Friday, August 23, 2013

More goodbye to Brooke

NewYorkTimes 6thfloorBlog
AUGUST 21, 2013, 3:13 PM
Choosing to Die After a Struggle With Life
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 that 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 a photo 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.”
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Sunday, August 18, 2013

On Brooke's Choice

U. of Utah English professor’s final odyssey to the great beyond
End of life • Paralyzed U. prof Brooke Hopkins takes his final odyssey to the great beyond as his family makes a painful decision to let him go.
Leah Hogsten | The Salt Lake Tribune Peggy Battin, daughter Sara Pearson and son Mike Battin say their goodbyes and throw kisses at the casket of Brooke Hopkins after his memorial service Aug. 2, 2013.
On a Thursday morning in late July, Sara Battin Pearson got an unexpected phone call from Brooke Hopkins, who jumped right to the point: “I want to die, Sara.”
It was the first time Sara had heard her 71-year-old stepdad express so emphatically his desire to be done with this life. Sure, Brooke, a beloved University of Utah emeritus English professor who was paralyzed in a 2008 bike collision, had said before that his pain was unbearable or that he doubted he would live through the night. But this time his words were less descriptive, more decisive — like a demand or an impassioned plea.
On the other hand, Mike Battin, Sara’s brother, had heard Hopkins say many times in the years after the accident that he wanted to die, but his request had grown increasingly urgent in recent months.
Students who took Brooke’s spring class on Moby-Dick were aware that he probably wouldn’t be around to teach Don Quixote in the fall. His in-home caregivers knew he was yearning for release.
And 72-year-old Margaret Pabst Battin — known as “Peggy” — Brooke’s wife of 27 years and a nationally renowned medical ethicist who specializes in end-of-life issues, had had numerous conversations with her husband about dying over the decades, but especially in the past year.
Often, though, he was ambivalent, Peggy felt, seesawing between desiring death and loving life.
When family members gathered July 31 at the couple’s Salt Lake City Avenues home to say their final goodbyes, hospice workers asked for an hour’s delay to get the appropriate pain medication. Peggy, wishing, perhaps, to hold on to him a little longer, suggested maybe they should come back “tomorrow.”
Brooke retorted, in his deep, hoarse voice, filled with frustration: “I don’t want there to be a tomorrow.”
A patient’s right • Conversations about when and how to die are much more common in families these days than they were even a few decades ago.
When life-supporting technologies such as ventilators were introduced, the thinking among many was that once such equipment was attached, it would be immoral or unethical to discontinue their use — even if the patient didn’t want to go on.
Slowly, through discussion, disagreement and debate, that worry has been replaced by an emphasis on a patient’s right to choose whether to continue such life support.
Several generations of doctors now have “grown up with the understanding that the physician’s sole obligation is not to prolong life at all costs but to abide by a patient’s wishes,” says Alan Meisel, a leading authority on end-of-life decision-making and founder and director of the University of Pittsburgh’s Center for Bioethics and Health Law.
There is now a “national consensus on end-of-life care,” Meisel says, “that it is permissible both legally and morally — and as a practical matter — to terminate life-sustaining treatment when patients no longer want it or when they left instructions [beforehand] that they wouldn’t want it.”
Even many religious guidelines do not oppose withdrawing such life-sustaining treatments.
“Discontinuing medical procedures that are burdensome, dangerous, extraordinary or disproportionate to the expected outcome can be legitimate; it is the refusal of ‘overzealous’ treatment,” the Catholic Catechism says. “Here one does not will to cause death; one’s inability to impede it is merely accepted.”
In Utah, the Advance Health Care Directive Act, enacted in 2008, recognized that “developments in health-care technology allow the unnatural prolongation of life,” explains Leslie Francis, a University of Utah law and philosophy professor who writes about advance directives, disabilities and access to medical care.
The law states that competent patients “should have the clear legal choice to accept or reject health care,” Francis says, quoting the statute’s wording, “even if rejecting health care will result in death sooner than death would be expected to occur if rejected health care were started or continued.”
It is important, she says, not to create conditions in which people are afraid to start a treatment for fear they can’t stop it later. “You don’t want a world in which you can’t try and see what kind of outcomes you can get.”
