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Rachel S. Houseman

A must-read for every family

Reviewed in the United States on September 10, 2013

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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.

MacMurdoch

You are going to die ... but how?

Reviewed in the United States on November 20, 2013

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You are going to die, and so am I: Our human mortality rate is 100 percent. 100 percent! So why trot out this unpleasant thought? Well, perhaps it is useful to think about death and dying? In our rush to be successful and buy things and be non-stop entertained we hardly ever think about death, and never for long. We never think that before we die we may become paralyzed, need our diapers changed, be unable to speak or write, forget where or who we are, and fail to recognize people we have loved all our lives. And worst of all, we never think that we might someday become helplessly dependent on others for care, less like squalling babies than like the living dead. Babies have a future; those camped on death’s doorstep don’t. There’s one really disturbing scene we duck by not imagining it: How will our death happen? Will it be in an I.C.U. with it’s beeping machines, pumps, and glowing dials, we laying there barely conscious with tubes stuffed down our throats and into our noses, and where, as our dying spirit seeps slowly into the great swamp of nothingness and blackness – whence we came, by the way – our well-meaning and highly-trained medical emergency team frantically shocks our octogenarian body back to life with the latest titanium device or pumps us full with the latest miracle biotech medicine at the astronomical cost of tens of thousands of dollars a day? Or do we, perhaps, die at home surrounded by loved ones, in comforting surroundings, at peace, having accepted the idea days, weeks or even months before, after a sigh, that our death is inevitable and that it is a far better thing to accept than to fight? Maybe, in our acceptance, we refuse a medical procedure that offers a slim hope for real benefit and which may carry unmentioned and unintended consequences. You may embrace either scene of death – fighting valiantly to the last breath, or peacefully accepting that your time has come – but it’s more likely you don’t know you have a choice. You can indeed choose, but it’s not easy and you will have to fight off powerful forces that shame you or condemn you for accepting a natural death. Katy Butler’s book builds on the compelling story of the deaths of her parents. She first describes how her father’s life came to be prolonged by a pacemaker her family didn’t want in the first place. She and her mother could later never get it turned off as the years passed and the poor man’s quality of life progressed from bad to awful. Exhausting years of caring for him by Katy’s mother turned the poor woman’s life into a kind of hell – her 80’s years were anything but golden. The burden of care giving and worry also fell on Katy, the one sibling who spent time, energy, and money to help her parents despite living on the opposite coast and hoping to have a life of her own. Read her story, it’s gripping, showcasing the spiritual agony (there is no ecstasy) experienced these days by millions of women caregivers – nearly all caregivers are women. The book indicts our system of medical care, which fights to save lives while damning the torpedoes of cost and all too frequently ignoring the true and dire consequences of its own success – saving lives but creating care-demanding living human wrecks. It indicts our system of financing medical care and the millions who profit from it. It indicts us, who in our old age are helpless to resist the often forlorn hope offered by more and more medical interventions because we stupidly think that living longer is better than dying naturally even when life has lost meaning. Anyone who is growing old, and anyone who will one day give care to aging loved ones, should read this eloquent book.

Deb Wellinghoff

Life altering book; helpful for anyone facing dementia

Reviewed in the United States on December 4, 2019

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I am writing to say thank you for sharing so much of the intimacy of your life journey with your parents in "Knocking On Heavens Door". For the last several years I have found myself living a strange life knowing there was something seriously wrong with my husband. We have been married for longer than half my life on this earth and many times I considered walking away because he was truly morphing into a stranger. In my heart and soul I knew there was something physically or mentally going awry. It was a long and painful journey to the diagnosis of Alzheimer's which came along with the suspicion there is probably some other form of dementia as well. Next month he will be 76 and I 63.

Our dementia journey is just beginning and I am still very resistant. Instead of reading your book I listened to you read it as I am so tired I had difficulty sticking with the written word. In retrospect, the hard copy of the book has been on my nightstand for almost a year, it was more meaningful for me to listen to your voice sharing your story. Some of it was brutal for me to hear, I cried often as I got to know you, Jeff, and Val. There were passages you read from your mother's journal, conversations you had with her, that were chilling for me to hear as her words/thoughts could have been mine.

I am figuring many things out and know that my husband and I want to take a palliative approach. There is very little that I feel confident about other than this has already changed me in ways I do not yet comprehend. For now I feel as though I have already stopped living and merely exist from one day to the next; I am actively working on 'self' hoping his disease does not consume me along the way. Your book has had a huge impact upon me, you have my gratitude.

Sagecat

... has done an admirable job of describing what it's like to have the patterns of a family's routines and ...

