Knocking on Heaven's Door: The Path to a Better Way of Death

Knocking on Heaven's Door: The Path to a Better Way of Death

4.8 22
by Katy Butler
     
 

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An exquisitely written, expertly reported memoir and exposé of modern medicine that leads the way to more humane, less invasive end-of-life care—based on the author’s acclaimed New York Times Magazine piece.

This is the story of one daughter’s struggle to allow her parents the peaceful, natural deaths they

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Overview

An exquisitely written, expertly reported memoir and exposé of modern medicine that leads the way to more humane, less invasive end-of-life care—based on the author’s acclaimed New York Times Magazine piece.

This is the story of one daughter’s struggle to allow her parents the peaceful, natural deaths they wanted—and to investigate the larger forces in medicine and the human heart that stood in the way.

When doctors refused to disable the pacemaker that caused her eighty-four-year-old father’s heart to outlive his brain, Katy Butler, an award-winning science writer, embarked on a quest to understand why modern medicine was depriving him of a humane, timely death. After his lingering death, Katy’s mother, nearly broken by years of nonstop caregiving, defied her doctors, refused open-heart surgery, and insisted on facing death the old-fashioned way: bravely, lucidly, and head on.

Against this backdrop of familial love, wrenching moral choices, and redemption, Knocking on Heaven’s Door celebrates the inventors of the 1950s who cobbled together lifesaving machines like the pacemaker—and it exposes the tangled marriage of technology, medicine, and commerce that gave us a modern way of death: more painful, expensive, and prolonged than ever before.

Caring for declining parents is a reality facing millions who may someday tell a doctor: “Let my parent go.” A riveting exploration of the forgotten art of dying, Knocking on Heaven’s Door empowers readers to create new rites of passage to the “Good Deaths” our ancestors so prized. Like Mitford’s The American Way of Death and How We Die by Sherwin Nuland, it is sure to cause controversy and open minds.

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Editorial Reviews

The New York Times Book Review - Abraham Verghese
Knocking on Heaven's Door is a thoroughly researched and compelling mix of personal narrative and hard-nosed reporting that captures just how flawed care at the end of life has become. My hope is that this book might goad the public into pressuring their elected representatives to further transform health care from its present crisis-driven, reimbursement-driven model to one that truly cares for the patient and the family.
Publishers Weekly
In this eloquent exegesis on taking control of the end of one’s life, Butler defines a “good death” as one that is free from unnecessary medical intervention and faced with acceptance and dignity. The book is an expansion of her groundbreaking New York Times Magazine article, published in June 2010. A journalist living in Northern California, Butler helped her aging parents, who lived in Middletown, Conn., through several serious health issues (both parents have since died). She writes affectingly of her parents’ wishes to make moral decisions about their deaths—in spite of the medical establishment’s single-minded efforts to prolong their lives, regardless of the quality of those lives. Butler’s father had a pacemaker installed in 2003 after an earlier stroke, allowing his heart to continue functioning indefinitely even as his overall health deteriorated. The brunt of his care fell on Butler’s prickly, authoritarian mother—to the anguish of Butler, who eventually became her father’s caregiver, despite living 3,000 miles away and having two able-bodied younger brothers. Butler usefully weighs the benefits of life-prolonging medical care, and argues persuasively for helping elders face death with foresight and bravery. Agent: Amanda Urban, ICM. (Sept.)
From the Publisher
“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.”

"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 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."

“This is a book so honest, so insightful and so achingly beautiful that its poetic essence transcends even the anguished story that it tells. Katy Butler’s perceptive 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 21st century: emotional, spiritual, medical, financial, social, historical and even political. And yet, though such valuable insights are presented with a journalist’s clear eye, they are so skillfully woven into the narrative of her beloved parents’ deaths that every sentence seems to come from the very wellspring of the human spirit that is in her. This elegiac volume is required reading for every American adult; it has about it a sense of the universal.”

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 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."

“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.”

