The Art of Dying Well A Practical: Guide To A Good End of Life First Scribner Trade Paperback Edition
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More Praise for The Art of Dying Well
“In plain English and with plenty of true stories to illustrate her advice, Katy
Butler provides a brilliant map for living well through old age and getting from
the health system what you want and need, while avoiding what you don’t.
Armed with this superb book, you can take back control of how you live before
you die.”
—Diane E. Meier, MD, director,
Center to Advance Palliative Care
“Katy Butler has given us a much-needed GPS for navigating aging and death.
The Art of Dying Well is a warm, wise, and straight-forward guide, hugely
helpful to anyone—everyone—who will go through the complex journey to the
end of life.”
—Ellen Goodman, founder, The
Conversation Project
“I wish every one of my patients would read this book—it is like having a wise
friend explaining exactly what you need to know about coping with aging or
living with a serious illness. It’s not only about dying—it’s about getting what
you need from your medical care, including all the insider stuff your doctors and
nurses don’t always want to say. We can all learn from Katy Butler—especially
doctors—about how to talk to each other more clearly and kindly about
decisions that matter.”
—Anthony Back, MD, Medical
Oncology and Palliative Medicine,
codirector, Cambia Palliative Care
Center of Excellence, University of
Washington
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Contents
INTRODUCTION
The Lost Art of Dying
CHAPTER 1
Resilience
The Wake-Up Call • Building Reserves • Finding Allies in
Preventive Medicine • Weighing Medical Risks • Getting to
Know the Neighbors • Knowing Your Medical Rights • Caring
for the Soul
CHAPTER 2
Slowing Down
When Less Is More • Simplifying Daily Life • Finding Allies in
Slow Medicine, Geriatrics, and a Good HMO • Reviewing
Medications • Reducing Screenings • Making Peace with Loss
CHAPTER 3
Adaptation
A Moment of Truth • Mapping the Future and Making Plans •
Finding Allies in Occupational and Physical Therapy • Disaster-
Proofing Daily Life • Making a Move • Practicing
Interdependence • Being an Example
CHAPTER 4
Awareness of Mortality
The Art of Honest Hope • Talking to Your Doctor •
Understanding the Trajectory of Your Illness • Preparing the
Family • Finding Allies in Palliative Care • Reflecting on What
Gives Your Life Meaning • Staying in Charge • Thinking
Creatively • Redefining Hope
CHAPTER 5
House of Cards
If Only Someone Had Warned Us • Recognizing Frailty •
Avoiding the Hospital • Finding Allies in House Call Programs
• Upgrading Advance Directives • Coping with Dementia •
Shifting to Comfort Care • Enjoying Your Red Velvet Cake
CHAPTER 6
Preparing for a Good Death
Making Good Use of the Time You Have Left • Finding Allies
in Hospice • Next Steps • Settling Your Affairs • Choosing the
Time of Death • Loving, Thanking, and Forgiving • Getting
Help from Your Tribe
CHAPTER 7
Active Dying
The Tree Needs to Come Down • This Is What Dying Looks
Like • Preparing for a Home Death • Preparing in a Nursing
Home • Giving Care • The Final Hours • Humanizing a
Hospital Death • Improvising Rites of Passage • Welcoming
Mystery • Saying Goodbye
CONCLUSION
Toward a New Art of Dying
Acknowledgments
Glossary
Resources
Notes
Permissions
Index
TO BRIAN DONOHUE
anam cara
Author’s Note
This is a work of nonfiction and its stories are based primarily on interviews with
direct participants. There are no composite characters, rejiggered timelines,
made up quotes, or invented scenes. When names have been changed, it is
disclosed in the notes.
I Worried
To our ancestors, death was no secret. They knew what dying looked like. They
knew how to sit at a deathbed. They had customs and books to guide them—
and a great deal of practice.
Consider, for instance, death’s presence in the lives of my great-great-great-
grandparents, Philippa Norman, a household servant, and John Butler, a brush-
and bellows-maker. Poor Quakers, they married in Bristol, England, in 1820 and
had four children, two of whom died before their second birthdays.
