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Knocking on Heaven's Door: The Path to a Better Way of Death Paperback – June 10, 2014
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This groundbreaking blend of memoir and investigative reporting--hailed as "Notable Book of the Year" by The New York Times--ponders the "Good Death" and the forces that stand in its way.
Katy Butler was living thousands of miles away when her old but seemingly vigorous father suffered a crippling stroke. She flew East and in time became her parents' part-time caregiver, thoroughly re-embroiled in the childhood family dynamics she thought she'd left behind. Her father's natural suffering was bad enough. But in time she saw it prolonged by an advanced medical device -- a pacemaker -- that kept his heart going while doing nothing to prevent his slide into dementia, near-blindness, and misery. When he said, "I'm living too long," Katy and her mother faced wrenching moral questions, faced by millions of America's 28 million caregivers. Where is the line between saving a life and prolonging a dying? When do you say to a doctor, "Let my loved one go?"
After doctors refused to disable the pacemaker, Butler set out to understand how we had transformed dying from a natural process to a technological flail. Her quest had barely begun when her mother, faced with her own grave illness, rebelled against her doctors and met death 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. Its provocative thesis is that technological medicine, obsessed with maximum longevity, often creates more suffering than it prevents. It also 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 passionate conversations about lighting the path to a better way of death.
"A lyrical meditation written with extraordinary beauty and sensitivity" ( San Francisco Chronicle).
- Print length368 pages
- LanguageEnglish
- PublisherScribner
- Publication dateJune 10, 2014
- Dimensions5.5 x 1 x 8.38 inches
- ISBN-109781451641981
- ISBN-13978-1451641981
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“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, author of How We Die: Reflections of Life’s Final Chapter
“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." -- Anne Lamott ― author of Help, Thanks, Wow
"Shimmer[s] with grace, lucid intelligence, and solace." -- Lindsey Crittenden ― Spirituality and Health Magazine
"[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.'" -- Zaineb Mohammed ― Mother Jones
"[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." -- Laurie Hertzel ― Minneapolis Star Tribune
"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.” -- Kelly Blewett ― BookPage
“ A pitch-perfect call for health care changes in the mechanized deaths many suffer in America.” -- Roberta E. Winter ― New York Journal of Books
"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
"A forthright memoir on illness and investigation of how to improve end-of-life scenarios. 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. Honest and compassionate..." ― Kirkus Reviews
“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.” -- Mary Pipher ― author of Reviving Ophelia and Seeking Peace: Chronicles of the Worst Buddhist in the World
"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.” -- Adam Hochschild ― author of King Leopold’s Ghost and To End All Wars
“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.” -- Dr. Jack Kornfield ― author of A Path with Heart
"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, PhD, Founding Abbot, Upaya Institute/Zen Center and Director, Project on Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death
"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." -- Dennis McCullough ― author of My Mother, Your Mother: Embracing "Slow Medicine,'" the Compassionate Approach to Cari
“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
“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.” -- Alexandra Styron ― author of Reading my Father
"Compassionate and compelling." -- Shelf Awareness
"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." -- Suzanne Koven ― Boston Globe
"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 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." -- Abigail Zuger, MD ― New York Times
"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
“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.” -- Rachel Marie Stone ― Christianity Today
About the Author
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Product details
- ASIN : 1451641982
- Publisher : Scribner; Reprint edition (June 10, 2014)
- Language : English
- Paperback : 368 pages
- ISBN-10 : 9781451641981
- ISBN-13 : 978-1451641981
- Item Weight : 11.6 ounces
- Dimensions : 5.5 x 1 x 8.38 inches
- Best Sellers Rank: #188,488 in Books (See Top 100 in Books)
- #147 in Sociology of Death (Books)
- #587 in Love & Loss
- #6,117 in Memoirs (Books)
- Customer Reviews:
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About the author
Biography
Katy Butler is a public speaker, journalist-author, and teacher of memoir writing at Esalen Institute. She is best known for books about medicine's changing approach to the end of life. A graduate of Wesleyan University, she is the author of a critically acclaimed investigative memoir, "Knocking on Heaven’s Door: The Path to a Better Way of Death" (2013); and a nonfiction handbook for the last third of life called "The Art of Dying Well: A Practical Guide to a Good End of Life" (2019.)
