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.”