breaking out into song: “Swing low, sweet chariot/ Comin’ for to carry me home.” While singing, she got a call that her mother had died. It was one of the first times she realized “the transcending energy of music,” she says.
“I feel almost responsible to show up and do this because I understand not being (alive),” she says.
Syankowski first heard about the bedside choirs six years ago, when she lived in the San Francisco Bay Area, where the family moved for her husband’s job as a physicist. She came across the idea the way most people do: through word-of-mouth. But between work and taking care of two kids, it wasn’t until recently that she could manage the time to get involved.
There are 19 choirs in Northern California, the epicenter of the deathbed singers’ movement. They’re each aided in one way or another by Kate Munger, the founder and executive director of Threshold Choir. A 63-year-old resident of Inverness, Calif., 40 miles north of San Francisco, she’s a lifelong singer and former elementary school music teacher.
Munger, too, remembers the first time she realized the power of song at death. It was early November in 1990, when her close friend Larry was dying of AIDS.
“I found myself doing chores all morning and was supposed to sit by him in the afternoon, but was terrified when the time came,” recalls Munger. “He was comatose but agitated.”
She was upset, afraid and confused. So she did what she always did in times of trouble: She sang.
“I sang the same song for two-and-a-half hours. As soon as I started singing, he started to calm,” she says. The song was Gail McDermott’s “Hello, Moon:” “There’s a moon/ There’s a star in the sky/ There’s a cloud/ There’s a tear in my eye/ There’s a light/ There’s a night that is long/ There’s a friend/ There’s a pain that is gone/ Long are we waiting awakening/ Long are we singing this song.”
It took until until 2000, and many years between of Munger teaching music to kids, for the first choir to begin. Launched in El Cerrito, Calif, its first client was a terminally ill friend in her 50s with Lupus. In small groups, the original 15 members sang to her weekly in the nine months before she died, and she gave them feedback. Soft, blended voices felt better, she explained. Singers learned to read her body language. Even the smallest twitch of a limb could mean she was enjoying or put off by the music. At her death, they sang to her for hours on end.
Today, Munger leads Threshold Choir full-time as a registered nonprofit. It has a small part-time staff, 100 chapters across the U.S. and one in Australia, and a repertoire of 500 original songs written in a dozen languages. Most are no more than two minutes long, and have been perfected at annual camps that members organize in Northern California. The most recent one in April at a retreat center in Sonoma County drew 140 women. The titles of songs written and sung during those five days invoke wonder, ease and tenderness: “Welcome Home,” “May Peace be with You,” “What Light Do You Shine in the World.”
“There is no audition process to join. All I ask is that you feel the shiver when you hear about our work,” says Munger. “A mother’s heartbeat is the first sound that each of us hears. It feels to me that women’s bodies are the guardians of life entering this world and it feels right that we will be guardians of the gate out.”
Experienced soloists are often not the best fit because “projection of voice is not the goal, softness and comfort are,” says Munger. She, Synakowski and other choir leaders encourage those who like to sing but lack professional experience to join. It’s easier to teach them to mix their voices into the group’s, sing softly and focus on the dying instead of themselves.
The Threshold Choirs’ ultimate purpose may not be a creative one, but one that’s psychosocial. One of the hardest parts of dying, say those who have been at bedsides or been close to death themselves, is not pain but fear of the unfamiliar — of a stopping point — even for those who believe in an afterlife. Feelings of guilt and regret, too, can stress the body and mind.
While bedside singers may be unique in American culture, it’s not unprecedented. In some Hindu and Buddhist practices, hymns are sung near those who are dying, while mantras are chanted into the ear at the moment of death. In the Middle Ages, French Benedictine monks became famous for establishing infirmaries across Europe for the terminally ill, where they used Gregorian chants to soothe the dying. In more advanced hospitals and hospices around the nation, music therapists are employed to use instruments, such as harps, to calm the ill. And an emerging academic and medical field, music thanatology, is studying the effects frequency and tone have on a dying person, from changes in heart rate, temperature and respiration to better sleep and reduction in stress. Studies that have scanned brain waves near the time of death have indicated that hearing is one of the last senses to be lost.