Her main areas of interest are: health; aging; death; bioethics; aging parents; family caregiving; the structure and shortcomings of American medicine; domestic and sexual violence; neuroscience; human behavior; addiction; psychotherapy; meditation; and religious and spiritual life.
Her writing has appeared in many publications including The New York Times, the Wall Street Journal, JAMA-Internal Medicine, The New Yorker, Atlantic, and Scientific American. It has earned the Science in Society Prize from the National Association of Science Writers; a Books for a Better Life "best first book" award; fellowships and residencies at Yaddo, Blue Mountain Center, Hedgebrook, and Mesa Refuge; and inclusion in Best American Essays, Best American Science Writing, and Best Buddhist Writing. She is a past finalist for a National Magazine Award and the Dayton Literary Peace Prize.
Her books have been praised by many leading medical, spiritual, and literary figures, including Ira Byock MD, Barbara Ehrenreich, Anne Lamott, Adam Hochschild, Jack Kornfield, Joan Halifax, Sherwin Nuland, MD, Mary Pipher, and Abraham Verghese, MD.
"Knocking on Heaven’s Door," a New York Times bestseller, was named one of the ten best memoirs of the year by Publishers Weekly and was named an “Editors’ Choice," a "Best Book," or a "Notable Book of the Year" by the NYT, The SF Chronicle, the Boston Globe and other publications.
The book weaves a memoir of caring for her father during a long, difficult decline with an investigative history of medical innovation and a critical exploration of why medicine now focuses on warding off death rather than preparing people for peaceful ones. It was based on a groundbreaking NYT magazine article, "What Broke My Father's Heart: How a Pacemaker Wrecked a Family's Life," a "most emailed" NYT story for more than a month.
She is one of relatively few non-physicians to give “Grand Rounds” and endowed lectures at leading medical centers, including Harvard Medical School, Mt. Sinai, Cedars-Sinai, UCSF, the VA Medical Center in Minneapolis, and Kaiser-Permanente northern California. She has appeared on scores of public television and radio programs, such as Melissa Harris Perry's former program on MSNBC and on the Diane Rehm show. She has given keynotes before more than 100 community and professional groups and at leading bookstores across the country.
Her literary agent is Amanda (Binky) Urban of ICM Partners in Manhattan. Scribner, a division of Simon & Schuster, published her first two books.
Katy was born in Grahamstown, South Africa, was raised in Oxford, England. She came to the US as a child, settling with her family in the Boston area. (Her father Jeffrey was a Wesleyan University college professor and World War II veteran who lost his left arm in combat in Italy; her mother was a gifted amateur artist and homemaker.) She attended Sarah Lawrence college and obtained her BA from Wesleyan University in Middletown, Conn. Earlier in life, she lived in a mud hut in the Venezuelan rain forest and in two Buddhist monasteries and worked as a pizza waitress, a reporter for the San Francisco Chronicle (winning awards for her coverage, with Randy Shilts, of the AIDS crisis) an investigative reporter for an alternative newspaper, and a school crossing guard. For ten years, she wrote and edited for Psychotherapy Networker, contributing many 10,000-word articles of cultural criticism and therapeutic analysis to issues that won several National Magazine Awards and nominations.
Her writing has also appeared in Vogue, Salon, Utne Reader, Yoga Journal, MORE, Tricycle: the Buddhist Quarterly, and The Whole Earth Review and Catalog. A practicing Buddhist, she lives in the San Francisco Bay Area with her husband, professional musician Brian Donohue, who performs widely in local nursing homes, dementia units, and assisted living residences.
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I first encountered Butler's writing on the subject in a New York Times article in 2010 called "What Broke My Father's Heart." She laid out the multitude of personal and medical issues as her parents entered their 80s - a sudden health crisis of her father's that ultimately laid the groundwork for his years-long decline - stroke, heart disease, dementia, blood clots, brain hemorrhage. She explained how our current system more often than not intentionally draws out the process of dying. Medication, surgical interventions, technology - all of these things led to the shell of the man she knew as her father, simultaneously saving and dooming him. She also lovingly describes the impact his years-long dying had on her mother, who became a round-the-clock caregiver, bather, cook, cleaner and diaper changer.