When patients conclude that they are done trying, hospice doctors and nurses can help family and friends respect the patients’ wishes.
“We want to make them comfortable, to allow them to let go,” says Carla Prepejchal, a Utah hospice nurse and case manager who was not involved in Brooke’s care but has tended to many dying patients. “We give medication to deal with any symptoms they may have — it could be agitation, air hunger, lashing out, vomiting, bleeding. But we don’t do anything to hasten someone’s death.”
The goal is “to control the symptoms,” Prepejchal says, “so patients have the highest dignity before they die.”
That’s the aim of Utah’s law, too, to permit patients to “die with a maximum of dignity and function and a minimum of pain” — in short, exactly what Brooke was seeking.
An exuberant life • Brooke and Peggy arrived at the U. the same year, 1975. He was fresh from Harvard with a background in 18th- and 19th-century British literature. She had a master’s degree in writing and a doctorate in philosophy from the University of California at Irvine.
He was a tall, handsome, lanky outdoor enthusiast, gourmet cook and a lively conversationalist. She was a fair-haired beauty and rigorous thinker, questioning every assumption, always arguing the opposing points of view.
Sparks flew from the start, and within a year, they moved in together. Seven-year-old Sara, Peggy’s daughter from a previous marriage, came to live with them. Her son, Mike, 2 ½ years older than Sara, visited on holidays and summers. The couple shared an action-packed academic life, traveled to exotic locales, danced all night in undiscovered backwoods blues joints and tasted a rich variety of spicy dishes and good wine.
They married in 1986.
Brooke became one of the U.’s most popular professors as he explored the works of Romantic poets and the genre of autobiography.
Peggy emerged as a pioneer in the field of bioethics, specializing in end-of-life questions. Suicide. Euthanasia. Do Not Resuscitate orders. When and how to die. She cranked out essays, compiled collections and edited volumes on death and medicine. Soon she was known for titles such as The Least Worst Death and, more recently, Ending Life: Ethics and the Way We Die.
Yet it was always about other cases, other people, other circumstances.
That is, until Nov. 14, 2008, when her husband, biking down City Creek Canyon, collided with another rider and broke his neck. Brooke became a quadriplegic, paralyzed from the shoulders down.
Many people with spinal-cord injuries say they want to die when they first learn the extent of their injuries and the challenges ahead. Research shows that if they make it through that initial year, most are ready to embrace life as it is.
That was clearly the case with Brooke, who developed a fierce desire to fight on, seeing his limitations as an “adventure.”
He labored diligently to breathe on his own and regain small movements in a few fingers and toes. He learned to navigate his wheelchair with his head and then with fingers on his left hand. He could write emails using voice-recognition technology and taught courses to retirees — many of them fellow educators — in his living room. Thoreau’s Walden, The Iliad, The Odyssey, The Aeneid, Dante’s Divine Comedy, The Canterbury Tales, Shakespeare’s sonnets and “The Tempest.”
But setback after setback — infections, pneumonia, spasms, sleeplessness, repeated hospitalizations — led to a slow, steady decline in the past year or so. He finally had to give up one of his great pleasures, eating, and be fed through a tube.
A person of great dignity, Brooke suffered daily, almost hourly indignities, from suppositories every morning and constant suctioning to being rolled over, poked and prodded, bathed and bothered.
Last summer, Brooke had had enough and wrote what he called his “final letter” to family and friends.
“Relentless pain corrodes the soul. Mine has been corroded to the point at which I simply no longer desire to live in this condition. … Is this selfish on my part? Maybe. If it is, I am deeply sorry. I am especially sorry for what it will do to Peggy, who has done so much to keep me going,” he wrote. “ … [Peggy’s and my] life together has been an incredible adventure. Oh, my God, what an adventure. Even after the accident. But the time has come.”
He never sent the letter.
Brooke rallied enough to direct two more courses on Moby-Dick in fall 2012 and spring 2013 but required extensive assistance from an English professor colleague. He no longer could talk much or lead discussions. Though students treasured his presence, he could make only occasional comments.
In recent months, Brooke couldn’t “hold much of a conversation with us,” Sara Pearson says. “He wasn’t able to be as present.”
Pain comes “in many forms, not just physical,” she says. “His face was etched in pain all the time.”
Dave Mickelsen, a longtime friend, also saw the decline.
“Brooke’s interest in and ability to interact with other people — which had been his hallmark — were contracting,” Mickelsen says. “The horizon of his interests was radically reduced.”
