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

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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 ...

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

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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.

Winner of the 2013 Books for a Better Life Award for First Book

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Editorial Reviews

From Barnes & Noble

This book was written because of a pacemaker the size of a pocket watch that had kept Katy Butler's heart beating long after his brain had essentially died. Struck by that ongoing, tragic situation, Butler wrote a New York Times article that evoked reader stories that only redoubled her commitment to research and write a fuller account of medical technologies that are running away with us. Knocking on Heaven's Door describes how modern medical inventions, commerce, and good intentions are prolonging lives long after any real purpose is served. Ann Lamott called this book "some of the most important material I have read in years, and so beautifully written." Now in trade paperback.

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."
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. [This book's] tenderness, beauty, and heart-breaking honesty matches the stunning data on dying in the West. A splendid and compassionate endeavor."
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.”
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."
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
The Barnes & Noble Review

Death has the distinction of being the subject we'd all like most to avoid thinking about, but can't. Until not long ago, the reason for that was straightforward: the mortality rate continues to run at a clear-cut 100 percent, a fact that grows at once easier and more difficult to meditate on the older one gets. But for several decades now, members of an increasingly long-lived society have had more than our own final destination to preoccupy us. We are also faced with those of our parents.

Novelists and other chronologists of the human consciousness have long known that the death of a parent is an emotionally traumatic event. But in the era of medically extended twilight years, the economics and psychology of the resulting scenarios can combine to produce something new — an unholy mess, a kind of nightmarish and ghoulish business where the pain of loss can be swamped by the cost of its postponement. Because we still deal with our discomfort around death with silence, there is a lot of room in the subject for a real researcher to uncover. And in this field, they have.

The signature work around the problem is still probably Jessica Mitford's The American Way of Death — though the silence she broke was around what happened after death, rather than before When it was first published in 1962, the book was a runaway bestseller, the kind of revelatory report that book publishers rarely manage to produce in our sped-up world. Mitford was married to a man who, as a labor lawyer, was interested in obtaining low-cost funerals for union members. As such, he got a bee in his bonnet about the way he saw funeral directors cheat, overcharge, and otherwise financially exploit people who were not really in a place where they could afford to bargain. Mitford, who had been working as an investigative journalist focused on civil rights abuses, took up the subject for a small left-wing magazine, got a book contract, and then wrote a sort of epic tour of the industry's pieties about itself and the contrasting economic reality. Undertakers, for example, routinely lied to their clients about the state of the law, saying for example that embalming was required when it was not. The government had to step in and outlaw this, so routine was it as a practice.

In the introduction to a revised edition Mitford put out shortly before her death, she catalogued the unsettled reaction of funeral directors across the country to the sudden popularity of her book:

When Mortuary Management began referring to me as Jessica tout court, I felt I had arrived at that special pinnacle of fame where the first name only is sufficient identification, as with Zsa Zsa, Jackie, or Adlai. Greedily I gobbled up the denunciations: "the notorious Jessica Mitford"; "shocker"; "stormy petrel."
It isn't hard to imagine why Mitford was pleased to be the "petrel" of the story. In no small way her book reverberates through the culture of the American funeral even now. Watch something like the television show Six Feet Under and the scent of Mitford is all over it, from the funny product names to the references to state rules and regulations. It's become a commonplace to observe that funerals are something a little crass, actually, and mutter about the "death industry" in a way Mitford made possible.

The economics of death that are the subject of Katy Butler's Knocking on Heaven's Door present quite a different challenge, though The American Way of Death gets a nod in passing. Much of the strangeness and idle cruelty of Butler's experience arose in an entirely different kind of death industry: the chaotic, indifferent manner in which the American health care complex addresses our final years. Butler's book grew out of the experience of her father's long-drawn-out senescence, enabled primarily by the installation of a pacemaker in his heart that kept it beating long after his other faculties withered. Eventually, Butler and her mother, also aging, were put to the point of having to beg and cajole the medical establishment to turn the thing off so that her father could, eventually, die in peace. Your average pacemaker has a lifespan of about five years, the length of its battery power.

If Butler cannot offer quite the devastating social critique that Mitford could, in part that's because her tale lacks that most crucial of socially motivating factors: a clear villain. In Mitford's case the culprit was the commercial motive of a thousand small business owners. It's easier to create a lively romp, even in a dark subject, when there is someone very clearly to blame. In the healthcare industry, however, in spite of the very best efforts of avaricious insurance companies and horrific hospital administration, the disaster that awaits most of the elderly has little to do with the hunger for profit. With respect to Butler's father, for example, the problem was a cardiologist who, in his eagerness to resolve a short- term heart problem, forgot to calculate what his patient, who had already suffered a stroke, could expect in future. That's not so much greed as it is human optimism tripping over its own feet.