What stood out most to me, what I took away from that article, is explained more fully in "Knocking on Heaven's Door." That for many, many of us, being forced to make a split second decision in a medical emergency will likely lead to a much longer path of disease, decline, and pain. Your mother has a heart attack? "If you don't agree to a breathing tube/feeding tube/CPR/pacemaker RIGHT NOW, she will die, and it will be because you LET her." Few of us are capable of knowing all what should be known to make truly informed decisions about and for our loved ones - we just know we don't want to let her die in front of us, before the rest of the family can be told there's a decision to make, much less have the chance to say goodbye.
And so I found myself nodding in recognition and understanding of what being part of this sorority of caregivers means. My family was in a similar spot. My mother had entered a hospital in May of 2008 to begin dialysis treatment for kidney disease, which had been treated to that point with medication. She did not return to her home until May of 2009. An endless list of crises emerged: A slip and fall in the hospital, compound fracture, infection, sepsis, endocarditis, MRSA, multiple temporary dialysis ports, cardiac arrest, three temporary pacemakers, one permanent pacemaker, atrophy, neglect, gangrene, amputation, three hospitals, and three skilled nursing facilities. Through the "wonders" of modern medicine, amazing strength on her part and dogged determination on our part, she finally returned home to her husband of nearly 50 years. Meanwhile, I racked up over $20,000 in airfare and expenses, flying back and forth between Hartford, Connecticut and Ft. Myers, Florida to handle the crises as they came. It was like a long distance game of Whack-a-Mole - you smack one down with a mallet, and another pops up over there. I used up all paid time off, and exhausted FMLA benefits. Ultimately, I put them on a plane to their native Michigan, sold their house in Florida, and joined them several months later, leaving a career and friends behind me on the east coast.
The thing about books like this, at least for an average layperson like me, is that I didn't even know they existed. I knew next to nothing about any of my mother's health issues, and even less about Medicare and its rules. Or how to navigate the system. Or how to advocate for a family member. Or the importance of a medical quarterback. I didn't know I needed that kind of information, certainly not in advance of the "iceberg, right ahead!"
But the initial article opened my eyes (mostly in horror) at what might further face us in the future. And why I was so glad to learn that the author was expanding on the article and working on a book. Butler's style of storytelling feels natural and warm. Her research into the professional health care field and the personal and societal costs are well-presented, and her conclusions are reasoned and imparted with empathy.
I hope those who need this book find it before they tumble into the rabbit hole of end-of-life care. Her article in 2010 allowed our family to talk about the pitfalls that may face us in the future, and how we would want to proceed if x, y or z happened with either parent. Her article came two years before my mother's death, and it brought both comfort and clarity when we had difficult decisions to make. If you're a daughter (or son), or you're a mother (or father), use this as an opportunity to open a conversation with your loved ones. It's just one more way to care for each other.
I have read extensively about end-of-life care since my own mother's death in march 2013 (at age 69). I love Ira Byock and Sherman Nuland's books especially. If you like these authors you will enjoy this book. In searching for answers to my mom's death (a 2 week stint in ICU and death 2 days after release while in hospice care at home) I have come to realize that she was blessed to be be at home and have such a brief period of dependency. My mom is the kind of person who shunned all medical care until it was an absolute must; she would have never wanted a respirator to keep her alive (she had COPD). She would have never wanted me to become her permanent caregiver (and said so several times.) I feel lucky that she was spared years of debilitation and nursing home care.
I myself have made a personal plan that I will not seek medical internvention at all once I surpass age 80. When I was younger I had that "longevity at all costs" mentality, but my experiences and my reading of other people's experiences has taught me a valuable lesson. You can definitely live too long.
Thank you for writing such a wonderful book Katy Butler. Your father would be so proud of you!
Top reviews from other countries
Katy Butler's book pulls no punches - she compares one parent who 'goes along' with medical intervention - leading to utter angst, followed by the second parent who chooses not to fight her death via medical intervention.
The sanctity of life goes all the way to our last breath - get your affairs in order earlier in life (say age 50ish), do a living will or advance directive, and get your kids on board!