This bestselling memoir—hailed a “triumph” by The New York Times—ponders the “Good Death” and the forces within medicine that stand in its way.
Award-winning journalist Katy Butler was living thousands of miles from her aging parents when the call came: her beloved seventy-nine-year-old father had suffered a crippling stroke. Katy and her mother joined the more than 28 million Americans who are shepherding loved ones through their final declines.
Doctors outfitted her father with a pacemaker, which kept his heart going while doing nothing to prevent a slide into dementia, near-blindness, and misery. When he said, “I’m living too long,” mother and daughter faced wrenching moral questions. Where is the line between saving a life and prolonging a dying? When do you say to a doctor, “Let my loved one go?”
When doctors refused to disable the pacemaker, condemning her father to a lingering death, Butler set out to understand why. Her quest had barely begun when her mother, faced with her own grave illness, rebelled against her doctors, refused open-heart surgery, and met death the old-fashioned way: head-on.
Part memoir, part medical history, and part spiritual guide, Knocking on Heaven’s Door is a map through the labyrinth of a broken medical system. Technological medicine, obsessed with maximum longevity, is creating more suffering than it prevents. Butler chronicles the rise of Slow Medicine, a movement bent on reclaiming the “Good Deaths” our ancestors prized. In families, hospitals, and the public sphere, this visionary memoir is inspiring the difficult conversations we must have to light the path to a better way of death.
“A lyrical meditation written with extraordinary beauty and sensitivity” (San Francisco Chronicle).
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About the Author
Read an Excerpt
Knocking on Heaven’s Door
On an autumn day in 2007, while I was visiting from California, my mother made a request I both dreaded and longed to fulfill. She’d just poured me a cup of tea from her Japanese teapot shaped like a little pumpkin; beyond the kitchen window, two cardinals splashed in her birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. She put a hand on my arm. “Please help me get your father’s pacemaker turned off,” she said. I met her eyes, and my heart knocked.
Directly above us, in what was once my parents’ shared bedroom, my eighty-five-year-old father, Jeffrey—a retired Wesleyan University professor, stroke-shattered, going blind, and suffering from dementia—lay sleeping. Sewn into a hump of skin and muscle below his right collarbone was the pacemaker that had helped his heart outlive his brain. As small and shiny as a pocket watch, it had kept his heart beating rhythmically for five years. It blocked one path to a natural death.
After tea, I knew, my mother would help my father up from his narrow bed with its mattress encased in waterproof plastic. After taking him to the toilet, she’d change his diaper and lead him tottering to the living room, where he’d pretend to read a book of short stories by Joyce Carol Oates until the book fell into his lap and he stared out the sliding glass window.
I don’t like describing what the thousand shocks of late old age were doing to my father—and indirectly to my mother—without telling you first that my parents loved each other and I loved them. That my mother could stain a deck, sew a silk blouse from a photo in Vogue, and make coq au vin with her own chicken stock. That her photographs of Wesleyan authors had been published on book jackets, and her paintings of South African fish in an ichthyologists’ handbook. That she thought of my father as her best friend.
And that my father never gave up easily on anything.
Born in South Africa’s Great Karoo Desert, he was a twenty-one-year-old soldier in the South African Army when he lost his left arm to a German shell in the Italian hills outside Siena. He went on to marry my mother, earn a PhD from Oxford, coach rugby, build floor-to-ceiling bookcases for our living room, and with my two younger brothers as crew, sail his beloved Rhodes 19 on Long Island Sound. When I was a teenager and often at odds with him, he would sometimes wake me chortling lines from The Rubaiyat of Omar Khayyam in a high falsetto: “Awake, my little one! Before life’s liquor in its cup be dry!” On weekend afternoons, he would put a record on the stereo and strut around the living room conducting invisible orchestras. At night he would stand in our bedroom doorways and say good night to my two brothers and me quoting Horatio’s farewell to the dying Hamlet: “May flights of angels sing thee to thy rest!”
Four decades later, in the house where he once chortled and strutted and sometimes thundered, I had to coach him to take off his slippers before he tried to put on his shoes.