In hopes of starting a new life, John sailed to New York in 1827 on the ship
Cosmo; Philippa and their surviving son and daughter followed the next year. In
their rented rooms there, Philippa gave birth to a stillborn son and later sat at
John’s bedside as he died of tuberculosis, now preventable with vaccines and
treatable with antibiotics.
Widowed at thirty-six, Philippa sailed back to Bristol. There she nursed her
beloved daughter Harriet as she, too, died of tuberculosis, in her early twenties.
Only one of Philippa’s five children—her son Philip—would live long enough
to marry and have children of his own. And one of those children, Philip’s
favorite daughter Mary, died in 1869 at the age of thirteen when typhoid fever
swept through her Quaker boarding school.
If you look closely at your own family tree, you will probably discover similar
stories.
People in developed countries now inhabit a changed world, one in which
dying has largely been pushed into the upper reaches of the life span. There it
awaits us, often in shapes our ancestors would not recognize. To have postponed
it so long often means we meet it—as my family did—unprepared.
My father enjoyed a vigorous old age until he was seventy-nine. Then one fall
morning, he came up from his basement study, put on the kettle, had a
devastating stroke, and began a process of slow-motion dying. My mother and I,
who would become his caregivers, had little sense of the terrain ahead, and even
less familiarity with the bewildering subculture of modern medicine.
As I described in my prior book, Knocking on Heaven’s Door: The Path to a
Better Way of Death, we were ignorant of medicine’s limits, and the harm it can
do, when it approaches an aging human being in the same way as it does the
bodies of the young.
Two years later, my father was given a pacemaker to correct his slow
heartbeat. This tiny electronic device made him, as he put it, “live too long” by
forcing his heart to outlive his brain. He spent his last six and a half years
dependent on my exhausted mother, descending step-by-step into deafness,
near-blindness, dementia, and misery. Close to the end, my mother and I
embarked on a modern rite of passage: asking his doctors to deactivate a medical
technology capable of preventing his death without restoring him to a decent
life. His doctors refused.
My father finally died quietly, over the course of five days, in a hospice bed,
with his pacemaker still ticking. My mother and I had quite consciously decided
not to allow his pneumonia (once called “the old man’s friend”) to be treated
with antibiotics. I was fifty-nine then, and had never before sat at a deathbed.
Perhaps it was my great good luck to have been shielded for so long. But it was
also my burden. During my father’s last days, I sat alone for hours in that clean
but generic hospice room, holding his hand, bereft of the “habits of the heart,”
long practiced by my ancestors, that could have made his dying a more bearable
and sacred rite of passage.
We live in a time when advanced medicine wards off death far better than it
helps us prepare for peaceful ones. We feel the loss. Many of us hunger to restore
a sense of ceremony, community, and yes, even beauty, to our final passage. We
want more than pain control and a clean bed. We hope to die well.
TOWARD A NEW ART OF DYING
In the mid-1400s, when the Black Death was still fresh in cultural memory, an
unnamed Catholic monk wrote a medieval death manual called Ars Moriendi,
or The Art of Dying. Written in Latin and illustrated with woodcuts, it taught
the dying, and those who loved them, how to navigate the physical and spiritual
trials of the deathbed. One of the West’s first self-help books, it went through
sixty-five editions before 1500, and it was translated into all the major languages
of Europe.
In each woodcut, a dying man or woman lies in bed, attended by friends,
spouses, angels, and sometimes a doctor, servant, or favorite hound. Beneath the
bed are demons, urging the gravely ill person to give in to one of five
“temptations” standing in the way of dying in peace. Those were lack of faith,
despair, impatience, spiritual pride, and what the monk called “avarice”—not
wanting to say goodbye to the cherished things and people of the world. We no
longer call them “temptations,” but these emotions—fear, remorse, wanting to
die quickly, and not wanting to die at all—are familiar to most who have sat at a
deathbed.
