New York Times Magazine cover article, published July 21, 2013.
July 17,
2013
A
Life-or-Death Situation
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.”
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?’’