“Our culture is coming to a great awareness of the role of song and music when it comes to pain, death and grief,” says Joy Berger, who teaches in the music therapy program at the University of Louisville and is the director of education for Hospice Education Network.
Diana Sebzda, the director of bereavement at the Karen Ann Quinlan Hospice in Newton, N.J., says she has often seen music used for terminally ill patients. It seems “to bring about a sense of peace to the dying by calming down their terminal restlessness and for the family bedside,” she says. “Often, the hospice team will request the music continue to play, even after the loved one has died, because it helps create an emotional environment to respect the transition period of the loved one who died.”
But deathbed songs can also go wrong. Research is still being done on how music affects the dying, says Berger. “Especially if the musicians are not clinically trained music therapists, assumptions and mis-uses of music can occur with … what music is selected, and outcomes to expect.”
“Music should never be imposed upon another, but rather should be empowering with and for the dying person. And, the same power of music to engage one’s emotions, memories, and memories can ignite overwhelming pain,” Berger says.
Some of the most traditional or least-equipped hospitals and hospices still don’t have music-therapy programs, let alone a relationship with deathbed singers. And the cooperation and interest among medical staff varies when it comes to Threshold, though personnel are typically asked to listen in and the choirs’ songbooks include appreciation songs for nurses and doctors. Once at a hospital in California, says Munger, two of her singers were pushed to sing for a patient who was in pain by a “desperate” nurse, even though they had not been invited. “So they started singing for Mr. Jones who sat bolt up in bed and ordered them out.”
While more experienced choirs have seen broad success in gaining membership and clientele, it’s a struggle for the newcomers in D.C. People come and go. Synakowski and her husband, Ed, are the constants, though others have started to come more regularly. She says local hospitals and hospices have be “very receptive” to the idea, thought she still doesn’t know who, exactly, the choir will sing to.
“You can’t just go around saying you are singing to people who are dying in beds. Some people are very uncomfortable with it,” Synakowski says. “I’m confused about how to market it.”
When she’s asked to explain what she does or when she makes a flyer, she leaves the concept a vague: “We sing to people at tender times.
With a group so focused on the dying, its rehearsals are often equally meditations and conversations on death as they are chances to harmonize. In the middle of the April practice, Synkowski asked singers to reflect on the role of music in transitions and what led them to the music and the dying.
Laureen Gastón, the acupuncturist who found one of Synakowsi’s flyers at Starbucks, talked about her mother and sister, who died four weeks apart a year ago. She first learned of Threshold Choir songs last summer while attending a community singing group at church during a vacation in Maine. “At the time, I thought that the idea of a Threshold Choir was intriguing given my latest losses and how much I sang at their bedsides. It made sense that others would do the same for their loved ones, but to hear about an organized group was news. Last night, I found myself singing those songs, and it transported me right back there to the ones I love,” Gastón said.
“My brother had died from cancer. His favorite song was called ‘Change,’ and back when he was in high school he had a senior quote which was from the song, it was amazing how fitting it was,” said Leah Dick, a massage therapist who wants to specialize in serving cancer patients. “I sing that song over and over and over again” to remember him.
Synakowski thought of her son, Byron, who was born Sturge-Weber Syndrome, a rare neurological condition that usually affects one side of the brain. A port-wine stain on his forehead signaled the condition, which was caused by vascular malformations. Byron suffered hundreds of seizures within less than a year after his birth that resulted in 11 hospitalizations. Doctors had to remove half his brain when he was 10½ months old, and he could have easily died from bleeding during the surgery or a stroke afterwards. It was 1997, and she now realizes it was then that her path in death and song really began.
“I told them they didn’t have permission to keep him alive if he did not want to be here,” says Synakowski. She would touch his small hands, holding him in her lap before and after treatments, lulling him to sleep with what she knew could be the last words he would hear: “This little little light of ours/ We’re going to let it shine/ … We won’t let anyone (blow) it out / We’re going to let it shine.”
He survived and is now a high school sophomore. Though weak on one side of his body, he enjoys playing volleyball, and is close to becoming an Eagle Scout.