The last class met in the couple’s home July 15.
Brooke then turned to a new goal: dying.
“In the past there had been dramatic moments in which Brooke would say he was in agony,” Mickelsen recalls. “Now there were no histrionics. It was more matter-of-fact, a conscious, reasoned decision.”
But how to do it?
The last day • When Mike Battin walked into the Avenues home on Saturday, July 27, Brooke’s first words were not “hello” or “how are you?” but rather, “I want to terminate my life.”
On Sunday, when Mike’s sister, Sara, arrived, his message was the same.
“I am dying,” Brooke told her. “I want to be free.”
Both children saw their role as listening and being supportive, while helping their mom accept his wishes. The talk was only about how — not whether — this was going to happen.
On Monday, the family went with Brooke to see his primary physician so the doctor could hear for himself Brooke’s decision and mental competence.
The retired professor told him, “I’m alive and I’m dead,” Mike recalls, and the family at first had a tough time deciphering what he meant.
“I think what he was trying to say was that although he was alive,” Mike says, “it was only because of the machines.”
In other words, he would be dead without them.
Peggy wanted to ensure that there wasn’t some kind of physical problem that was prompting his desire to die — an infection, for instance. She asked for more blood tests to rule it out. They all came back clean.
By Tuesday, the doctor recognized and respected Brooke’s resolve — and referred the family to hospice.
The next morning, the family met with a hospice doctor.
“She had the best bedside manner of any physician I have ever met,” says Mike, a former EMT who has dealt with hundreds of doctors. “She told us in her 11 years with hospice, she had never seen anyone so convinced, so resolute as Brooke.”
Together, they worked out a plan for his passing — that very day.
Brooke would receive medication for anxiety and pain. His life-sustaining machines — including a ventilator and a diaphragmatic pacer, which helped regulate his breathing — would be scaled back.
Neither external oxygen nor his feeding tube was in use, and his cardiac pacer did not require turning off.
In the past, when respirators were removed, many patients suffered from air hunger, which left them gasping for breath, the hospice doctor told them. Medications now can block those impulses, but are not the cause of death.
That knowledge gave Brooke the assurance that it would be a gentle way to go.
“We all had the same message — this is a good thing, let it happen,” Mike Battin says. “There was not a wavering moment in any of us.”
Except in Peggy.
Though she agreed intellectually with the decision, she was not ready. She wanted more time.
And, yes, despite her bedrock conviction that a person should have the right to be the architect of his or her own death, it was emotionally devastating.
“You can’t imagine anything more intensely personal, because I love this person,” she had said in 2009, her voice cracking, tears in her eyes at the prospect of his death. “But there are two components to love — love is partly wanting to be with him, but it’s also wanting what’s best for him and wanting to want what he wants. What he wants and needs might be different from my self-interests.”
No one else would feel the loss as deeply as Peggy, the one who had been his companion and lover for decades, the one who had cared for him in his last years of agony and transcendence, the optimist who saw the possibility of more good days ahead.
Now his death was imminent, Peggy knew. Wednesday. Today.
But wait, the hospice workers said they needed an hour. Instead of scheduling his passing to begin at 1:30 p.m., it was pushed back to 3.
How to fill the time?
Brooke called a number of his close friends to say goodbye. He had already written his epitaph, picked out a Salt Lake City Cemetery plot, settled on burial rather than cremation. But he hadn’t selected a headstone. So the almost-gleeful professor in his wheelchair led a tiny band of family, friends and caregivers — in what was dubbed the “Hopkins Liberation March” — a few blocks to the Salt Lake Monument Co., next to the cemetery. They found just the right one and returned to the house in the sweltering July heat, Peggy and Sara stopping for an ice cream cone along the way.
At around 3 p.m., the hospice doctor gave Brooke drugs for anxiety. The end had begun.
“Thank you” were his last words to Mike. To Peggy, “I love you.”
Brooke was getting sleepy, so they moved him to his bed. The necessary machines were slowly turned down. Peggy curled up next to her husband for the last time. A CD of Marion Williams’ “My Soul Looks Back” played quietly as he drifted away.
“It was peaceful and painless,” Peggy says, “just as he wanted it.”
It was, indeed, a least worst death.
