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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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“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.” --Tony Miksanek --This text refers to an out of print or unavailable edition of this title.
“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." (Abraham Verghese New York Times Book Review)
“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)
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The inexorable advance in medical skills, nutrition, antibiotics, chemotherapeutics and overall technology has resulted in a significant boost to the overall health of society and its longevity; at the beginning of the 20th century life expectancy, on average, was 45 years compared to 78 years today. But a longer life is not necessarily a quality life. And that is where we fail as a society. We have become very adept at prolonging life no matter what, but what we are often really doing is protracting death. Over twenty percent of deaths in the USA happen in the critical/intensive care units "where 10 days of futile flailing can cost as much as $323,000", or to put it differently about 80% of medical expenses occur in the last 2 years of life in patients with debilitating chronic intractable conditions or incurable diseases. The USA is one of the few 'first world' countries where this extravagant waste continues to happen. Other countries, just as medically advanced as the USA, limit the use of expensive technologies to cases where there is a reasonable expectation of cure, many withold sophisticated procedures from the elderly suffering from chronic ailments, and a few have legislated physician-assisted suicides and euthanasia.
In my four decades career in Academic and private practice I have often dealt with end-of-life issues in my work as Director of a large Critical/Intensive Care unit (ICU) in a teaching institution and, later on, as a cancer surgeon. Until the advent and popularity of Hospice care, the only alternative to incurable, terminally ill patients was to die at the hospital or at home; the latter option was sometimes not feasible because of inadequate, unwilling or absent family support. Admission to the ICU was limited by a protocol of strict criteria. Non-salvageable patients were not admitted to ICU and remained on the general wards (for their supportive care). However, in the past two decades there has been a proliferation of ICU at most hospitals, separate units for neonates, children and even teen/adolescents; Adult Cardiac, general medical, burn, dialysis, trauma and surgical units, and "step-down" units. More sophisticated life-support equipment and testing technologies continue to become widely available. Beds have to be filled and criteria for admission to ICU are liberalized. Patients are admitted to hospital and/or ICU only by an order from a physician. Most physicians will heed the patient's and family's wishes as to the end-of-life management. Problems occur when the patient leaves no instructions or there is a discord within the family, when the patient is incapacitated. The physician has to make the decision and discuss the prognosis with the family. The ethical physician will educate the patient and family as to what is best for the patient and many doctors do just that. But unfortunately, some use any and every means to prolong the patient's vegetative existence prompted by ego (can't lose a patient), greed (gets paid for daily visits and procedures), sheer incompetence or fear of litigation (from discontented family). This often occurs even when the patient leaves specific instructions to limit extraordinary measures etc.
The reimbursement method in the health care industry is flawed and encourages the provision of excessive, often unnecessary medical care. Physicians and hospitals are payed to do procedures and perform tests. Every new technique or machine creates its own indications for use (market); to "someone with a new hammer everything needs to be pounded."
The answer lies in a "challenge-proof" health care will with specific end-of-life management instructions, which cannot be disputed or changed by anyone other than the patient; This should be based on an honest conversation with the primary physician, all care givers and family. Also, at any stage of a terminal condition, if an invasive test or procedure is proposed, it is best always to obtain a second opinion (or a even third) from a specialist in that particular field.
The primary physician should act as advocate and gatekeeper for the terminal patient, allowing only tests and/or procedures that would truly enhance the patient's well-being and comfort. He should stand up to consultants, hospital personel and even family members, if their conduct is not beneficial to his patient.
Unfortunately, few are willing to do that for fear of antagonizing their fellow physicians, with resulting loss of referrals and income.
Ultimately, in this country, we need to have a universally agreed-upon, comprehensive set of criteria to dispense end-of-life medical care; not based on financial benchmarks but on reasonable medical standards and targets. (I hear howls about "Rationing" and "Death Panels").
Everyone dies eventually. But, to die in a vegetative state to placate others, while kept alive by machines and artificial (often painful) means, bathed in one's own body fluids and excrement, is an ignominious death.
This terrific book should be required reading for all physicians and be included in the curriculum of all medical and nursing schools. It is a "must read" for all families with ailing or aging members.
The interested reader would find pertinent information on hospice care and end-of-life, in works by Dennis McCullough, MD about `Slow Medicine', Ira Byock, MD `The Best Care Possible', Sherwin Nuland, MD `How We Die' and Elizabeth Kubler-Ross, MD `On Death and Dying'.
Katy Butler's book is personal--for her and for me. She traces the steps many of us will follow as our parents, and in my case, a spouse, move from vigor to failing health, to death. I started reading for my students, but I soon was reading for me, staying up until dawn, crying and laughing as I recognized the universality of our common plight.
I have already seen many beautiful and accurate reviews of Knocking on Heaven's Door, so I will leave the particulars to those authors I have come to respect and love in the scientific, yet spiritual, field of medicine. Abraham Verghese (I loved his My Own Country long before his best seller, Cutting for Stone), Joan Halifax who writes beautifully about hospice, Sherwin Nuland, Jack Kornfield---their universal approval of this book will open this door to many, so I will only address its appeal to a person who has lost a father to liver cancer, a mother to Alzheimer's, a dear friend to cervical cancer, and a husband to Parkinson's in the last few years.
In this book, Katy Butler introduced me to a new term, Slow Medicine, what I see as the compassionate side of the passion/compassion duality of medicine. She recommends the next book on my bedside stack, which deals with Slow Medicine, My Mother, Your Mother, by Dennis McCullogh.
Butler's book is honest. She deals directly with the complicated relationships of mothers and daughters, the resentments of siblings, the interplay of family when family is now spread across the distances of space and time and responsibilities. Although I identified with her loss of her father, I also identified with her mother, watching her partner's mind slip away, his body kept alive by technology, and medication, even as I watched my own husband take hundreds of pills and drag around oxygen tanks as he talked to non-existent children in his study.
The ego of medicine is so strong, the often unrecognized need to play god and maintain the biology of life so embedded, that all our legal "right to die" and "do not resuscitate" papers we carefully sign and foist on grown children who do not want to think about such things, can be ignored when split second decisions must be made, often by exhausted ER docs, but also by specialists with the latest technological advances. Students are accepted to medical school based on academic ability, scientific knowledge, and clinical experience. Those attributes come first although, in all fairness, medical schools now also look at community service. If you understand the technology and biochemistry that will allow you to keep a patient alive, what is the incentive to follow their wishes and do nothing? If you have thousands of dollars of debt from medical school, do you want to risk a law suit when a patient dies who didn't have to?
All of us are touched by death. If we are fortunate, parents die before children, but the "what if's" and "I wish I had"s will probably always remain. Katy Butler's book is an important document in the Slow Medicine movement. If we as the families and friends pay attention, if we talk to our own children and physicians before decisions about our last days have to be made, if physicians can, without fear of lawsuits or condemnation, be led by compassion, measuring their own success by quality, and not just quantity of life, we can approach death a little more openly and easily.
Yes, I ultimately read this book for me, but I will strongly recommend it to my students, our future healers.