The pathos of that contradiction lends extra bite to the pathos of death itself. And Butler's tale is both compelling and affecting. She has a knack for both conjuring up deep emotion and being spare in its delivery, as in her description of her father's deteriorating cognitive abilities:
What did it feel like, I wonder, to peer out at the world through the shifting keyholes of that generous soul and educated mind, with a black spot in his field of vision and his ears stopped with hearing aids that he could no longer put in without help? What was it like to have holes appear and disappear in memory like film jammed in a projector and melting?
But this approach is not particularly effective as a mode of social criticism. Butler hints at what the solution might be, most tellingly pointing to the fact that the "death panels" so widely reviled in the debate about Obamacare were in fact meant to function as modes of planning humane end-of-life care. It's no accident that, as Butler remarks, "anyone who attempts to open a conversation about rehumanizing modern death must be prepared to weather charges of medical rationing, promoting 'death panels,' canonizing Dr. Kevorkian, and discrimination against the aged, demented, or disabled."

The hysteria of which those accusations are a symptom serves to conceal that the solution is an entirely different sort of health care system than currently exists in America, one which is less expensive and more humane. It would be one that doesn't require a person to "spend down" his or her assets on medical care that at least as overpriced as much as it is unnecessary.

It isn't that the ravages of death will then cease to occupy our thoughts, or that we won't still be uncomfortable with our direct experiences of it. Parents will continue to die, and we will continue to be grieve. A few undertakers will still overcharge us; probably no one will escape an unnecessary procedure — or two, or three. But it would be a world in which silence didn't emerge from anxious powerlessness in the face of bureaucracy but rather from the calm of knowing that in the end, all you can ask of everyone — and you can ask it — is their best.

Michelle Dean is a journalist, critic, and erstwhile lawyer whose writing has appeared at The New Yorker, Slate, The Nation, and The Awl.

Reviewer: Michelle Dean

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Product Details

  • ISBN-13: 9781451641974
  • Publisher: Scribner
  • Publication date: 9/10/2013
  • Pages: 336
  • Sales rank: 250,742
  • Product dimensions: 5.60 (w) x 8.50 (h) x 1.00 (d)

Meet the Author

Katy Butler, a former finalist for a National Magazine Award, has written for The New Yorker, The New York Times Magazine, Vogue, and other publications. Her work is anthologized in The Best American Science Writing, The Best American Essays, and The Best Buddhist Writing. A winner of the “Science in Society” award from the National Association of Science Writers, she lives in northern California.

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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.

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Sort by: Showing all of 20 Customer Reviews
  • Posted September 12, 2013

    I Also Recommend:

    Knocking on Heavens Door is a fantastic book. The author takes u

    Knocking on Heavens Door is a fantastic book. The author takes us inside the private world of her parents as they struggled with embracing death rather than wanting to waste away. Some will argue with Kathy Butler’s views, but she presents them clearly with obviously well-thought out reasons. It is an excellent book.

    9 out of 9 people found this review helpful.

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  • Posted October 3, 2013

    I Also Recommend:

    Knocking on Heaven's Door is a remarkable book. It takes us on a

    Knocking on Heaven's Door is a remarkable book. It takes us on a philosophical journey on whether we should have the right to end our lives when life is no longer worth living. Should we be allowed to die with dignity on our own terms? It is a fascinating question and makes this a fascinating book. It is very well written and well worth reading.

    5 out of 5 people found this review helpful.

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  • Anonymous

    Posted September 14, 2013

    An incredible reminder that dying is about living individuals an

    An incredible reminder that dying is about living individuals and their families; 
    that their are times we need to step back, as a society and as individuals, to think
    about our actual intentions.

    4 out of 4 people found this review helpful.

    Was this review helpful? Yes  No   Report this review
  • Posted December 11, 2013

    Highly Recommended

    This is a book for anyone with aging parents or who plans on aging themselves. It makes you realize that you had better give more thought to planned medical procedures, thinking through what that first step could mean down the road. When have we done enough - a difficult thing to know - and when should we stop, letting nature take its course.

    1 out of 1 people found this review helpful.

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  • Posted November 27, 2013

    Few people in this world can write about such a commonly experie

    Few people in this world can write about such a commonly experienced event—a “bad death”—of a parent as poignantly, lovingly and as wisely as Ms. Butler has in her new book.  Erudition and caring are shown from beginning to end of this timely and important book. There are lessons in this book literally for everyone—old, young, parent, child, spouse, medical professionals at all levels, particularly physicians and especially cardiac specialists!