Brooke died “of his injuries from the accident, which became an inevitable downhill course,” says Francis, the legal expert and family friend. “Doctors intervened and intervened and intervened to reverse that course, but he eventually reached a point where their interventions were no longer acceptable to him.”
A small army of friends gathered two days later at the cemetery to remember Brooke, to praise him, to place flowers on his casket.
“Brooke showed a lot of dignity, great grace and spirit, and strength under the worst of circumstances,” says his sister, Lisa Hopkins Wheeler, who came from New York City for the occasion. “He expressed all of that in his decision finally to end his life.”
A friend at the service mentioned he once asked Brooke about a set of narrow, wooden skis hanging on the wall. The intrepid English professor said he had used them to ski the Wasatch Mountains’ “Little Matterhorn,” a popular yet arduous backcountry destination.
Brooke wasn’t a great skier, another friend acknowledged, but he was unafraid of plowing down a scary mountain or jumping into the unknown — including death.
And what of Peggy and her views about the end of life?
She still supports a person’s right to choose, she says, but “autonomy is way more complex than you ever could have imagined — and this is true not just for Brooke but for every person who faces the end.”
You can’t assume that “all choices are alike,” she says, “so you have to be alert to what someone deeply wants.”
She believes “in honoring a loved one’s wishes,” she says, her voice dropping, “even if it is painful to you.”
And, she adds, it is.
Facebook: peggy_fletcherstack
Twitter: @religiongal
Memorial service set
A memorial service will be held Aug. 25 at 5 p.m. in Libby Gardner Hall on the University of Utah campus.
Brooke’s ‘final letter’
Dear family, friends, and caregivers,
First, I want to tell you how grateful I am for the love and support you have given me over the past almost four years since my accident in November of 2008. Without that, I would never have survived as long as I have. I’m immensely grateful for this and I hope that I have repaid it in some measure by my own willingness to go on despite considerable odds. I wish I had the words to tell you how much you have meant to me, but I simply don’t.
But now I want to tell you that I’ve decided that I can no longer go on living in a situation that I have been in over the past five months since my pneumonia. A great deal of this has to do with the relentless pain that I have suffered over those months. I have struggled with this, needless to say. On the one hand, I want to keep on fighting and above all to keep on teaching. On the other, I find that I’ve reached the limit of my capacity to go on. It is simply just too hard. Pain eats away at your soul. 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 [my wife] 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. I knew that there would come a time when I would reach that limit. I didn’t know when it would be. But I knew that it would come, and it is here, now. You may think that I’m depressed. I am. And I have every reason to be, I think. But that doesn’t take away from the fact of what I am currently feeling. Despair. And hopelessness.
I don’t mean to come across as self-pitying. I am not. I am simply at the end of the line and what I can tolerate. As I’ve said, relentless pain corrodes the soul. Mine has been corroded to the point at which I simply no longer desire to live in this condition. I do not know how I will go about departing. It’s very complex. I do not have a terminal condition. In fact, because of my diaphragmatic pacer, I could go on living for a very long time (unless of course I come down with another bout of pneumonia, which is probably inevitable anyway). But I do know now that I do not wish to continue to live. Is this selfish on my part? Maybe. If it is, I am deeply sorry. I am especially sorry for what it will do to Peggy, who has done so much to keep me going. To keep me motivated. (Believe me, I am crying as I write this.) I have pulled in many different and contradictory directions. On the one hand, part of me wants to keep on fighting. On the other, I simply wish to give up at this point. As I say, I have no idea how I will arrange for my own departure from the beautiful life I have lived. Peggy and I have had an amazing 35 or so years together. There have been some rough moments as there are in any deep relationship as long as ours. But our life together has been an incredible adventure. Oh, my God, what an adventure. Even after the accident. But the time has come. I think she understands this. I do not wish to bring her any more grief and sadness about my condition. And my state of mind as it has evolved over the past few months. But the time has come.
Forgive me. You have all been so loving and generous. Thank you.
All my love, Brooke
(Dated July 28, 2012, about a year before his death)
More photos, videos, stories
To see more photographs, view videos and read previous stories about Brooke Hopkins’ ordeal, go to