Mother Jones
"[An] unflinching look at America's tendency to overtreat [that] makes a strong case for the 'slow medicine' movement, which recognizes that 'dying can be postponed, but aging cannot be cured.'"
Spirituality and Health Magazine
"Shimmer[s] with grace, lucid intelligence, and solace."
author of A Path with Heart - Jack Kornfield
“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.”
Doctor - Sherwin B. Nuland
“This is a book so honest, so insightful and so achingly beautiful that its poetic essence transcends even the anguished story that it tells. Katy Butler’s perceptive 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 21st century: emotional, spiritual, medical, financial, social, historical and even political. And yet, though such valuable insights are presented with a journalist’s clear eye, they are so skillfully woven into the narrative of her beloved parents’ deaths that every sentence seems to come from the very wellspring of the human spirit that is in her. This elegiac volume is required reading for every American adult; it has about it a sense of the universal.”
BookPage
"Butler argues persuasively for a major cultural shift in how we understand death and dying, medicine and healing. At the same time, she lays her heart bare, making this much more than ideological diatribe. Readers…should be sure to pick up this book. It is one we will be talking about for years to come.”
Minneapolis Star Tribune
"[A] deeply felt book...[Butler] is both thoughtful and passionate about the hard questions she raises — questions that most of us will at some point have to consider. Given our rapidly aging population, the timing of this tough and important book could not be better."
New York Journal of Books
“ A pitch-perfect call for health care changes in the mechanized deaths many suffer in America.”
Boston Globe
"Butler’s advice is neither formulaic nor derived from pamphlets...[it] is useful, and her challenge of our culture of denial about death necessary...Knocking on Heaven’s Door [is] a book those caring for dying parents will want to read and reread. [It] will help those many of us who have tended or will tend dying parents to accept the beauty of our imperfect caregiving."
New York Times
"[Knocking on Heaven's Door is] a triumph, distinguished by the beauty of Ms. Butler's prose and her saber-sharp indictment of certain medical habits. [Butler offers an] articulate challenge to the medical profession: to reconsider its reflexive postponement of death long after lifesaving acts cease to be anything but pure brutality."
Christianity Today
“Astonishingly beautiful. [Butler’s] honest and challenging book is an invitation to all people—Christians included—to reconsider the meaning of drawn out deaths and extreme measures in a historic—and eternal—perspective.”
Joan Halifax
"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.
Dr. Sherwin B. Nuland

