by Katy Butler
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
About the Author
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
I worried a lot. Will the garden grow, will the rivers
flow in the right direction, will the earth turn
as it was taught, and if not how shall
I correct it?
Was I right, was I wrong, will I be forgiven,
can I do better?
Will I ever be able to sing, even the sparrows
can do it and I am, well,
hopeless.
Is my eyesight fading or am I just imagining it,
am I going to get rheumatism,
lockjaw, dementia?
Finally I saw that worrying had come to nothing.
And gave it up. And took my old body
and went out into the morning,
and sang.
—MARY OLIVER
—INTRODUCTION—
The Lost Art of Dying
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 mothe
r, 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.
* * *
There is a way to a peaceful, empowered, humane death, even in an era of high-technology medicine. It begins long before the final panicked trip to the emergency room. It requires navigating—over years, not days—a medical system poorly structured to meet the needs of aging people, and of people of any age coping with a prolonged or incurable illness.
That system pours its money, energy, and time into saving lives, curing the curable, and fixing the fixable. In its division of labor, it looks much like an auto assembly line. Each specialist works on a single vital organ and puts the body back on the conveyor belt. Every year, this “fast medicine” track saves countless victims of violence, car accidents, and heart attacks. In a crisis, it works very well.
But when people confront an incurable condition that can be managed, but not fixed, the conveyor belt offers more and more procedures that pose greater and greater risks. The body becomes globally fragile. Now, fixing things organ by organ, and assuming that living as long as possible is every person’s paramount goal, can create obstacles to living well despite imperfect health, and to dying in peace.
Prolonging the life of the body is only one of medicine’s traditional missions. The others are: preventing disease; restoring and preserving function; relieving suffering; and attending the dying. As we age, these “quality of life” goals grow in importance. But conveyor belt medicine, which absorbs the bulk of our insurance dollars, has largely forgotten how to address them. It rewards cure far better than care. It often does things to people, not for them, and turns them into passive bystanders to their own health. It shuttles the sick and fragile from specialist to specialist, and from doctor’s office to emergency room and back again. The older or frailer we get, the wider the gap is likely to grow between the treatments fast medicine offers and the thoughtful, time-consuming gentle, coordinated care we need most.
In the years I’ve spent listening to hundreds of people’s stories of good and difficult declines and deaths, I’ve learned one thing: people who are willing to contemplate their aging, vulnerability, and mortality often live better lives in old age and illness, and experience better deaths, than those who don’t.
They keep shaping lives of comfort, joy, and meaning, even as their bodies decline. They get clear-eyed about the tr
ajectory of their illnesses, so they can plan. They regard their doctors as their consultants, not their bosses. They seek out medical allies who help them thrive, even in the face of disappointment and adversity, and they prepare for a good death. They enroll in hospice earlier, and often feel and function better—and sometimes even live longer—than those who pursue maximum treatment. They make peace with the coming of death, and seize the time to forgive, to apologize, and to thank those they love. They rethink the meaning of “hope.” And they often die with less physical suffering, and just as much attention to the sacred, as our ancestors did.
But those who give up their power, hoping only to postpone death and never facing where things are heading, often ride the conveyor belt to its ultimate destination: a high-tech hospital room. And there, in a place where success is defined as not dying, they die.
* * *
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.