Sunday, August 11, 2013

Memorial service for Brooke

A memorial service for Brooke will be held August 25, 2013, at 5:00 pm, in Libby Gardner Hall on the University of Utah campus.

July 31, 2013, Goodbye, dear Brooke

U. professor Brooke Hopkins dies 4 years after accident
Persevering » Brooke Hopkins battled through pain after a paralyzing 2008 bicycle injury to keep writing, resume teaching.
First Published Jul 31 2013 10:33 pm • Last Updated Aug 01 2013 03:03 pm
Four and a half years after Brooke Hopkins was paralyzed in a bike accident, the well-loved and well-spoken professor passed away quietly Wednesday at his home in the Avenues.
Hopkins, 71, was — as always — surrounded by family and friends.
Hopkins’ energetic style, knowledge of literary allusions, grasp of human emotions and command of language made him immensely popular with students and faculty. During his decades at the university, Hopkins rose to be chairman of the department and was also instrumental in the founding of the school’s writing program. He made friends everywhere he went.
His future wife, Peggy Battin, arrived at the school the same year as Hopkins to teach philosophy, and before long, they were a couple. Eventually, they would marry, and Hopkins helped raise two stepchildren, Sara Battin Pearson and Michael Battin, both currently of Seattle.
When Hopkins retired in 2008, he had plans to write and travel, but the accident in November put an end to all that. It took more than two years for him to regain the ability to breathe on his own enough to return to his home. At home, it required round-the-clock care just to maintain a minimal quality of life — endless medicines, physical therapy, bathing, tubes and machines whirred all around, while Hopkins faced constant pain, infections and setbacks.
The arduous struggle for survival was sometimes unbearable, he told The Salt Lake Tribune in a series of stories about the couple, but it was also "transformative."
Though still paralyzed, Hopkins resumed teaching eager students — mostly retired educators — from an automated wheelchair in his living room. He could no longer pace in front of a blackboard, but his mind and insights into The Iliad, The Odyssey, Chaucer, The Divine Comedy, Moby Dick and Thoreau’s Walden were more astute than ever.
"The real challenge for me has been in trying to expand my mind enough to comprehend my own catastrophe without letting it become that way," Hopkins wrote in December 2012 (with Battin’s help) on a blog they both maintained. "I’ve tried to just let it be part of me, part of who I am becoming, and to always keep in mind how extraordinarily much I’ve gained, not just what I’ve lost."
The pair concluded that final blog entry with these words: "This story doesn’t end, and it doesn’t need to be a tragedy," they wrote together. "It’s still a story of love, even if it’s love under trial."

Monday, July 22, 2013

New York Times Magazine cover article, published July 21, 2013.

July 17, 2013

A Life-or-Death Situation
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.”
He: “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?’’