The antidote, counseled the Ars Moriendi, was not to fight bodily death by
medical means, but to care for the soul. The manuals encouraged the dying to
confess their regrets and fears to their friends, and even provided scripts for
attendants to recite, to reassure dying people of God’s forgiveness and mercy.
The dying were then invited to “commend their souls” into the hands of God
and to relax into a state of grace. The soul, pictured in the woodcuts as a tiny
human being, would leave the body and fly to heaven in the company of an army
of angels. Sometimes a roof tile would be loosened to ease its escape.
In the Ars Moriendi, the dying were not passive patients, but the lead actors
in their lives’ final, most important drama. Even on their deathbed, even in pain,
they had choices and moral agency. Their dying was domestic and communal, as
sacred and as familiar as a baptism or a wedding.
Over the next four centuries, emerging religions wrote their own versions of The
Art of Dying. Anglicans consulted The Waye of Dying Well, while Quakers like
my ancestors studied accounts of the stoic deaths of their devout fellows in Piety
Promoted: In Brief Memorials and Dying Expressions of Some of the Society of
Friends, Commonly Called Quakers. That book, repeatedly updated with new
death stories, was still in print in 1828 when my ancestor John Butler died in
New York.
In those days, dying happened at home under the care of family and friends.
It usually took days or weeks—not years. Children, dogs, and even neighbors
would gather at the bedside to say their farewells. Prayers were spoken. A priest
might visit. Candles were lit. When death came, the local church bell would toll,
informing the entire neighborhood.
After the final breath, relatives or volunteers would ceremonially wash and
dress the body, a tradition observed in nearly all cultures and religions. In
Ireland, a wake, a party blending the holy and the worldly, would be held over
the coffin to celebrate and say goodbye to the dead and to help the living make
the transition back toward life.
In America today, church bells no longer toll when someone dies. In
hospitals and nursing homes, the dead are usually zipped into body bags and
gurneyed out back elevators, as if death itself was a frightening and shameful
failure.
The demons under the bed have taken new forms.
Even though more than three-quarters of Americans still hope to die at
home, fewer than a third of us do so; the rest of us die in hospitals, nursing
homes, or other institutions. Nearly a third spend time in an intensive care unit
in the month before they die, and 17 percent of Americans die in an ICU.
In antiseptic rooms, hospital protocols replace ancient rites. The dying often
can’t say their last words, because they’re sunk in chemical twilights or have
tubes down their throats. Relatives pace the halls, drinking bad coffee from
vending machines, often shocked to hear for the first time, in a drab conference
room, that someone they love is so close to dying. Nurses and doctors sometimes
use the word “torture” to describe what happens in the ICU when a member of
the medical team, or of the family, refuses to accept the coming of death.
Treatment doesn’t stop until someone gathers the courage to say “no.”
The modern custom of reducing dying to a medical procedure, and stripping
it of dignity and humanity, is intensifying in most parts of the United States.
Resistance—inside and outside hospitals—is growing in equal measure. Many
people yearn to reclaim the power to shape how they (and those they love) die,
but aren’t sure how to go about it.
This is not what most of us want. A 2017 poll, asking people to think about the
ends of their lives, found that only one-quarter wanted to live as long as possible,
no matter what. The rest cared much more about the quality of their lives and
deaths: not burdening their families, being at peace spiritually, dying at home,
and dying comfortably. If you are among those three-quarters, this book is for
you. It is intended to help you remain your life’s lead actor from the first inklings
of old age or serious diagnosis, all the way to the end. It can be done.
