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Summary
Summary
In Knocking on Heaven's Door,award-winning journalist Katy Butler describes in vivid and poetic prose what happened to her family as her parents were moved from a ripe and vigorous old age toward a long and protracted phase of dying. After suffering a stroke at age 78, Butler's father Jeffrey, a retired professor, was left entirely dependent on the care of his wife, Butler's mother. Six years later, with a heartbeat managed by a pacemaker put in by an unthinking cardiologist, Jeff's body had outlived his brain and his wife was exhausted, sick and depleted from nearly a decade of full-time caregiving. When Butler and her mother appeal to doctors, ethicists and lawyers for help getting the pacemaker turned off-allowing Jeff a natural, painless death rather than the extended, diminished life provided by the pacemaker-they are seen as monsters.
Knocking on Heaven's Doordocuments the rebellion brewing against a broken and morally adrift medical system that has morphed from saving lives to prolonging dying. Butler shows how our culture turns to technology to solve the spiritual problem of death, and how we are ignorant of the ancient and modern realities of dying. Knocking on Heaven's Dooris a profoundly moving, expertly researched mediation that will serve as a map for the 78 million baby boomers, caring for elderly parents, facing a medical system that robs death of its sacredness and intensifies its suffering.
Reviews (5)
Publisher's Weekly Review
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.) (c) Copyright PWxyz, LLC. All rights reserved.
Booklist Review
Once upon a time we knew how to die. We knew how to sit at a deathbed. In this sad yet valiant and exacting memoir, Butler, an award-winning science writer for the New Yorker and other venues, recounts the plight of her elderly father and the toll his many afflictions exacts on herself and her mother. He suffers a stroke followed by progressive dementia, speech difficulty, visual loss, and incontinence. An injury during WWII already cost him an arm. Before undergoing hernia surgery, a permanent cardiac pacemaker is implanted. As his mind and body further deteriorate, Butler and her mother plead with doctors to deactivate the device to no avail. When he finally dies from pneumonia, the pacemaker continues functioning inside the dead man's chest, a chilling reminder of our culture's idolatrous, one-sided worship of maximum longevity. About a year later, his physically and emotionally exhausted wife expires. Butler looks at the strain on caregivers, feelings of guilt and grief, the untapped utilization of palliative care, and the haziness between saving a life and prolonging a dying. --Miksanek, Tony Copyright 2010 Booklist
New York Review of Books Review
Exploring the flaws of American health care at the end of life. IN 1968, a letter to The British Medical Journal titled "Not Allowed to Die" described the ordeal of a retired 68-year-old doctor admitted to "an overseas hospital" (almost certainly in America) with metastatic stomach cancer. After much of his stomach was surgically removed and a blood clot cleared from his lung , he asked that "no further steps be taken to prolong his life, for the pain of his cancer was now more than he would needlessly continue to endure." Two weeks later the unfortunate doctor had a heart attack in the hospital. His heart was shocked and restarted five times in a single night; morning found him in a persistent vegetative state. His body remained alive for another three weeks. That hellish situation , rare in the rest of the world, is all too common in this country. Although most of us claim no desire to die with a tube down our throat and on a ventilator, the fact is, as Katy Butler reminds us in "Knocking on Heaven's Door," a fifth of American deaths now take place in intensive care, where 10 days of futile flailing can cost as much as $323,000, as it did for one California man. Butler's introduction to the surreal world of health "care" at the end of life was precipitated by the sudden illness of her father, a native of South Africa . Jeffrey Butler lost his arm while serving in World War II . He married, earned a Ph.D. from Oxford and settled into academic life in the United States . He was a charismatic father, the sort who 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!' " At 79 he was active and enjoying retirement when he suffered a stroke . Soon after hospitalization a "discharge planner" told the family that Jeffrey had to be immediately transferred to a neurological rehabilitation facility. "Only later would I understand the rush," Butler writes. "The hospital was losing money on him with every passing day. Out of $20,228 in services performed and billed, Medicare would reimburse Middlesex Memorial only $6,559, a lump sum based on the severity of my father's stroke diagnosis." A year later , her father was outfitted with a pacemaker. The device would keep his heart functioning even as he descended into dementia and almost total physical helplessness over the next five years. Butler describes how her mother struggled to bear the burden. "On the phone with my brothers and me that winter, she cried. She loved my father. She'd vowed to be with him in sickness and in health, she told us - and who was she to think they'd escape the sickness part? He'd taken care of her for 50 years, and now it was her turn. But in ways we were only beginning to fathom, my father was no longer her husband, and she was no longer his wife ." Her mother's life stopped. Once a passionate and talented artist, she now devoted her life to looking after her husband the way she'd once cared for her children, bathing him and brushing his teeth . She no longer went to yoga or saw her friends. She'd wake two or three times at night to change her husband's soiled sheets. "At 77, she had become one of 29 million unpaid, politically powerless and