Reviewed in the United States on August 3, 2014

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The author has done an admirable job of describing what it's like to have the patterns of a family's routines and relationships drastically altered when one of them develops dementia. When Butler's parents on the east coast, required increasing help and intervention, the life of their daughter, who lived on the west coast, changed quickly and dramatically. Butler relates this story factually, including her laments of the lack of support from her male siblings (although they did contribute in their own ways, eventually). The story is woven with reflections back to her father's younger days, helping us to understand the person he was, and the frustration he must have experienced as he succumbed to the loss of himself. Butler's parents, even as they aged, had been very independent and self-reliant, devoted to each other. Her mother's battle with cancer prior to the entry of dementia into their lives, had been their greatest challenge, according to the author.

Though I very much enjoyed Butler's sharing of personal details of her family's journey through dementia, the book may have suffered by a bit too much of these peripheral details, The pages devoted to her and her mother's visits to the Zen center in California contributed nothing to me. It was clear from several other references, that Buddhism played a large part in their lives without that additional information. What I think many readers will find helpful is the information at the the end of the book listing resources of all kinds in dealing with dementia. I read this book nearly two years after my journey through dementia with a family member had ended, and I'm sure that it would have been very helpful to have had it at the outset of that experience. Anyone taking on the care of a loved with dementia, intent on keeping them in their own home as long as possible, would benefit from this book and I would recommend it highly. Though the authors' navel-gazing was a bit much at times, there is plenty of other useful and insightful material to offset that.

A. McCLure

A phenomenal book by a gifted writer

Reviewed in the United States on September 12, 2013

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"Knocking on Heaven's Door" should be required reading for all adults, partiuclarly medical professionals. This story of what could easily be mundane and boring is positively riveting. I received the book yesterday and have read it constantly since then here and there where I can steal a moment from my children and work. I'm not even finished yet (p. 203). Butler's ability to make a dry subject so fascinating (i.e. medical device history and sales) is incredible. The added bonus is that throughout she interweaves gut-wrenching emotions between herself, her mother, her brothers and her father. She is so honest and real in her writing. If you have ever expereinced the death of a loved one you probably felt guilt and shame at the negative thoughts that may have passed through your mind. Butler's work is very reassuring in knowing that your thoughts were normal.

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!

Janis Deets Nowak

Best book of 2013: A Must Read!

Reviewed in the United States on December 30, 2013

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Do you have aging parents? Are you aging? Do you care for people who are aging? Katy Butler’s “Knocking on Heaven’s Door: The Path to a Better Way of Death” is a must read! This memoir, which covers a grueling, eight-year caregiving journey, had me laughing, crying, and totally engaged. It is the best book of 2013!

Katy Butler’s father suffered a stroke in 2001 which left him disabled but able to function in a limited capacity. After rehabilitation, he returned to his Connecticut home and his wife of many years. Katy’s long-distance caregiving relationship began as she stayed involved in her parents’ lives from her home in California and frequent trips across the country. As Katy’s father’s condition declined, her mom’s caregiving journey was more “in-your-face”. She was frustrated, overwhelmed and suffered depression as she watched her self-reliant husband disappear. Katy’s story covers the complicated relationship between parents and children, the current state of medical care for those in the last years of their lives, a bit of Zen Buddhism, and the art of dying. Her tale is both beautifully written and educational. You will experience the heart-break and be up-lifted by the love in the Butler family story.

Every American over the age of forty must read this book. Often material this important won’t hold your interest. But Ms. Butler is able to weave the personal and the informational aspects so expertly you won’t be able to put the story down. You will learn how to talk with a dying person. You will learn questions to ask your doctor. You will learn about the last phases of life and notes on how to shepherd a parent, spouse or friend through those phases. Truly - this is the most important book released in 2013. You must get a copy, read it and pass it on! In Katy Butler’s own words: “That way, when the time comes to say “Good-bye”, you are ready.”