“Going through that baptism, it enables me to say I can go in there and be with a child who is suffering,” she says.
Recently, Synakowski has started calling pediatric hospitals, asking if they would be interested in allowing song in their checkup rooms. “It made me comfortable with the idea that babies’ lives can end. It’s not just older people. People always say phrases like ‘his time was cut short’ and things like that. I think we are giving a certain amount of time on this earth, and that’s that. It’s the time we have to live.”
For the dying, there is often certain goals or milestones that the person wants to experience before the end. Here is an interesting story about one such goal. While, as the article indicates, science doesn’t see the validity in the idea of people forcing themselves to live to a milestone, we have all heard countless stories of someone who outlives expectations to attend a family event or celebrate one more holiday.
Christopher Silas Neal
As my patient looked on, his wife took the framed photograph out of a nondescript manila mailer, the type with bubble wrap on the inside, and handed it to me gingerly. It was clear they both considered it to be precious cargo.
“You can see I made it to the wedding,” he said, smiling broadly, as I studied the image of him in a suit, locking arms with his granddaughter, the bride. The two of them were bordered by the opened doors of the church, stained glass windows on either side, his face bearing that familiar look of consuming love, joy and pride — along with a little fear, that at any moment he might start sobbing in front of all of his buddies and co-workers attending the ceremony. I have the same photograph in my own wedding album, of my father-in-law with my wife-to-be.
“You should have heard the gasp from everyone in the church when he came through those doors with our granddaughter,” his wife exclaimed. “I mean, no one thought he would even be there!”
“My granddaughter and I had been planning it for months, but we didn’t tell anyone,” my patient went on, explaining that he and his wife had raised the girl for several years while their daughter, who had gotten pregnant in her teens, could get back on her feet.
When it came to his health, my patient is the type of guy about whom you might say if he didn’t have bad luck, he wouldn’t have any luck at all. Years earlier, he was treated for colon cancer. Now, possibly as a result of that treatment, he had leukemia. But he also had a completely different type of bone cancer, and the kicker — advanced lung cancer.
He wasn’t the first patient I had ever treated with multiple cancers, and in general we approach people like him by going in order of treating the most serious cancers first, and working our way down to the less serious ones. In one respect, he was lucky: he looked a heck of a lot better than his medical chart. As leukemia and lung cancer often represent the worst of the worst, we tried treating both at the same time. The leukemia went into remission. The lung cancer didn’t.
Within oncology, it is taken as almost a truism that people die only after they have said their goodbyes to their immediate family, or achieved some life milestone. Countless times I have seen comatose patients linger until a child flies in from California, only to pass hours after that child’s arrival.
A study that appeared in The Journal of the American Medical Association in 2004 looked at whether people die soon after a milestone. In it, the authors analyzed death certificates from more than 300,000 people dying with cancer in Ohio from 1989 to 2000, and whether those people were more likely to die immediately after a birthday, Christmas or Thanksgiving. It turns out that these people were no more likely to die after these events than before, and the authors concluded that cancer patients are not able to postpone their deaths to survive such significant occasions.
The study was misguided, though: the authors asked the wrong question. The last time I looked forward to a birthday was half a lifetime ago when, for the first time, I could walk proudly into a bar without having to proffer my grungy fake I.D. And while I enjoy holidays, what motivates me to brave the traffic on I-80 with a car full of children and a DVD player on the fritz is not my enduring respect for pilgrims; it is the chance to be with the family I see far too infrequently.
“The weekend before the wedding was a close call,” my patient said. “I couldn’t move my leg or my arm, and that CT scan showed the lung cancer in my brain….” he trailed off.
“But that pill you prescribed really did the trick,” his wife picked up. “He could walk again after a few days.”
“Even if it hadn’t, if I’d had to tape my arm to my body and walk with a splint, I wouldn’t have missed it,” my patient said with a fierce look in his eyes.
I wanted to hang on to the photo, it represented such determination, but reluctantly handed it back. I said my goodbyes to them in clinic, then headed to the workroom, where one of the leukemia nurses approached me.
“When do you want to see him again — in four weeks or in five?” the nurse asked. I had the hardest time answering, and she gave me a knowing smile, understanding why I was hesitating.