culturally invisible family caregivers - 9 percent of the United States population - who help take care of someone over 74." Children are not spared. Butler, living on the opposite coast from her parents , found herself joining the "roll-aboard generation, the legions of long-distance daughters and the smaller contingent of sons who hoard their frequent-flier miles and often, but never often enough, roll their suitcases on and offplanes." A generation earlier, she says, her role would have been decided. She would have given up her life in California, moved home and "taken up the ancient burden of unpaid female altruism. It was a role women were once born for: the devoted wife, the selfless daughter-in-law, the uncomplaining, impoverished maiden aunt and the unmarried daughter like Emily Dickinson , who stayed in her parents' home throughout their dying years, and wrote her poems shuttered in an upstairs bedroom." As the family struggles, kindness and help are discovered in unexpected places: an orderly who treats Jeffrey with gentleness and respect and teaches Katy "how to love my helpless, broken and infinitely slowly dying father." Later, when Butler's mother is crumpling under the stress of caring for her husband at home, an angel arrives in the form of Toni , who helps her several days a week , and whom Butler calls "one of two and a half million street saints across the country who, despite poor pay and the harshness of their own lives, draw on unseen wells of compassion and emotional skill for families like mine." The Butlers pay Toni well, but the author notes that the going rate for this kind of work is generally "immorally low." Toni was not protected by the federal Fair Labor Standards Act , entitled to minimum wage or overtime pay, the reason being that her services are interpreted as mere companionship. "In a further reflection of our culture's willingness to pay millions for high-tech 'cures' (usually provided by men) but very little for ongoing care (usually provided by women), repeated attempts to cover home workers under federal labor laws have run into resistance since the 1930s and into the first decade of the 21st century," Butler writes. Butler finds that the health care system - and society - seem quite unprepared for a patient like her father. Had he received a diagnosis of a terminal illness, the family would have been supported by a Medicare-funded hospice team. If he had died, there would have been a funeral, condolences, company. "But there is no public ceremony to commemorate a stroke that blasts your brain utterly, and no common word to describe the ambiguous state of a wife who has lost her husband and become his nurse." Much of what ails health care, as Butler discovers, revolves around reimbursement issues. Doctors are paid to do things to people, not for people. She takes particular issue with a cardiologist's decision to put in a pacemaker despite the reservations of her father's trusted physi-cian . If the physician had been persistent and taken the time to argue and stop the pacemaker from being put in, "Medicare would have effectively penalized him," Butler writes. He would not have been compensated for getting in touch with specialists. He would have received just $54 for a 15-minute office visit and only an extra $20 to $40 if he submitted paperwork "justifying a longer meeting." In 2009, a set payment of $200 for such talks was suggested as part of health care reform, but after distortion by conservatives, "it was widely decried as a reimbursement for 'death panels' and stripped from the bill. As a result, doctors of all sorts, especially oncologists, are reimbursed well for administering close-to-futile second- and third-line treatments and reimbursed hardly at all - financially punished, in fact - if they take the time to explain the case for doing less." The flow of money in health care has created many specialists ("partialists" might be a better term) to address each organ, but few people to minister to the emotional or spiritual needs of the dying person or family. Family members who might have kept vigil or heard the dying's last words had to abide by visiting hours. "Often there were no 'last words' because the mouths of the dying were stopped by the tubes of respirators and their minds sunk in chemical twilights to keep them from tearing out the lines that bound them to earth." Butler imagines a day when we might have an "811" number that will bring "a flying squad of palliative care and hospice doctors and nurses to the home to provide reassurance to the panicked family and pain management to the dying, as an alternative to a brutal final tour through 911, the E.R. and the I.C.U." "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, reimbursementdriven model to one that truly cares for the patient and the family. And since life is, after all, a fatal illness and none of us are spared, there is an urgent need for us in America to reclaim death from medicine and, whenever possible, enable the ritual of dying at home with family present (and aided by all medicine can offer) so that we are allowed to take our leave from earth with dignity. KNOCKING ON HEAVEN'S DOOR The Path to a Better Way of Death By Katy Butler Illustrated. 322 pp. Scribner. $25. A fifth of American deaths take place in intensive care, where 10 days of futile flailing can cost as much as $323,000. ABRAHAM VERGHESE, professor and senior associate chairman for the theory and practice of medicine at Stanford University, is the author of the novel "Cutting for Stone."
Kirkus Review
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.]] Copyright Kirkus Reviews, used with permission.
Library Journal Review
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 (c) Copyright 2013. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.
Excerpts
Excerpts
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. Excerpted from Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.