Amazon Customer

It's not nice to fool Mother Nature

Reviewed in the United States on July 27, 2015

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I've read horror stories by famous authors that were described as "terrifying", "chilling", and "leaves you shaking -- don't turn off the lights". But nothing was as gawdawful frightening as Knocking on Heaven's Door. This book literally gave me nightmares. My husband and I are boomers and are facing old age in the near future. After reading about Katy and her family's experiences with well-meaning (?) high-tech medical interventions performed on elderly patients, we're seriously considering self-deliverance -- euthanasia -- before a stroke or heart attack forces us into the hands of medical professionals more interested in how long they can make us live than the quality of our lives.
I've always known Big Pharma was focused on maximizing profits, but the chilling statistics on implants performed on the elderly came as a shock. Couple that with high-pressure sales pitches by cardiac surgeons in love with the bonuses from pacemaker manufacturers and the frantic, impersonal assembly-line pace of emergency rooms and intensive care units, and Stephen King himself couldn't write a more horrific tale of torture performed on the helpless.
500 years ago, the Inquisition brought unbelieveable suffering to innocent people in order to "save their souls." Today, similar pain and fear are part of American health care's rush to squeeze one last breath from worn-out bodies and failing brains. Death is as much a part of life as birth, a fact our culture prefers to ignore until the last minute. That refusal to acknowledge the inevitable is now resulting in excessive physical, emotional and financial suffering for patients and their families while enriching medical product manufacturers and the specialized surgeons who profit from "playing god". There is a harsh penalty for denying the reality of a failing body and mind; tragically, our most vulnerable citizens are paying the price.

Rural ID.nurse

Heathcare vs. Dying

Reviewed in the United States on July 24, 2018

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This is a heartfelt book and likely raised many emotions in the author when writing it. It is always difficult to go back into an intense experience and revisit how one felt at various points along the way and the author does a great job. The book clearly spells out the dangers of modern healthcare vs dying. Being a retired RN with countless years of ICU work, I know what this author's father went through is the norm and not the exception (although he was lucky in being able to spend almost all his time at home when most people don't get that luxury). My experiences have scared me so that I have all my end of life paperwork in order and clear instructions to not be admitted ever to a hospital or ER let alone a nursing home or "rehab" center. This means I have had to go above and beyond the standard Advanced Directives and Durable Power of Medical Attorney forms. In reading this book, you will see why less is more. Also suggested to read is "A Better Way of Dying" by Dr. Jeanne Fitzpatrick and Eileen Fitzpatrick, Esq. What I did not care for in this book was the interruption of her family's story with the well researched information on various related side topics. While very relevant to the story, I found them disruptive although no clear better way to provide this information is immediately available.

Karin Patzke

Slow Medicine

Reviewed in the United States on May 8, 2022

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The author makes an eloquent case for a graceful path to death as opposed to the panicked trip to the hospital that often precedes dying in the hurried, impersonal atmosphere of intensive care medicine. She does not look for rationed medical care, “death panels”, or withheld care but rather care that’s informed by all possible side effects and metered according to quality of life, rather than quantity.

Andy Orrock

Katy Butler's brilliant book is the most important work I've read in the past decade

Reviewed in the United States on February 8, 2014

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There's little I can say here that hasn't been said well and pointedly on these pages by my fellow reviewers: Katy Butler's brilliant book is the most important work I've read in the past decade. It succeeds on so many levels, most notably as an exquisitely detailed tale of the personal tragedy that unfolded in her family and as a clarion call to the legions of us with aging parents to not let the same thing befall us. Indeed, my immediate reaction was to urge all my family members (and my wife's family members) to read it and heed its lessons. More than any book in recent memory, this is the one you'll press into people's hands. It's the one where you'll realize you just spent 10 minutes raving to someone about it.

Katy Butler has become The Voice - our voice - on this most important of issues. As our life expectancies increase and technology - while on the whole for the good - have the perverse ability to retard end-of-life quality and remove "the good death" from our lexicon, it's this book that crystallizes what we lose when we think we've gained.

My one quibble: the book's title, which would seemingly put it in the same ilk as Heaven is for Real: A Little Boy's Astounding Story of His Trip to Heaven and Back and Proof of Heaven: A Neurosurgeon's Journey into the Afterlife . While undoubtedly a work infused with a spiritual sensibility, Butler's book is all about the realities of the here and now, not the afterlife.

CD Hays

A life safer.

Reviewed in the United States on October 8, 2013

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I had just returned home from visiting my 90 year old mother in the nursing home when I read a review of this book. My mother had a number of physical problems and was blind and bedridden. She had become completely dependent on others in every way. Recently, she began to refuse food completely. I had asked her repeatedly about a feeding tube and each time, she adamantly rejected the procedure.

When I got back to my house that afternoon, I was doubting myself for not asking for the feeding tube for her. It's one thing to know that this is what your mother wants and it is another to actually watch someone you love and care for to die from starvation.

I ordered the book on my Kindle and read it through immediately. It was exactly what I needed at exactly the right moment. The book helped me to realize that I was doing the right and selfless thing for her, by letting her decide how and when she was to die. I still feel pain as I watch her body shrink and wither but my pain is not the issue.