“I don’t think it makes a difference, now that his granddaughter is married,” I answered.
He did come to clinic, just one more time. He was wearing a sweatshirt with the wedding photo silkscreened on the front, and underneath the caption, “Mission Accomplished.”
A few weeks ago, someone wrote an article about his confrontation with the notion that we are all going to die. It is a very touching and deeply thought provoking piece. I specifically liked his statement that he had decided at one point in life that he wouldn’t die.
So it has come to this. I am going to die. I wish I could tell you otherwise. I wish I had something more positive to say. For a long time things were fine. I reassured myself: I will not die. I reassured others, not so much by what I said as by my general demeanour. Don’t worry, I always seemed to be telling them, Nothing to be alarmed about, I will not die.
I have been thinking about this since I was a few years old, only a boy. A woman who’d drifted into our home and moved in with us, a real brokenhearted bundle of nerves, ran over her cat one day in the driveway. The cat died. It lay there and wouldn’t get up. It wouldn’t play or drink milk or anything. It was dead.My father explained it to me. He was delicate, careful with his words, almost apologetic when he explained it. Everything dies, that’s what he told me. He spread his hands in a gesture of helplessness. I could see the embarrassment in his face, as if this whole unseemly business of dying and being dead was somehow his fault. Forgive me, he seemed to be saying, The cat has died because all things die; forgive me.After he had explained it to me, I gave it a great deal of consideration. I was even-handed about it, I weighed up the pros and cons as fairly as I could, but in the end I decided this sort of thing just isn’t for me. Dying – it’s fine for cats, it’s fine for other people (strangers especially), but it’s not the kind of thing for me.So I decided I would not die.Of course there is a lot to be said for dying, I know that. Think of the alternative. Consider the indignity of watching your own children and your children’s children entering the slow decline of a second infancy. Think of the endlessness of old age; the terrible strain on a diminishing circle of perpetual carers; the constant expansion of aged care facilities, until finally entire cities would be nothing more than gigantic under-staffed nursing homes, crowded with those who have lived forever but have forgotten their lives and even their names. Or even worse, imagine living forever without ever forgetting, tormented by wounds of regret for everything you ever said and did, so that everything hurts more acutely with every passing year, world without end.Living forever is not all it’s cracked up to be, even as a boy I could see that. In the long run, it makes a great deal of sense for other people to die, for everyone to die. I wasn’t naive. I reconciled myself to the fact of death. Yet pondering all this at the age of three or four as I looked into the eyes of the small dead cat, I thought the universe ought to make an exception in my case.And yet here I am, dying after all. How did it ever come to this?I went to see a doctor and he gave it to me straight. It is my heart, that’s what he told me. Apparently I have a condition that makes my heart wear out after the first seven or eight decades of my life. Subtract from that a few years for every unhealthy lifestyle choice I’ve ever made along the way: smoking, drinking, not jogging, using real butter instead of margarine, too much salt, too much sugar, too much of the wrong sort of fat, not enough of the right sort of fat, too many of the wrong kinds of drugs, not enough of the right kinds, too much sitting in front of the television, not enough rest, not enough vegetables, too many non-organic vegetables with all those nasty carcinogens sprayed all over them, all subtracting year after year after year from an already perilously short life. Taking everything together, I’ll be lucky if I get another forty years out of this heart. Less than thirty if my grandfathers’ lousy tickers are anything to go by. Bloody genes, can’t live with them, can’t live without them.If I knew what was good for me I’d be running around the block right now or lining up for a gym membership instead of squandering my remaining time sitting in a chair (subtract 4 years) having coffee (subtract 1.5) and a butter croissant (subtract 2) and writing down these dying words.What should I tell you? What can I say for myself? What message should I leave you from beyond the grave? That I should have used margarine after all? That organic groceries are really worth the extra expense, when you factor death into the equation? Or maybe something more personal: ‘Dad, you were right about death. I forgive you.’ How would that sound?No, death and dying notwithstanding, I guess all I’d really like to say is that I’m glad to have been alive. That alive is a very good thing to be, and I have not a single word to say against it. That I have loved songs and food and drink and night time and the way friends’ voices sound around a campfire in the dead of night. That I have loved animals, especially dogs and cats, and if I had ever got to know horses properly I would have loved them too. That I have seen whales, have witnessed their rolling bigness, and have loved them very much. That I have loved books and reading, have loved re-reading certain books and remembering what it was like to read them for the first time. That I have loved the faces of my friends (I hope somebody will remember those faces after I’m gone). That I have loved strangers’ faces too, old men and old women and beautiful women whose faces I fell in love with and never forgot even though I only saw them once, across a crowded room or in a train or on a bridge as I walked by. That I have loved my wife’s face and my wife’s words and my wife’s skin and the way my wife thinks when she is happy or when she is sad or when she is tired or first wakes up, wide awake and already hatching plans while I am still trying to dream. That I have loved my –My children.As I sit here now, as I sit dying, my heart slowly wearing out inside me, that is all I really want to tell you. I have loved all of it and I don’t have a word to say against it. To tell you the truth, I even love the things that I have hated. Doing wrong, being wronged, this whole miserable business of hurt and misunderstanding and mistakes. I have loved all that because I have loved forgiving and being forgiven. Yes, that’s what I have loved most of all. If I could do it all over again I would make all the same mistakes and let all the same mistakes happen to me too, if it only meant that I could have the chance, just once, to forgive, to be forgiven.Life is very wonderful, and the meaning of it all is the forgiveness of sins, that’s what I’d like to tell you. I am glad to have learned that. I am glad to have been alive and to have made so many mistakes and to have borne the brunt of so many too. It is wonderful, all of it.It is thirty years since the day my father explained death to me, since I looked into the wise dead eyes of the cat and understood. I’m trying, but I still haven’t reconciled myself to dying, not really. But when that faulty clock inside me stops ticking and there is no one about to wind it up again, I hope I will be able to die just as I have lived: forgiven.
The discussion of what is death is something that we try to avoid throughout our lives. For many, death talk is too frightening because it reminds us of our finiteness. In the article below, the author discusses how we can see death through naturalistic eyes while still attending to our religious and spiritual convictions.
Religious naturalist, evidential mystic, big history evangelist, and author of ‘Thank God for Evolution’
Death: Sacred, Necessary, Real
Everything we value is possible only because of death. The ancients couldn’t have known this truth revealed by science. We can no longer afford to remain ignorant of it; the cost is too high. Death is no less sacred than life.
Most people, whether religious or not, are tragically unaware of what has been revealed about death in the past few hundred years, through evidence. This ignorance now fosters untold suffering — for families and for society, as well as for individuals.
I am regularly asked (especially since I was diagnosed with cancer three years ago), “Do you believe in an afterlife? What do you think happens to us when we die?” My typical response is to make one or more of the following points…
1. As I discuss in “The Gifts of Death” section in my 2009 book, it is vital when thinking about death in the abstract, when contemplating the inevitability of our own demise or when grieving the loss of a loved one to call to mind the positive role of death in the Universe. Widespread ignorance of the now-indisputable fact that death is natural and generative at all levels of reality, coupled with our culture’s failure to interpret the science in ways that help us to feel the sacred quality of death, result in not only distorted but outright disabling views.
Honoring the creative role of death in the cosmos does not, of course, take away the anguish and grief we feel when someone or something we love dies. Such intense feelings are normal and healthy. They should be honored and allowed time to dissipate naturally, which can often take a year or two (and sometimes much longer). But what a gift to go through the grieving process while resting safely in a reality-based (even beautiful) big picture “container” that puts our personal loss in perspective! Death is assuredly not a cosmic mistake; it is not “the enemy.” Indeed, contrary to the writings of the Christian Apostle Paul, humans bear no responsibility for the existence of death in the Universe. And we don’t need to believe this; we know it. God (reality mythically personified) revealed it through science.
(Here you can sample testimonials from my wife and my last decade on the road that demonstrate the emotional gifts of a science-based perspective, meaningfully interpreted, even in such unspeakably painful cases as the tragic loss of a child. It is also important to bear in mind that Moses, Jesus, the Apostle Paul and Muhammad could not possibly have known what we know about death. This evidence-based understanding couldn’t have been revealed in a way that we could have received it, prior to telescopes, microscopes and computers.)