My mother put down her teacup. She was eighty-three, as lucid and bright as a sword point, and more elegant in her black jeans and thin cashmere sweater than I could ever hope to be. She put her hand, hard, on my arm. “He is killing me,” she said. “He. Is. Ruining. My. Life.” Then she crossed her ankles and put her head between her knees, a remedy for near-fainting that she’d clipped from a newspaper column and pinned to the bulletin board behind her. She was taking care of my father for about a hundred hours a week.
I looked at her and thought of Anton Chekhov, the writer and physician who died of tuberculosis in 1904 when he was only forty-four. “Whenever there is someone in a family who has long been ill, and hopelessly ill,” he wrote, “there come painful moments when all, timidly, secretly, at the bottom of their hearts long for his death.” A century afterward, my mother and I had come to long for the machine in my father’s heart to fail.
* * *
How we got there is a long story, but here are a few of the bones. On November 13, 2001, when my father was seventy-nine and apparently vigorous, he suffered a devastating stroke. A year later—gravely disabled yet clear-minded enough to know it—he was outfitted with a pacemaker in a moment of hurry and hope. The device kept his heart going while doing nothing to prevent his slide into dementia, incontinence, near-muteness, misery, and helplessness. The burden of his care crushed my mother. In January 2007, when my father no longer understood the purpose of a dinner napkin, I learned that his pacemaker could be turned off painlessly and without surgery, thus opening a door to a relatively peaceful death. It was a death I both feared and desired, as I sat at the kitchen table while my mother raised her head from her knees.
Her words thrummed inside me: Please help me get your father’s pacemaker turned off. I’d been hoping for months to hear her say something like this, but now that she’d spoken, I was the one with doubts. This was a moral choice for which neither the Anglicanism of my English childhood nor my adopted Buddhism had prepared me. I shook when I imagined watching someone disable his pacemaker—and shook even more when I contemplated trying to explain it to him.
At the same time, I feared that if I did nothing, his doctors would continue to prolong what was left of my father’s life until my mother went down with him. My fear was not unfounded: in the 1980s, while working as a reporter for the San Francisco Chronicle, I spent six weeks in the intensive care unit of San Francisco General Hospital, watching the erasure of the once-bright line between saving a life and prolonging a dying. I’d never forgotten what I saw.
If my father got pneumonia, once called “the old man’s friend” for its promise of an easy death, a doctor might well feel duty-bound to prescribe antibiotics. If he collapsed and my mother called 911, paramedics would do everything they could to revive him as they rushed his gurney toward the emergency room.
With just a little more bad luck, my father might be wheeled into an intensive care unit, where my mother and I—and even my dying father—would become bystanders in a battle, fought over the territory of his body, between the ancient reality of death and the technological imperatives of modern medicine. It was not how we wanted him to die, but our wishes might not mean much. Three-quarters of Americans want to die at home, as their ancestors did, but only a quarter of the elderly currently do. Two-fifths of deaths now take place in a hospital, an institution where only the destitute and the homeless died before the dawn of the twentieth century. Most of us say we don’t want to die “plugged into machines,” but a fifth of American deaths now take place in intensive care, where ten days of futile flailing can cost as much as $323,000. If my mother and I did not veer from the pathway my father was traveling, he might well draw his last breath in a room stripped of any reminder of home or of the sacred, among doctors and nurses who knew his blood counts and oxygen levels but barely knew his name.
Then again, the hospital might save his life and return him home to suffer yet another final illness. And that I feared almost as much.
I loved my father, even as he was: miserable, damaged, and nearly incommunicado. I loved my mother and wanted her to have at least a chance at a happy widowhood. I felt like my father’s executioner, and that I had no choice.
I met my mother’s eyes and said yes.
* * *
I did not know the road we would travel, only that I’d made a vow. In the six months that followed, I would learn much about the implications of that vow, about the workings of pacemakers and of human hearts, about law and medicine and guilt, about money and morality. I would take on roles I never imagined could be played by a loving daughter. I would watch my father die laboriously with his pacemaker still ticking. After his death, I would not rest until I understood better why the most advanced medical care on earth, which saved my father’s life at least once when he was a young man, succeeded at the end mainly in prolonging his suffering.