There is a reform movement dedicated to restoring meaning and dignity to
end-of-life care. Outside medicine, it is reflected in the grassroots meetups called
“Death Cafes” and in the success of best-sellers like Atul Gawande’s Being
Mortal, Barbara Ehrenreich’s Natural Causes, and Paul Kalanithi’s When
Breath Becomes Air. Each book, each meeting, each honest conversation is
ripping away the shame and secrecy that has, in the past century, made us more
terrified of death, and more unequipped for it, than we need be. Within the
health care system, this budding movement goes by many names, including
value-based medicine, shared medical decision-making, Slow Medicine, and
patient-centered care. Its pioneers include many brave, emotionally skilled
oncologists and nurses who have never forgotten that their patients’ needs and
desires should come first, and others trained in primary care, geriatrics,
occupational and physical therapy, palliative care, and hospice. All can coach you
in the art of living well long before they help you die well.
Resilience
The Wake-Up Call • Building Reserves • Finding Allies in Preventive
Medicine • Weighing Medical Risks • Getting to Know the Neighbors •
Knowing Your Medical Rights • Caring for the Soul
The River Grows Wider
Some old people are oppressed by the fear of death. . . . The best way to overcome it
is to make your interests gradually wider and more impersonal, until bit by bit the
walls of the ego recede, and your life becomes increasingly merged in the universal
life. An individual human existence should be like a river: small at first, narrowly
contained within its banks, and rushing passionately past rocks and over waterfalls.
Gradually the river grows wider, the banks recede, the waters flow more quietly, and
in the end, without any visible break, they become merged in the sea, and painlessly
lose their individual being. [Those] who can see life in this way will not suffer from
the fear of death, since the things [they care] for will continue.
—BERTRAND RUSSELL
You may find this chapter useful if you recognize yourself in some of the
following statements:
• You easily blew out all the candles on your fiftieth or sixtieth birthday
cake.
• Aches, pains, and health problems are annoying but not limiting. You
pay your own bills, make your own medical decisions, and generally
enjoy life.
• You wonder why they make the numbers on credit cards so small and
fuzzy.
• Your hair is thinning in familiar places and sprouting in strange ones.
• You misplace keys—and names. You’re not crazy about technology
updates.
• A late night blows a hole in the next day. Sometimes you’re in bed by
nine. You’ve discovered naps.
• Getting in shape takes longer, and the results are less impressive. You
injure more easily and recover more slowly.
• Some friends have died. You find obituaries interesting.
• You sometimes sense that your time on earth is limited and precious.
THE WAKE-UP CALL
Doug von Koss was born in the Depression and raised on the banks of the
Mississippi River in a houseboat his father built from salvaged lumber. In the
1960s he settled in San Francisco, where he and his wife, Clydene, raised their
son and daughter. He made his living as a stagehand, theater carpenter, light
board operator, and set dresser for films like George Lucas’s Return of the Jedi.
He’s now eighty-five, tall, elegant, and commanding. Widowed for a decade, he
lived in a neat, rented bungalow on a hilly San Francisco street.
In his fifties, while he was working as prop master for the San Francisco
Opera, he led a workshop in mask making at a men’s conference in the redwoods
of northern California. The men, who’d just met, nervously labored over their
masks in silence, with pinched faces and little joy. The poet Robert Bly, one of
the conference organizers, nudged Doug’s arm and said, “Get them singing.”
Doug drew the men outside. After twenty minutes of belting out camp songs
under the redwoods, the men loosened up, started talking with each other, and
returned to sculpting their masks with abandon. Ever since, Doug has been
flying around the country, helping groups build community by leading them in
traditional songs, chants, and poems that he’s gathered from cultures around the
world.
Not long after his seventy-ninth birthday, Doug found the steps up to his
front door growing steeper by the day. At first, he brushed off his fatigue and
breathlessness as normal aging. Then one midsummer afternoon, as he was
pushing a shopping cart through the supermarket, he felt light-headed, dizzy,
and short of breath. He trundled over to the one place where he could sit down:
the do-it-yourself blood pressure machine near the pharmacy. He doesn’t
remember now whether his reading was too high or too low, only that it wasn’t
good.
The next morning in a medical building downtown, his doctor stopped in
the middle of recording Doug’s electrocardiogram and called an ambulance.