2. By taking the long view of “big history,” and thereby nurturing an extended sense of who I am, I begin to experience a “self” that does not stop with my skin. Earth is my larger Self. The Universe is my even larger Self: my Great Self. So, yes, “I” (in this expanded sense) will continue to exist even after “I” (this particular body-mind) comes to a natural end. Recognizing that my small self will soon experience death everlasting, I find deep comfort in knowing that my larger Self will live on. More, I am powerfully motivated to be in action today precisely because I do not ignore or deny my mortality. My human self has but a brief window of opportunity to delight in, and contribute to, the ongoing evolution of the body of life and human culture. Truly, this is it; now or never.
I am immensely grateful for both the comfort and the compulsion born of this sacred evolutionary perspective.
3. From a religious naturalist standpoint, it seems clear that we go to the same place we came from before we were conceived — the same “place” that trillions of other animals and plants have gone throughout Earth’s history whenever they perished. Some speak about this transition as “coming from God and returning to God.” Others prefer the imagery of “coming from mystery and returning to mystery.” Still others, as “coming from nothing and returning to nothing.” All are legitimate (as well as emotionally satisfying) ways of thinking and talking about what happens at death.
As to my own beliefs, I usually respond (with humor), “If it turns out that where I go isn’t the same place that all other animals, plants and bacteria have gone throughout Earth’s history, I’m gonna be pissed!”
4. A universal experience (whether or not we choose to admit it) is this: death is no less partnered with birth than a magnetic north arises only when there is also a south. From the moment we take our first breath, the outcome is ultimately death.
Any so-called “faith” that doesn’t include trusting that whatever happens on the other side of death is just fine is, in my view, really no faith at all. Fear of a terrifying, hellish after-death scenario, or hope of a blissful, heavenly after-death scenario are just that: fear or hope; not faith, not trust. As legendary Griefwalker and “Angel of Death” Stephen Jenkinson warns: “Not success. Not growth. Not happiness. The cradle of your love of life … is death.” (I highly recommend watching the documentary, “Griefwalker,” which is freely available online, here.)
5. The idea of being “rewarded” (condemned?!) with experiencing even one day of unnatural after-death existence would occur to me as hell, not heaven, were I to think of (or worse yet, witness from on high) a divinely decreed eternal torture of others who had in some way missed the mark. Adding to the repugnance would be knowing that those relegated to never-ending suffering included not only perpetrators of outright evil but also those condemned for nothing more than holding wrong beliefs — that is, beliefs different from mine.
6. Here is the way I discuss the subject of “the afterlife/what happens when we die” on pages 116-117 of my book, “Thank God for Evolution”:
My formal training for becoming a United Church of Christ minister culminated in an ordination paper that I wrote and then presented to a gathering of ministers and lay leaders. Titled “A Great Story Perspective on the UCC Statement of Faith,” my talk stimulated a host of comments and queries. A widely respected minister posed a question I shall never forget. “Michael,” he began, “I’m impressed with your presentation and with the evolutionary theology that you’ve shared with us. However, there’s a little boy who lives in me, and that little boy wants to know: Where is Emory?”
Emory Wallace, a well-known and beloved retired minister, had for nearly three years guided me through my ministerial training. He died suddenly, at the age of 85, just a few weeks before my ordination hearing.
“Where is Emory?” My mind went blank. I knew I needed to say something — after all, this was my ordination hearing — so I just opened my mouth and started speaking, trusting the words to come. My response went something like this:
Where is Emory? In order to answer that question I have to use both day language (the language of rational, everyday discourse) and night language(the language of dreams, myth and poetry). Both languages are vital and necessary, just as both waking and dreaming states of consciousness are vital and necessary. Like all mammals, we cannot survive without dreaming. It is a necessary function of our brain. Sleep is not enough; we must be allowed to dream.We, of course, know that day experience and night experience are different. For example, if you were to ask me what I did for lunch today, and I told you that I turned myself into a crow and flew over to the neighborhood farm and goofed around with the cows for awhile, then flew to Dairy Queen and ordered a milkshake — and if I told you all that with a straight face — you might counsel me to visit a psychiatrist. However, had you asked me to share a recent dream, and I told the same story, you might be curious as to the meaning of that dream — but you wouldn’t think me delusional.
