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Knocking on Heaven's Door: The Path to a Better Way of Death, by Katy Butler
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From Booklist
“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
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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."(Publisher's Weekly)
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Product details
Hardcover: 322 pages
Publisher: Scribner; 1 edition (September 10, 2013)
Language: English
ISBN-10: 1451641974
ISBN-13: 978-1451641974
Product Dimensions:
5.5 x 1.1 x 8.4 inches
Shipping Weight: 1.1 pounds (View shipping rates and policies)
Average Customer Review:
4.7 out of 5 stars
517 customer reviews
Amazon Best Sellers Rank:
#66,024 in Books (See Top 100 in Books)
Once in a while a book comes along that makes a significant impression on our way of life. Katy Butler has written such a book, based on and expanded from her original 2010 article (What Broke My Father's Heart) in the New York Times. In "Knocking at Heaven's Door", Ms. Butler exposes the often tragic end-of-life circumstances, caused by society's unrealistic expectations and/or religious beliefs as to the sanctity of life; prolong it at any cost (usually to the patient's & family's)! This is supported, and frequently encouraged, by the medical establishment out of incompetence, greed or fear of litigation. Other reviewers have given a good synopsis of the book from laymen's point of view; I shall add a perspective from someone who has been in the trenches.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'.
Spoiler alert: Medicare is imperfect and so is your physician. Those are just two of the takeaways from Katy Butler's "Knocking on Heaven's Door: The Path to a Better Way of Death." Butler whipstitches together a personal story of family, life and loss, with a troubling but informative assessment of current medical practices and American cultural norms that surround end-of-life issues.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.
While I give it 5 stars the words hover "I LOVE IT" aren't exactly my sentiments. "I AM SMARTER NOW" would be more appropriate. I have worked in healthcare (cardiac intensive care) and IT (software) for several years. I think Ms Butler did an good job in research and balanced with her experiences as a daughter. My dad didn't have a pacemaker, but phsyciians quickly suggested another Medtronic stimulator for $90K which we only paid $250 for. I wish I read this book before that. Too often in our "fee for service" we are not leading with therapy, bio-feedback, counseling, activity, etc. In all my years cardiac nursing, I never considered what the long term effects of pacemakers. We fix problems acutely, but what are we setting up for the families long term? Never heard that as part of a cardiologists discussion with informed consent. As a history buff, I enjoyed the history of electro-therapy too. That was a bonus for me.
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