Researching a magazine article and then this book, I would discover something about the perverse economic incentives within medicine—and the ignorance, fear, and hope within our own family—that promoted maximum treatment. I would contemplate the unintended consequences of medical technology’s frighteningly successful war on natural death and its banishment of the “Good Death” our ancestors so prized. Armed with that bitter wisdom, I would support my mother when she reclaimed her moral authority, defied her doctors, refused a potentially life-extending surgery, and faced her own death the old-fashioned way: head-on.
* * *
My mother and I often felt like outliers, but I know now that we were not alone. Thanks to a panoply of relatively recent medical advances ranging from antibiotics and vaccines to dialysis, 911 systems, and airport defibrillators, elderly people now survive repeated health crises that once killed them. The “oldest old” are the nation’s most rapidly growing age group. But death is wily. Barred from bursting in like an armed man, it wages a war of attrition. Eyesight dims, joints stiffen, heartbeats slow, veins clog, lungs and bowels give out, muscles wither, kidneys weaken, brains shrink. Half of Americans eighty-five or over need help with at least one practical, life-sustaining activity, such as getting dressed or eating breakfast. Nearly a third have some form of dementia, and more develop it with each year of added longevity. The burden of helping them falls heavily on elderly wives and middle-aged daughters, with the remainder provided by sons and husbands, hired caregivers, assisted living complexes, and nursing homes.
Every day across the country, family caregivers find themselves pondering a medical procedure that may save the life—or prevent the dying—of someone beloved and grown frail. When is it time to say “No” to a doctor? To say, “Enough”? The questions surface uneasily in medical journals and chat rooms, in waiting rooms, and in conversations between friends. However comfortingly the questions are phrased, there is no denying that the answers, given or avoided, will shape when and how someone we love meets death. This is a burden not often carried by earlier generations of spouses, sons, and daughters. We are in a labyrinth without a map.
Before I shepherded my parents through to their deaths, I thought that medical overtreatment was mainly an economic problem: a quarter of Medicare’s roughly $560 billion in annual outlays covers medical care in the last year of life. After my father’s death, I understood the human costs. After my mother’s death, I saw that there could be another path.
In our family’s case, the first crucial fork in the road appeared six and a half years before my father died, in the fall of 2001. It began with a family crisis, an invitation to a distant daughter to open her heart, and a seemingly minor medical decision: the proposed installation of a pacemaker in the aftermath of a catastrophic stroke.
Table of Contents
Part I The Stroke 23
Chapter 1 Along Came a Blackbird 25
Chapter 2 A Year of Grace 50
Chapter 3 Rites of Passage 77
Part II Fast Medicine 89
Chapter 4 The Tyranny of Hope 91
Chapter 5 Inventing Lifesaving and Transforming Death 109
Chapter 6 My Father's Open Heart 143
Part III Ordeal 161
Chapter 7 Not Getting Better 163
Chapter 8 Dharma Sisters 171
Chapter 9 Broke-down Palace 209
Chapter 10 White Water 230
Part IV Rebellion 243
Chapter 11 The Sorcerer's Apprentice 245
Chapter 12 The Business of Lifesaving 260
Chapter 13 Deactivation 285
Part V Acceptance 325
Chapter 14 The Art of Dying 327
Chapter 15 Afterward 347
Part VI Grace 363
Chapter 16 Valerie Makes Up Her Mind 365
Chapter 17 Old Plum Tree Bent and Gnarled 377
Part VII Into the Light 399
Chapter 18 A Better Way of Death 401
Chapter 19 A Map through the Labyrinth 424
Chapter 20 Notes for a New Art of Dying 428
Author's Note 505
Permissions and Credits 515
What People are Saying About This
“Katy Butler’s science background and her gift for metaphor make her a wonderfully engaging storyteller, even as she depicts one of our saddest but most common experiences: that of a slow death in an American hospital. Knocking on Heaven’s Door is a terrible, beautiful book that offers the information we need to navigate the complicated world of procedure and technology-driven health care. I’m recommending it to all my friends with aging parents or partners, and holding on to a copy for myself.”