So in order to respond to your question, “Where is Emory?” I have to answer in two ways. First, in the day language of common discourse I will say, Emory’s physical body is being consumed by bacteria. Eventually only his skeleton and teeth will remain. His genes, contributions and memory will live on through his family and through the countless people that he touched in person and through his writings — and that includes all of us.
But, you see, if I stop there — if that’s all I say — then I’ve told only half the story. In order to address the nonmaterial, meaningful dimensions of reality I must continue and say something like: “Emory is at the right hand of God the Father, worshipping and giving glory with all the saints.” Or I could say, “Emory is being held and nurtured by God the Mother.” Or I could use a Tibetan symbol system and say, “Emory has entered the bardo realm.” Any or all of these can be considered practically real, rather than factually real — that is, true within the accepted logic and understanding of mythic night language.
My response was well received in that meeting 22 years ago, and it has shaped my thinking ever since. Recently, I blended the core of that distinction into my Great Story talks and workshops. I am sure that my understanding of day and night language — language of reason and language of reverence — will continue to evolve and thus inform my preaching, my teaching and my personal relationship Reality.
“The Gifts of Death” — A Responsive Reading In Celebration Of Death
1. Without the death of stars, there would be no planets and no life.
2. Without the death of creatures, there would be no evolution.
1. Without the death of elders, there would be no room for children.
2. Without the death of fetal cells, we would all be spheres.
1. Without the death of neurons, wisdom and creativity would not blossom.
2. Without the death of cells in woody plants, there would be no trees.
1. Without the death of forests by Ice Age advance, there would be no northern lakes.
2. Without the death of mountains, there would be no sand or soil.
1. Without the death of plants and animals, there would be no food.
2. Without the death of old ways of thinking, there would be no room for the new.
1. Without death, there would be no ancestors.
2. Without death, time would not be precious.
ALL: What, then, are the gifts of death?
1. The gifts of death are Mars and Mercury, Saturn and Earth.
2. The gifts of death are the atoms of stardust within our bodies.
1. The gifts of death are the splendors of shape and form and color.
2. The gifts of death are diversity, the immense journey of life.
1. The gifts of death are woodlands and soils, ponds and lakes.
2. The gifts of death are food: the sustenance of life.
1. The gifts of death are seeing, hearing, feeling — deeply feeling.
2. The gifts of death are wisdom, creativity, and the flow of cultural change.
1. The gifts of death are the urgency to act, the desire to fully be and become.
2. The gifts of death are joy and sorrow, laughter and tears.
ALL: The gifts of death are lives that are fully and exuberantly lived, then graciously and gratefully given up, for now and forevermore. Amen!
The Science of What We Now Know About Death (That the Ancients Couldn’t Have Possibly Known)
When Death Gets Personal (podcast recorded just after I learned I had potentially deadly cancer)
Yes to the Universe (litany / responsive reading)
Evolution and the Revival of the Human Spirit (secular sermon by Michael Dowd)
Startull: The Story of an Average Yellow Star (evolutionary parable by Connie Barlow)
Death, Budgets, and Generational Justice (blogpost by Connie Barlow; also the following YouTube clip…)
In considering different perspectives on suffering, it is imperative to study and learn about Buddhist considerations of non-attachment. Before I considered becoming a chaplain, someone provided me with a copy of Advice on Dying by the Dalai Lama (it seems to not be available except as used). I recall finding the book to be an excellent resource for understanding life and death from the perspective of mindfulness. I cannot say the book inspired me to become a chaplain but it definitely gave a base from which to consider and contemplate much of what I have experienced in my role. The piece below is a good description of how death, dying and bereavement would play out from a Buddhist perspective.
Buddhism asserts that attachment is the primary source of suffering. So then detachment or “non-attachment” would be our ticket out of that pain. Except that it’s not so easy … letting go of a person, place, or thing that has our heart temporarily held hostage.