EMTs took Doug down the elevator on a gurney. Twenty-four hours later, in a
cardiac lab at a nearby hospital, doctors inserted a small tubular metal cage called
a stent into an artery leading to the heart’s largest blood vessel. “One of the main
vessels was plugged,” Doug said. “I could have gone belly up.” He’d been
millimeters from a heart attack.
The stent pushed aside a clump of fatty plaque, propped open the artery
walls, and increased the flow of oxygen-rich blood to Doug’s heart, body, and
brain. He found it almost instantly easier to climb his front stairs. “Life became
incredibly sweet,” he remembered. “I could stop and look at a tree, look at a
flower, and really see it. I felt really alive, and at the same time very fragile.”
The stent, he sensed, was a temporary reprieve. Why, he wondered, had fat,
cholesterol, and calcium congealed in his arteries? He didn’t smoke or drink,
never touched bacon, and rode his bike in Golden Gate Park three times a week.
“But I got the message,” he said. “Pay more attention, Doug. There’s a line
between disease and optimum wellness, and you’re sliding into disease.”
His hospital offered a four-month program of intensive cardiac
rehabilitation, paid for by Medicare. Three times a week at a rehab center, he
strapped on a heart monitor and pedaled a stationary bicycle while a physical
therapist helped him gradually increase his heart rate. A dietician nudged him
toward the Mediterranean Diet—less meat, dairy, sugar, and packaged foods;
more vegetables, whole grains, olive oil, fish, and fruit. That, combined with
more strenuous exercise, halved Doug’s risk of having a heart attack or dying
within five years—and more importantly, it substantially extended the years he
will probably spend thriving.
When the cardiac program ended, Doug joined a Y and started running on a
treadmill three times a week. At eighty-two, he began lifting weights. “I looked
around the gym and saw men and women, whom I knew were as old as I was,
walking very vigorously,” he said. “I wanted that, too.” He built muscle and
improved his balance—crucial capacities, given that muscles naturally wither
with age, agility lessens, bones grow brittle, and independence can be devastated
by a fall. “It started a great wellness loop,” Doug said. “More exercise, healthier
eating, better sleep, and an improved sense of well-being.” At a recent checkup,
his doctor said, “Don’t change a thing.”
The health stage I call Resilience, sometimes called “young” or healthy old
age, is a time when you still have the physical capacity to reverse
substantial health problems. Most people in the Resilience stage are in
their fifties, sixties, and early seventies, but some are exceptionally athletic
older people, like Doug von Koss. Length of life is impossible to predict
precisely, but people at this stage usually have at least another decade left
to live.
This is the time to take inventory, build reserves, and assess what needs
shoring up. The major threats to your future well-being will be: physical
weakness, isolation, heart disease, lung disease, diabetes, and dementia.
You can build bulwarks against them—and prolong your time in
Resilience—by exercising, eating better, and widening your circle of
friends and passionate interests. Lifestyle habits—especially smoking,
being sedentary, eating poorly, and drinking too much alcohol—are
responsible for 70 percent of the degenerative diseases that make later life
difficult. Change these habits, even after the age of fifty-five, and you can
cut your health risks as much as sevenfold—a better payoff than almost all
drugs.
I don’t mean to suggest that food asceticism and strenuous exercise will
ward off death and decline forever. They won’t really make you younger
next year, though they may keep you happier, stronger, and more
functional. Given that our bodies age at the cellular level in more than five
thousand specific ways, there’s little point in strengthening physical
muscles without developing the spiritual and social strength to cope with
the inevitable loss of powers, and with death itself. But before you must
accept the things you cannot change, you can seize the time to prepare for
what’s ahead, and to change the things you can.
BUILDING RESERVES
In developed countries, few people die of disease in the first half of life. Most
early deaths result from accidents, violence, drug overdoses, and suicide. In late
midlife, the picture changes. Cancer becomes a major cause of death in the mid-
forties and continues to climb throughout the fifties and sixties. Deaths from
heart disease rise in the sixties and seventies, from lung disease in the eighties,
and from dementia in the nineties. All cause physical suffering long before they
kill, and all are profoundly shaped by how you live.