The writer's own personal journey helped me to know that she understood what I was going through. I also appreciated that the book was written without an overtly religious viewpoint. There are plenty of faith based books on the market to soothe our souls. What I needed at that moment was exactly what she provided, a detailed and thorough examination of the issue itself.

Kisses The Earth

There is more to live than longevity. Death is not the enemy - loss of self is.

Reviewed in the United States on September 17, 2014

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This is the first time I have read of someone feeling and SAYING how they feel about losing a loved one to dementia. It has been part of my healing. My father was very concerned about dementia as both his parents had it late in life. He knew about 10 years ago that his brain was not working correctly and was given standard baseline cognitive tests by his Internist. Although he was experiencing intermittent cognitive issues, he tested well on everything except short term memory for the next 8 years. I finally found a Geriatric Nurse Practitioner who gave my dad his first comprehensive assessment. The diagnosis was Lewy Body Dementia which has elements that mimic both Parkinson's and Alzheimer's. He got a brief benefit from Aricept, but things progressed. When he could no longer be managed in his apartment he was moved to a nursing floor. He decided to refuse food and water in order to hasten his death. He was still very much himself most of the time. But he knew what was coming and did not want it for himself or for us. He passed peacefully and as he wanted within several weeks. All praise to Hospice who supported his wishes and helped us support him. I did not want to lose my dad, but I was going to, and this was as good as it could have been. My your journey also be supported and no longer than necessary.

Frank L. Urbano

A Tour De Force About Death, Dying and the Meaning of Life

Reviewed in the United States on November 19, 2016

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"Knocking on Heaven's Door" is one of the best books I have read in a long time. It nicely mingles commentary on current medical technology; our cultural approach to dying in America; the challenges of growing old; and struggles with family discord. At its heart, the book is about how the author's father received a pacemaker after a stroke, and eventually declined to the point when he died several years later. The author vividly describes her feelings regarding the journey her father and mother took until their deaths.

The reason the book is so good is because of the commentary it makes and the ideas is broaches about our cultural approach to medical care in America. Questions about how much care is too much and when stopping medical interventions is appropriate are posed throughout the book. The struggle the author and her family undergo during this process is heartbreaking and agonizing. The author also comments on the influence of monetary rewards upon the prescription of care by physicians, implying that some of the motivations to treat patients is related to the money they will make. While this may not be a fair indictment of most physicians, it does make you think about the care that physicians recommend.

This one is a page-turner. I couldn't put it down. I would highly recommend it.

N. Shea

A brilliant, heartfelt approach

Reviewed in the United States on September 30, 2013

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I first read the other reviews and feel like everyone said something I, too, felt....being in a very similar situation/family dynamic as Katy (except I am an only child), this book's value simply cannot be overestimated. Her honesty about difficult emotions is crucial and instructive, as well as heart-wrenching. My own Mother died so fast I couldn't get there in time; Hospice was only called in by her Dr. 48 hours before she died. Although it is a hard call as to "when" someone will die, in her case I would have made the call weeks before and at least made an attempt to communicate with the family. The disconnect within the various aspects of the medical INDUSTRY is appalling and breaks hearts daily. The folks at the funeral home were more sensitive and kind and allowed my daughter and I time with my Mother's body in the most respectful manner, and that was a gift. I do feel this book is among a handful of helpful books on the subject of aging and dying; the sooner we all face and learn about this, the more chance our parents and we "children" ourselves will have of navigating what is admittedly a painful journey. I have nothing but gratitude and deep appreciation for Katy's transparency and labor of love in writing this book. Her kindness shows. And the things she may have left out? Best to do so. We all do the best we can and this book will help us learn to approach aging, illness and dying with a more open heart and mind.

E. Comella

Encourages readers to educate themselves and take responsibility for end of life decisions

Reviewed in the United States on December 22, 2013

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Having worked in emergency medicine I was interested in learning more about a layman's view of end of life medical care. Family members can have a difficult time letting go. I have been called to homes where the patient was on hospice care and yet a family member panicked and called 911 anyway. EMS has no choice but to respond. I think that the most important point that the author makes is that the family needs to educate itself in order to make the most informed decisions in the best interest of their loved one and that end of life wishes need to be discussed while the loved one is still competent. I tired of the author's vacillating between loving and hating her parents and I certainly could have done without her search for meaning. She came across as a bit whiny to me. I do agree with her though that there may come a time when the best thing to do is to just make your loved one comfortable and gather around to say good-bye in the comfort of your home. Find a physician who shares your wish that the patient die with dignity and as much comfort as possible, but once you introduce the patient into an emergency medical and/or hospital situation realize that legal liability will dictate that all possible measures be taken. It is not fair to become angry with the medical staff.