You may be grieving the death of a loved one, or the end of a friendship you had hoped would be more, or merely the realization that your father will never be able to give you what you need from that relationship. It seems as though every moment of this life is about letting go, of something or someone that is renting far too much space in our heads. And while there is no way I’d call myself a “let go” expert, I have done a considerable amount of research in this area. So the following are some techniques that … well… will at least get us started.
1. Live in the present.
One of the most beautiful descriptions of grief I’ve ever heard was from Owen Stanley Surman, M.D., a practicing hospital psychiatrist who lost his wife and wrote a memoir about it, “The Wrong Side of an Illness: A Doctor’s Love Story.” In my interview with him awhile back, I asked him how, exactly, does a person concentrate on the moment and know that love is a precious gift not to be taken for granted. He explained:
In Lezlie’s passing, I began to live in the present. Tragedy had cast a spotlight on the beauty of life and the power of love. In Swan’s Way, I learned from Marcel Proust that the past resides in what one has shared in love. Lezlie was with me. Given an opportunity to present at a conference in Jerusalem I explored the Via Dolorosa. At the 12th Station of the Cross, I gazed at the extraordinary crucifix and lit a candle. “Lezlie,” I said amid an outpouring of soul wrenching tears, “This one is for you!”
2. Trust the process.
So much of letting go is finding the right timing. You let go too prematurely, and your process is going to be harder and more time-consuming than it needs to be. You wait too long and things spoil… the relationship or the project. In Dennis Merritt Jones’s book The Art of Uncertainty, he includes this great quote about timing by Gary Zukav:
Fruit drops from the tree when it is ready. Staying too long, or moving too early, misses the mark. The mark is the appropriateness that causes the fruit to fall when it’s ready…. The process has its own timing, and it creates changes in your life when those changes need to happen.
3. Expect regression.
The act of letting go for me is less overwhelming when I go into it knowing that there will be days that I’m clinging for dear life to that person, place, or thing from which I need to detach, or “non-attach.” If I can go into this process recognizing the three-steps-forward, two-steps-back pattern, then I won’t fret when my footsteps start reversing, and I can celebrate any progress I have made.
4. Lose control.
If you think about it, we have trouble letting go because it requires relinquishing control. That’s frightening for a person like me who wants to hold the reins 24/7 so that I know exactly what’s coming next. Non-attachment is about swapping the things we know and can control for those things we don’t know and can’t control. But we must remind ourselves that just because we have never met them before, and are not familiar with them or their relatives, does not mean they are inherently bad or harmful. We essentially have to close our eyes and trust that we will find our way to a new, potentially better place. And that God will provide plenty of guides.
5. Make room.
My mom had a rule growing up that for every article of clothing that came into the house, one had to go out. The result was that my childhood closet didn’t look like my bedroom closet today. It was a tad tidier … a tad. This exercise was a simple ritual of making room for something new. If we can see the letting-go process as a transition to a new beginning, one full of potential and prospects–much like getting a nursery ready for a baby– then we can shift some of our energy and concentration from loss to opportunity. As Joseph Campbell says, “We must be willing to let go of the life we have planned so as to accept the life that is waiting for us.”
6. Break up the pain.
In Elisha Goldstein’s book, Mindful-Based Stress Reduction Workbook, he teaches you how to meditate through pain. Much like a woman does in labor—if you can break up the cycle of pain into pangs of acute pain, followed by interludes less-intense pain, then you can begin to manage it, and breathe through it. I have found the same with swimming. I will be sprinting, trying to make a short interval, and then I get two lap to regain my breath. If you process letting go that way, you can enjoy the brief reprieves between the periods of intense pain.
7. Identify false beliefs.
This one is geared more for those letting go of a toxic relationship. Inevitably we hang on to false beliefs about the person or about the relationship that impede the detachment process. In the past, when I’ve had to let go of an important friendship, I remind myself to focus on the facts, not the feelings. Her actions communicated a very clear message, even if I don’t want to accept that. At one point, I would write down the events so that I wouldn’t forget the hurt I felt when she would come back around and want to be my friend again.