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

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"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" (Abraham Verghese, The New York Times Book Review). This bestselling memoir-hailed a "triumph" by The New York Times-ponders the "Good Death" and the forces within medicine that stand in its way. Award-winning journalist Katy Butler was living thousands of miles from her aging parents when the call came: her beloved seventy-nine-year-old father had suffered a crippling stroke. Katy and her mother joined the more than 28 million Americans who are shepherding loved ones through their final declines. Doctors outfitted her father with a pacemaker, which kept his heart going while doing nothing to prevent a slide into dementia, near-blindness, and misery. When he said, "I'm living too long," mother and daughter faced wrenching moral questions. Where is the line between saving a life and prolonging a dying? When do you say to a doctor, "Let my loved one go?". When doctors refused to disable the pacemaker, condemning her father to a lingering death, Butler set out to understand why. Her quest had barely begun when her mother, faced with her own grave illness, rebelled against her doctors, refused open-heart surgery, and met death the old-fashioned way: head-on. Part memoir, part medical history, and part spiritual guide, Knocking on Heaven's Door is a map through the labyrinth of a broken medical system. Technological medicine, obsessed with maximum longevity, is creating more suffering than it prevents. Butler chronicles the rise of Slow Medicine, a movement bent on reclaiming the "Good Deaths" our ancestors prized. In families, hospitals, and the public sphere, this visionary memoir is inspiring the difficult conversations we must have to light the path to a better way of death. "A lyrical meditation written with extraordinary beauty and sensitivity" (San Francisco Chronicle). 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." - New York Times Book Review - Abraham Verghese. "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." - Appeal Democrat. "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." - San Francisco Chronicle. "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." - Boston Globe - Suzanne Koven. "Shimmer[s] with grace, lucid intelligence, and solace." - Spirituality and Health Magazine - Lindsey Crittenden. "[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." - New York Times - Abigail Zuger. 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 Help, Thanks, Wow - Anne Lamott. 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 Reviving Ophelia and Seeking Peace: Chronicles of the Worst Buddhist in the World - Mary Pipher. "[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." - Minneapolis Star Tribune - Laurie Hertzel. 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 Reading my Father - Alexandra Styron. "Compassionate and compelling." - Shelf Awareness. A pitch-perfect call for health care changes in the mechanized deaths many suffer in America. - New York Journal of Books - Roberta E. Winter. "[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.'" - Mother Jones - Zaineb Mohammed. "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. - BookPage - Kelly Blewett. 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. - Christianity Today - Rachel Marie Stone. 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. - 108ZenBooks.com. 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." - Dr. Sherwin B. Nuland. "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." - Joan Halifax. "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." - More Magazine. 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. - author of A Path with Heart - Dr. Jack Kornfield. "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 King Leopold's Ghost and To End All Wars - Adam Hochschild. "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." - author of My Mother, Your Mother: Embracing "Slow Medicine,'" the Compassionate Approach to Cari - Dennis McCullough. "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." - San Francisco Chronicle. 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. - The New York Times Book Review - Abraham Verghese. 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.) - Publishers Weekly. 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. - Christianity Today. "[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." - New York Times. "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." - Boston Globe. A pitch-perfect call for health care changes in the mechanized deaths many suffer in America. - New York Journal of Books. "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. - BookPage. "[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." - Minneapolis Star Tribune. "[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.'" - Mother Jones. "Shimmer[s] with grace, lucid intelligence, and solace." - Spirituality and Health Magazine. 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. - From the Publisher. 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. - Doctor - Sherwin B. Nuland. 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. - author of A Path with Heart - Jack Kornfield. *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 - Library Journal. 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. - Kirkus Reviews