“Knocking On Heaven’s Door is a disquieting book, and an urgent one. Against a confounding bioethical landscape, Katy Butler traces the odyssey of her parents’ final years with honesty and compassion. She does a great service here, skillfully illuminating issues most of us are destined to face sooner or later. I cannot imagine a finer way to honor the memory of one’s parents than in such a beautifully rendered account.”
"This is the most important book you and I can read. It is not just about dying, it is about life, our political and medical system, and how to face and address the profound ethical and personal issues that we encounter as we care for those facing dying and death. You will not be able to put this book down. Its tenderness, beauty, and heart-breaking honesty matches the stunning data on dying in the West. A splendid and compassionate endeavor.
"Katy Butler's new book—brave, frank, poignant, and loving—will encourage the conversation we, as a society, desperately need to have about better ways of dying. From her own closely-examined personal experience, she fearlessly poses the difficult questions that sooner or later will face us all.”
“Intimate and wise, heartbreakingly compassionate, and critically helpful, this is a truly important work that I hope will be widely read. We have lost our way and Katy Butler’s impeccably researched and powerful tale will help eliminate much suffering on the passage to the mystery of death.”
“This is some of the most important material I have read in years, and so beautifully written. It is riveting, and even with parents long gone, I found it very hard to put down. Katy Butler's book will challenge and nourish you. I am deeply grateful for its truth, wisdom, and gorgeous stories—some heartbreaking, some life-giving, some both at the same time. Butler is an amazing and generous writer. This book will change you, and, I hope, our society.”
"This beautifully written and well researched book will take you deep into the unexplored heart of aging and medical care in America today. With courage, unrelenting honesty, and deepest compassion, Katy Butler shares her saga of how a family of independent, thoughtful, and complex souls attempt to navigate their uncharted journey through medical institutions and specialties. Here, the degree of individual and family suffering turns on myriad decisions, large and small, coerced by economic and institutional forces. Knocking on Heaven’s Door makes it clear that until care of the soul, families, and communities become central to our medical approaches, true quality of care for elders will not be achieved.
Reading Group Guide
This reading group guide for Knocking on Heaven’s Door includes questions to enhance your discussion of the book as literature, as well as suggestions that may help you open difficult conversations with friends and relatives who are near the end of life.
Topics & Questions for Discussion
1. Where do you draw the line between saving a life and prolonging a dying? Has your family included a member who “lived too long”? Do you think it is okay to “let nature take its course”? How do you distinguish that from suicide?
2. How did you feel about Valerie Butler’s choice? Was it brave, or not? Do you think it caused her children more or less suffering than her husband’s death? What were the blessings and drawbacks of her unexpectedly rapid death? What were the advantages and disadvantages of her husband’s protracted death, from the point of view of his survivors?
3. Butler writes, “I don’t like describing what the thousand shocks of late old age were doing to my father—and indirectly to my mother—without telling you first that my parents loved each other and I loved them” (p. 2). In this passage she drops her journalistic point of view and turns directly to the reader, using the word “love.” Discuss Butler’s relationship to each of her parents and their relationship with each other. How does each change throughout her father, Jeff’s, illness? Is there redemption? Reconciliation?
4. Dr. Sherwin B. Nuland said of Knocking on Heaven’s Door, “Katy Butler’s astute intellect has probed deeply and seen into the many troubling aspects of our nation’s inability to deal with the reality of dying in the twenty-first century. . . . This elegiac volume is required reading for every American adult; it has about it a sense of the universal.” What do you think makes Knocking on Heaven’s Door feel universal? What aspects of the “reality of dying in the twenty-first century” surprised you?
5. When Katy’s mother, Valerie, asks for Katy’s help getting Jeff’s pacemaker turned off, Katy says, “I felt like my father’s executioner, and that I had no choice” (p. 5). How do you explain this sentiment? Why does Katy agree to help her mother? What resistance do they run into when trying to get his pacemaker turned off?