“This is a book so honest, so insightful and so achingly beautiful that its poetic essence transcends even the anguished story that it tells. Katy Butler’s perceptive 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 21st century: emotional, spiritual, medical, financial, social, historical and even political. And yet, though such valuable insights are presented with a journalist’s clear eye, they are so skillfully woven into the narrative of her beloved parents’ deaths that every sentence seems to come from the very wellspring of the human spirit that is in her. This elegiac volume is required reading for every American adult; it has about it a sense of the universal.”
Sherwin B. Nuland
“This is a book so honest, so insightful and so achingly beautiful that its poetic essence transcends even the anguished story that it tells. Katy Butler’s perceptive 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 21st century: emotional, spiritual, medical, financial, social, historical and even political. And yet, though such valuable insights are presented with a journalist’s clear eye, they are so skillfully woven into the narrative of her beloved parents’ deaths that every sentence seems to come from the very wellspring of the human spirit that is in her. This elegiac volume is required reading for every American adult; it has about it a sense of the universal.”
author of Reviving Ophelia and Seeking Peace: Chronicles of the Worst Buddhist in the World - Mary Pipher
“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.”
author of King Leopold's Ghost and To End All Wars - Adam Hochschild
"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.”
author of Reading my Father - Alexandra Styron
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.”
author of My Mother, Your Mother: Embracing "Slow Medicine,'" the Compassionate Approach to Caring for Your Aging Lov - Dennis McCullough
"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.
author of Help, Thanks, Wow - Anne Lamott
“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.”
Kirkus Reviews
A forthright memoir on illness and investigation of how to improve end-of-life scenarios. "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," writes journalist Butler. But when is it time to stop intervening and let nature take its course? Should medical procedures be performed to save a life regardless of the monetary costs and the toll it takes on an entire family? These are the questions Butler examines in this honest, moving memoir, as she details the last several years of her father's life after he suffered a severe stroke. The once-vibrant, sometimes-caustic man she knew from her childhood was no longer fully there, and a pacemaker was installed prior to a hernia operation to help ward off complications from this procedure. However, the device didn't prevent a slow, steady decline of body and mind, and Butler describes the often agonizing physical and emotional toll this disintegration took on her father, her mother (who was the primary caregiver) and herself. Her mother gave up having a life of her own as she tended to her husband, who more resembled an adult-sized infant than the husband she had known and loved for more than 40 years. Ultimately, the placement of the pacemaker prolonged a life that possibly should have ended many years before, and it is this decision that Butler struggles with throughout the book. When her mother grew ill, she refused treatments and "died like a warrior. Her dying was painful, messy, and imperfect, but that is the uncontrollable nature of dying." With candidness and reverence, Butler examines one of the most challenging questions a child may face: how to let a parent die with dignity and integrity when the body has stopped functioning. Honest and compassionate thoughts on helping the elderly through the process of dying.
author of A Path with Heart - Dr. Jack Kornfield
“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.”
More Magazine
"This braid of a book...examines the battle between death and the imperatives of modern medicine. Impeccably reported, Knocking on Heaven's Door grapples with how we need to protect our loved ones and ourselves."
author of Help, Thanks, Wow - Anne Lamott
“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. ... 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."
author of King Leopold’s Ghost and To End All Wars - Adam Hochschild
"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.”
author of Reviving Ophelia and Seeking Peace: Chronicles of the Worst Buddhist in the World - Mary Pipher
“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.”
author of Reading my Father - Alexandra Styron
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.”
author of My Mother, Your Mother: Embracing "Slow Medicine,'" the Compassionate Approach to Cari - Dennis McCullough
"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, ... 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."
Appeal Democrat
"A stunning book, truthful and its dignified, and it could be a conversation-starter. If there's a need for that in your family -- or if you only want to know what could await you -- then read Knocking on Heaven's Door. You won't regret it."
San Francisco Chronicle
"Knocking on Heaven's Door is more than just a guide to dying, or a personal story of a difficult death: It is a lyrical meditation on death written with extraordinary beauty and sensitivity."
Shelf Awareness
"Compassionate and compelling."
New York Times Book Review - Abraham Verghese
Knocking on Heaven’s Door is a thoroughly researched and compelling mix of personal narrative and hard-nosed reporting that captures just how flawed care at the end of life has become."
108ZenBooks.com
“This book stands as an act of profound courage. It is brutally honest about the nature of relationships, searingly insightful in the potential of healing, and shines and intense light on our ignorance…For that alone, it is an important one to read.”
Spirituality and Health Magazine - Lindsey Crittenden
"Shimmer[s] with grace, lucid intelligence, and solace."
Mother Jones - Zaineb Mohammed
"[An] unflinching look at America's tendency to overtreat [that] makes a strong case for the 'slow medicine' movement, which recognizes that 'dying can be postponed, but aging cannot be cured.'"
Minneapolis Star Tribune - Laurie Hertzel
"[A] deeply felt book...[Butler] is both thoughtful and passionate about the hard questions she raises — questions that most of us will at some point have to consider. Given our rapidly aging population, the timing of this tough and important book could not be better."
BookPage - Kelly Blewett
"Butler argues persuasively for a major cultural shift in how we understand death and dying, medicine and healing. At the same time, she lays her heart bare, making this much more than ideological diatribe. Readers…should be sure to pick up this book. It is one we will be talking about for years to come.”
New York Journal of Books - Roberta E. Winter
“ A pitch-perfect call for health care changes in the mechanized deaths many suffer in America.”
Boston Globe - Suzanne Koven
"Butler’s advice is neither formulaic nor derived from pamphlets...[it] is useful, and her challenge of our culture of denial about death necessary...Knocking on Heaven’s Door [is] a book those caring for dying parents will want to read and reread. [It] will help those many of us who have tended or will tend dying parents to accept the beauty of our imperfect caregiving."
New York Times - Abigail Zuger
"[Knocking on Heaven's Door is] a triumph, distinguished by the beauty of Ms. Butler's prose and her saber-sharp indictment of certain medical habits. [Butler offers an] articulate challenge to the medical profession: to reconsider its reflexive postponement of death long after lifesaving acts cease to be anything but pure brutality."
Christianity Today - Rachel Marie Stone
“Astonishingly beautiful. [Butler’s] honest and challenging book is an invitation to all people—Christians included—to reconsider the meaning of drawn out deaths and extreme measures in a historic—and eternal—perspective.”
Library Journal
★ 09/15/2013
Butler's story about the deaths of her parents illustrates the good and the bad of health care in America and the need for those affected to make more informed choices. The author shares many memories of her parents so that readers will see them as real people, making their experience all the more compelling. With her father, Butler tried to get the best care she could, including help for her mother in the home, but with a health-care system that pays for interventions such as surgical procedures instead of prioritizing therapy or regular help, it was difficult. Butler makes readers question the ethics of extreme measures to prolong life and the need for discussions of living wills, DNR bracelets, and other end-of-life issues. She also makes a case for hospice or palliative care being available for all who want or need it. While Butler's father's death was difficult, her mother was able to die the way she wanted. VERDICT An excellent book for adult children who are concerned about their parents and anyone who wants to learn more about end-of-life choices.—Margaret Henderson, Virginia Commonwealth Univ. Libs., Richmond

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Product Details

ISBN-13:
9781451641974
Publisher:
Scribner
Publication date:
09/10/2013
Pages:
336
Sales rank:
716,108
Product dimensions:
5.60(w) x 8.50(h) x 1.00(d)

Read an Excerpt

Knocking on Heaven’s Door

PROLOGUE


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.

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What People are saying about this

Mary Pipher
“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.”
Alexandra Styron
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.”
Adam Hochschild
"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.”
Joan Halifax
"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.
Jack Kornfield
“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.”
Anne Lamott
“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.”
Dennis McCullough
"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.

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