I suggest you begin by doing what requires the most of you and the least of
medicine. The most effective first step (other than quitting smoking) is to walk
energetically every day. People over sixty-five who do so increase their lung
capacities, get more oxygen to the brain, and expand the size of the
hippocampus, a brain organ crucial to memory. As a side benefit, walking
around malls, Farmers Markets, and to downtown coffee shops amplifies social
connections, another delightful way of improving health, brain function, and
happiness. Most of this is not news. But if you’ve forgotten the deep pleasure
and self-confidence that can follow half an hour or more of aerobic exercise,
especially in nature or with a friend, consider reacquainting yourself. Even late in
the game, getting more active has huge health benefits.
Exercise becomes more challenging as joints grow creaky and minor injuries
heal more slowly. Improvise, adapt, and overcome: get moving in any way that
makes you break a sweat and gives you joy. Many people find delight in ballroom
dancing, biking, or swimming; others find it easier to get started—and to keep
going—by scheduling a regular exercise date with a friend. If your feet or knees
hurt, consider upgrading shoes or improving your posture or gait with the help
of a podiatrist, a physical therapist, or a practitioner of an alternative approach,
like Feldenkrais or the Alexander Technique. Stay flexible and be willing to
substitute a new activity whenever one falls by the wayside: if you can’t run
anymore, try water aerobics; if you lose your partner, explore group activities like
Greek or country line dancing. No matter what happens, keep going.
The body’s capacity to heal, even at this relatively late date, is astounding. Tom
Murphy, a former Associated Press journalist who’d once run a marathon, was
sixty-two when he was diagnosed with diabetes. He’d been working a stressful
and unsatisfying job and, he said, had “fallen into my mom’s habit of eating
mostly cookies and ice cream, frozen pizzas, Danishes, and lots of bread.”
He took a new job and moved from the San Francisco suburbs to rural
Mendocino county. By the time he met his new primary care doctor, he weighed
225 pounds and had a trifecta of late-life warning flags: high cholesterol, high
blood pressure, and high blood sugar. His alarmed physician recommended he
see a cardiologist immediately and start taking a cholesterol-lowering statin, a
blood pressure–reducing diuretic, and the blood sugar–lowering drug
metformin.
Tom looked at his friends and family, many of whom were already on these
drugs, and saw his own future. “I have a friend who went blind from diabetes,
another who can’t walk, and a third who died of a heart attack,” he said. “All
could have changed their diets in their fifties, but waited too long. I wasn’t going
to make the same mistake.”
He took blood pressure medication to lower his stroke risk, but asked for a
grace period before adding other medications. What followed was, he said, “a
very emotional three months. Changing how I lived and ate became more
important than work, friends, reading, even my marriage.” He jogged a mile and
a quarter every morning, starting at a snail’s pace and gradually increasing his
speed and distance. He stopped eating all foods with added sugar, and other
“things that had made my life ‘richer.’ ”
He struggled to change his sleep patterns. He experienced the highs of
exercise and the lows of accompanying muscle pain. He wrestled with the drug-
like withdrawal effects of quitting sugar, and, as he put it, “the stress of facing
multiple life-threatening diseases.” To keep going he kept a diary of what he ate
and when he exercised, and turned for support to his wife and to a friend who
successfully managed her Type 1 diabetes without medication.
Three months later, his cholesterol level was normal for the first time in his
life, and so was his blood pressure. His blood sugar levels have fallen more than a
third and are now just a hair above normal. His diet is based on fresh vegetables
from his wife’s garden and smaller amounts of lean turkey, cheese, brown rice,
whole wheat bread, and sugar-free jam. Every day he jogs two miles and rides his
bike. He weighs 170 pounds and takes no medications. “Yes, it was hard,” he
said. “It’s still hard. But my doctor is very happy and I’m never going back.”