6. What is palliative care, and how does it differ from hospice care? When Jeff is able to get into a palliative care program, what is the effect on the Butler family?
7. Jeffrey Butler’s “stroke devastated two lives” (p. 31). How? What are the burdens that are placed on Valerie as caregiver? Valerie attends a caregiver support group only once, saying that she cannot spare the time. Do you think that’s the real reason that she decides not to return?
8. If Jeff had lived before the pacemaker existed, Butler notes that “nobody would have called his heart diseased—just worn out” (p. 57). How did the invention of the pacemaker affect modern medicine? How else did medicine change following World War II?
9. When Katy visits her father in the hospital following his stroke, she recounts watching an orderly shave him, saying “he paid close attention to what he was doing and invested the moment, the room, with a presence I can only call sacred” (p. 21). Why is this moment so profound for Katy? Why do you think the orderly’s actions teach her how to love her “helpless, broken, and infinitely slowly dying father” (p. 21)?
10. What were your initial impressions of Valerie? What did you think of her decision to refuse treatment when facing her own illness? How did your view of Valerie change during the course of the book? Did she show courage when she refused open-heart surgery? Should we redefine courage at the end of life to mean allowing a peaceful passing rather than fighting an endless battle against cancer, for example?
11. How did Valerie’s relationship with her daughter evolve? Do you think this constitutes “redemption,” despite the partial nature of their reconciliation? Katy frames this as a common intergenerational conflict; is it true to your own life?
12. In Knocking on Heaven’s Door, Katy Butler describes the “Slow Medicine” movement. What is it? Discuss the ways that Slow Medicine differs from “Fast Medicine.” Why do you think Slow Medicine has gained in popularity? 13. Does technological medicine’s aim for maximum longevity have some benefits? For example, do you have relatives who have benefitted from late-life surgeries? What has been your family’s experience, good and bad?
14. Of her actions during Jeff’s illness, Butler says, “maybe the best thing I did was write my father love letters” (p. 93). One of the themes of the book is the balance between trying to “fix” things and accepting the unfixable with love and grace. Katy spends a lot of time trying to fix things for her parents. Do you think she comes to any self-awareness about the limits of fixing or the value of unconditional love?
15. Butler writes, “Love can look heartless” (p. 211). What decisions do she and Valerie make regarding Jeff’s end-of-life care that could be construed as “heartless” to someone on the outside? Why do they make those decisions? Katy says, “I wanted him to die because I loved him” (p. 195). What do you make of this?
Enhance Your Book Club
1. Butler chose to include Makeda, Queen of Sheba, translated by Jane Hirshfield, as an epigraph in Knocking on Heaven’s Door. Discuss the poem as it relates to your life. Was there a time that you “dived into the great sea” and came up with a pearl of wisdom? Was it worth the pain?
2. To learn more about Katy Butler, read reviews of Knocking on Heaven’s Door, and find out when she’ll be appearing in a city near you; or, to arrange a speaking engagement, visit her official website at KatyButler.com.
3. Valerie and Katy made the difficult decision to turn off Jeff’s pacemaker. Was there a time you went with your gut when experts were telling you otherwise? How did you know you were doing the right thing? Or did you only know later? Share your story with your book club if you feel comfortable doing so.
4. Can or should we redefine the meaning of hope at the end of life? When hope of extending life (with good quality) is no longer wise, are there other sorts of honest, meaningful hopes for friends and relatives? What kinds of family healing have you seen when it was known that death was imminent or wished for?
Guide to Further Discussion
In Knocking on Heaven’s Door, Katy Butler writes that now, more than ever, we are confronted with questions whose answers “will shape when and how someone we love meets death. . . . We are in a labyrinth without a map” (p. 7). The questions posed below are designed to help you find your way through the labyrinth of modern health care. These are not easy conversations to have, but getting some answers will give you a clearer mind and heart for facing the hardest decisions you will ever have to make.
How to Talk to Doctors
How can you empower your doctor to have an honest conversation with you rather than avoiding the issue, giving treatments that won’t work, or offering dishonest hope?