    Ms. Butler starts where most of us do—“Until my parents entered their late seventies, [my remote siblings and I] assumed that they would have robust, vigorous old ages, capped by some brief and vaguely imagined final illness. In my personal fantasy, death would meet my father suddenly a happy afternoon in my mother’s garden, blowing leaves into piles with a rented leaf blower.” Instead of a “Solyent Green-like” ending, going “gently into that good night,” we would all prefer, Ms. Butler’s father suffered a debilitating stroke, which propelled her Dad, her mother and Ms Butler (though not her two brothers, because as is far too often the case, those left to do the heavy lifting for ailing and aging parents are daughters not sons) into the dark abyss—the so-called “black days.” That abyss is described throughout so palpably that I began to relive my own parents’ deaths all over gain from an all-too-common lens experienced unwillingly by so many.

    4OurElders is primarily about long term care housing choices and this book has nothing to do with that subject; however, there are many things about long term care that can be gleaned from this book.  Like, the utter uselessness of some doctors and lawyers who get involved in end-of-life decisions; the difference between “slow medicine” ( chosen by Ms. Butler’s  Mother when she faced her own death within two years of her Father’s death and highly desirable for many, including me, entailing patient-centeredness in all decisions, unrushed decisions, care vs. cure) and “fast medicine” (imposed on Ms. Butler’s father and desired by some, and okay for me when a cure is really achievable, characterized by a barrage of rapidly prescribed tests and treatments with little regard to their human costs—fixing rather than healing); how to make critical choices when faced with hard decisions for a loved one or ourselves; the difference between having medical rights (like the deactivation of her father’s pacemaker) and the inability to exercise those rights (because neither her or her mother could find a doctor willing to implement such a  choice); what it is like when the “golden years” turn into interminable “years of lead” that end up, as in her parents’ case, “devastating two lives;” and how to bring something good out of all the bad.  Ms. Butler did find the good, discovering that, despite all the hardships she experienced during her father’s final years, her father’s stroke actually brought them so much closer together through things like their love letters to each other.  Near the end, she recognized that, while his death would be better for her father and mother, it would not be and was not better for her.  Hard but beautiful stuff indeed!

    Finally, the book reveals a timely lesson that progress does not always come without pain. The unbelievable (financial) story of the pacemaker--the true antagonist of her book—is eruditely told with the backdrop of  enactment of Medicare legislation, which had incredibly bad  unintended consequences experienced throughout its early implementation in the mid-to-late 1960s. From this retelling, maybe just maybe this history lesson can teach us that the rollout of the Affordable Care Act (the largest and most far-reaching medical-related legislation since Medicare) may not be as bad as the much publicized computer failings seem to suggest. Maybe the website blunders are NOT something we will be unable to recover from; maybe, with a little good faith and determination we can make it better for all of us in the near future and for the long term. Maybe a little “slow medicine” in this context would be advisable for political pundits, legislators and other negativists who see nothing but a “falling sky” in a floundering website.

    Again, we salute Ms. Butler for this wonderful book.  Do NOT miss her chapters at the end of the book, outlining a “map through the labyrinth” of death and dying, in which she offers excellent advise on what she calls the “new art of dying.”

    1 out of 1 people found this review helpful.

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  • Posted November 24, 2013

    more from this reviewer

    VERY important info!

    This book should be read by everyone!!! At some point in everyone's life they will need the information about their healthcare, their loved ones healthcare, & as a senior citizen it is especially informative. I now definitely know what medical procedures I don't want performed on me & my loved ones!

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted October 2, 2014

    Hi

    Hi

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  • Anonymous

    Posted August 29, 2014

    This is an eye-opening, informative book that everyone should re

    This is an eye-opening, informative book that everyone should read-EXCELLENT!

    Was this review helpful? Yes  No   Report this review
  • Posted June 13, 2014

    The hard road

    the difficult responsibility of caring for aging parents is the basis for this book . There are many problems to face . Please do not take all that is said to be fact this can mislead you. The right treatment for some may not be right for all. This book makes you think but take all advise with a grain of salt.

    Was this review helpful? Yes  No   Report this review
  • Posted May 16, 2014

    Must Read

    A must read book.- everyone should be informed and know what can happen in your future

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  • Posted May 11, 2014

    Comforting and Provocative

    I wish I had read this book during the years I was responsible for caring for my aging Dad and his affairs. It was comforting to read the author's thoughts and experiences which were so close to my own. The book also helps you to know that you're not alone and that you do have some control of things. The author's tips are realistic, and she provides a comprehensive list of resources for most every situation. This is a great read for anyone.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted February 14, 2014

    Eye opening

    A very interesting book about the way doctors treat patients and the way that we should, and don't react to death. Very eye opening as to the costs of care and the cost to human lives!

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  • Posted December 26, 2013

    more from this reviewer

    Good Book

    Insightful glimpse into death & dying as an industry

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  • Anonymous

    Posted October 25, 2013

    Highly Recommend

    Highly Recommend, I skipped through some of it but the majority of it should be read by everyone.

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    Posted October 4, 2013

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    Posted January 17, 2014

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    Posted October 4, 2013

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    Posted October 11, 2013

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    Posted August 12, 2014

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    Posted October 11, 2013

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