• Butler cites Francesco Fiorista, a practitioner of Slow Medicine, as saying “To do more is not necessarily to do better” (p. 59). Keep this statement in mind when speaking to doctors about the proposed course of treatment for your friend or relative. Ask about the pros and cons and any alternatives to suggested treatments and tests.
• Before agreeing to a test, ask: Will the results change future treatment? Is this appointment necessary?
• What about doing nothing? It is often taken as a given that one’s decision is not of how but when to treat. Ask first whether treatment is necessary. What are the goals of the treatment? How will the quality of the patient’s life be affected? Can you watch and wait? Provide comfort care only?
• Ask: What is the typical trajectory of the diagnosis? What can you expect next? Is palliative care an option? Can your friend die at home?
• On page 277, Katy lists the stages of the last chapter of life: fragility, decline, disability, failing health, and active dying. Ask your doctor where your friend or relative is on this path. Have they reached the point where they are likely to return from each hospital stay worse rather than better?
• Before agreeing to surgery, ask about:
1. Recovery time, and whether home assistance or rehab will be required.
2. Risks to cognitive functioning. Get a cognitive assessment before any open-heart surgery or general anesthesia.
3. Level of function after recovery.
How to Talk to Nurses and Other Non-Doctors
“Some of the most important and least glamorous help” Butler’s family got was in “odd-shaped . . . unpaid interstices within the health care system” (p. 38).
• Ask the hospital staff what resources are available to you as a caregiver and to your friend or relative as a patient. These resources might include social workers, patient advocates, a palliative care team, a bioethics consultant, or the hospital chaplain.
• Nurses often see things that doctors don’t because they spend more time with patients each day. Ask their advice. What do they think is going on? Is death near?
How to Talk to Your Family
“You may not be able to fix your parents’ suffering or make them whole, but you can heal your relationships and help prepare everyone for death” (p. 276).
• Butler’s brother tells her “I’ve seen it over and over. . . . Everyone jumps on an airplane, they go to the emergency room, and they stand there together. . . . They do it out of guilt, they become a burden, and they accomplish nothing” (p. 16). Schedule a phone conference. List duties and delegate them. Hands-on caregivers are the decision makers. If you live far apart, how can you offer support from a distance?
• Are you aware of your relative’s final wishes? Speak with each other about those wishes, to ensure that all are of the same understanding. Are you able to execute those wishes?
• In On Death and Dying, Elizabeth Kübler-Ross writes that “the family’s needs will change from the onset of the illness and continue in many forms until long after the death has occurred” (On Death and Dying, p. 167). What are your needs at the present moment? Do you have concerns that you can share with each other?
How to Talk to the Person Who Is Dying
• Ask: Have you chosen someone to make medical decisions when you can’t? Do you feel that person has a clear understanding of what you want?
• Butler writes, “The work of death does not start on the day that someone says to you, ‘Your mother is dying.’ No one may ever say this. There may always be another treatment” (p. 276). To this end, it is important to have conversations about the person’s wishes as early as possible. Ask your friend: Do you want to die? What makes life worth living for you? Would you rather die than live in a nursing home?
• Is your loved one ready to have a conversation about their vision of a Good Death? What kind of measures do they want taken on their behalf? And how do they wish to be commemorated?
• In her final days, Valerie Butler asks for time alone with one of her sons. Your friend may want to do the same. Ask how and with whom they want to have visits.
Suggestions for Further Reading
Note: This is a partial list. Please see the Resources section beginning on page 286 of Knocking on Heaven’s Door for additional literature and information.
The End of Your Life Book Club, Will Schwalbe
The Etiquette of Illness: What to Say When You Can't Find the Words, Susan P. Halpern
My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones, Dennis McCullough, MD
On Death and Dying, Elisabeth Kübler-Ross, MD
When Someone Dies: The Practical Guide to the Logistics of Death, Scott Taylor Smith with Michael Castleman
Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness, Hank Dunn
For more tips on how to start a conversation about last-chapter-of-life medical choices, visit TheConversationProject.org and Deathwise.org.