What do you think?
Rate this book
Knocking on Heaven's Door: The Path to a Better Way of Death
Knocking on Heaven's Door is a visionary map through the labyrinth of a broken and morally adrift medical system. It will inspire the necessary and difficult conversations we all need to have with loved ones as it illuminates a path to a better way of death.
Like so many of us, award-winning writer Katy Butler always assumed her aging parents would experience healthy, active retirements before dying peacefully at home. Then her father suffered a stroke that left him incapable of easily finishing a sentence or showering without assistance. Her mother was thrust into full-time caregiving, and Katy became one of the 24 million Americans who help care for aging parents. In an effort to correct a minor and non–life threatening heart arrhythmia, doctors outfitted her father with a pacemaker. The device kept his heart beating but did nothing to prevent his slide into dementia, incontinence, near-muteness, and misery. After several years, he asked his wife for help, telling her, "I am living too long."
Mother and daughter faced a series of wrenching moral questions: When does death cease being a curse and become a blessing? Where is the line between saving life and prolonging a dying? When is the right time to say to a doctor, "Let my loved one go"?
When doctors refused to disable the pacemaker, sentencing her father to a protracted and agonizing death, Katy set out to understand why. Her quest had barely begun when her mother faced her own illness, rebelled against her doctors, refused open-heart surgery, and instead met death head-on. Knocking on Heaven's Door, a revolutionary blend of memoir and investigative reporting, is the fruit of the Butler family's journey.
With a reporter's skill, a poet's eye, and a daughter's love, Butler explores what happens when our terror of death collides with the technological imperatives of modern medicine. Her provocative thesis is that advanced medicine, in its single-minded pursuit of maximum longevity, often creates more suffering than it prevents. Butler lays bare the tangled web of technology, medicine, and commerce that modern dying has become and chronicles the rise of Slow Medicine - a growing movement that promotes care over cure.
Knocking on Heaven's Door is a visionary map through the labyrinth of a broken and morally adrift medical system. It will inspire the necessary and difficult conversations we all need to have with loved ones as it illuminates a path to a better way of death.
Like so many of us, award-winning writer Katy Butler always assumed her aging parents would experience healthy, active retirements before dying peacefully at home. Then her father suffered a stroke that left him incapable of easily finishing a sentence or showering without assistance. Her mother was thrust into full-time caregiving, and Katy became one of the 24 million Americans who help care for aging parents. In an effort to correct a minor and non–life threatening heart arrhythmia, doctors outfitted her father with a pacemaker. The device kept his heart beating but did nothing to prevent his slide into dementia, incontinence, near-muteness, and misery. After several years, he asked his wife for help, telling her, "I am living too long."
Mother and daughter faced a series of wrenching moral questions: When does death cease being a curse and become a blessing? Where is the line between saving life and prolonging a dying? When is the right time to say to a doctor, "Let my loved one go"?
When doctors refused to disable the pacemaker, sentencing her father to a protracted and agonizing death, Katy set out to understand why. Her quest had barely begun when her mother faced her own illness, rebelled against her doctors, refused open-heart surgery, and instead met death head-on. Knocking on Heaven's Door, a revolutionary blend of memoir and investigative reporting, is the fruit of the Butler family's journey.
With a reporter's skill, a poet's eye, and a daughter's love, Butler explores what happens when our terror of death collides with the technological imperatives of modern medicine. Her provocative thesis is that advanced medicine, in its single-minded pursuit of maximum longevity, often creates more suffering than it prevents. Butler lays bare the tangled web of technology, medicine, and commerce that modern dying has become and chronicles the rise of Slow Medicine - a growing movement that promotes care over cure.
Knocking on Heaven's Door is a visionary map through the labyrinth of a broken and morally adrift medical system. It will inspire the necessary and difficult conversations we all need to have with loved ones as it illuminates a path to a better way of death.
322 pages, Hardcover
First published January 1, 2013
183 people are currently reading
10706 people want to read
Ratings & Reviews
Friends & Following
Create a free account to discover what your friends think of this book!
Community Reviews
Displaying 1 - 30 of 532 reviews
November 30, 2017
A summary of this book would say that the author felt that a natural death should be accepted. Less hospitalisation, less CPR, less prolonging of life where even though there was still quality it wasn't how it had been and would deteriorate and less drugs with consequently more pain and inconvenience although obviously for a shorter time. That pain was concommitant with the ending of life by disease and to some extent should be accepted.
I'm reading Counting Backwards: A Doctor's Notes on Anesthesia right now. His major focus is of total pain relief with special regard to those that cannot advocate for themselves and might be suffering unnecessarily. I'm right behind him.
I understand the author's point of view that, perhaps especially in the US, death has become over-medicalised because it is commercial, the last chance to make money from a person, the end of life as an opportunity to squeeze the body dry of dollars, whether it be bank account or insurance company. (After that the Funeral Directors will try and get their hands on any inheritance and bleed the living). Both play on the emotions of the family of the person who is about to die or just died. I despise them too, but there is such a thing as overdoing it, and I believe that's the path the author has taken.
An interesting read, but repetitive and one that seeks to persuade rather than explain. Better than a 3, but definitely nowhere near a 4, so rounded down.
I'm reading Counting Backwards: A Doctor's Notes on Anesthesia right now. His major focus is of total pain relief with special regard to those that cannot advocate for themselves and might be suffering unnecessarily. I'm right behind him.
I understand the author's point of view that, perhaps especially in the US, death has become over-medicalised because it is commercial, the last chance to make money from a person, the end of life as an opportunity to squeeze the body dry of dollars, whether it be bank account or insurance company. (After that the Funeral Directors will try and get their hands on any inheritance and bleed the living). Both play on the emotions of the family of the person who is about to die or just died. I despise them too, but there is such a thing as overdoing it, and I believe that's the path the author has taken.
An interesting read, but repetitive and one that seeks to persuade rather than explain. Better than a 3, but definitely nowhere near a 4, so rounded down.
April 5, 2013
Based on her award winning New York Times Magazine article ‘What Broke My Father’s Heart’ (which still can be found via online search), Katy Butler has written a powerful medical memoir. I have read the pre-release e-version and wish the book could be released sooner than September as I would run out and buy copies to send to my siblings as we are currently facing some medical decisions to be made on behalf of our elderly parents who have major medical problems.
The author concentrates on the final years of her parents’ lives, bringing together the personal, emotional side with the medical labrynth/greed side of eldercare. She has done exhaustive research and shares staggering statistics. We have the most advanced medical system on earth but in the end, it succeeds mainly in prolonging suffering. Nobody wants to die plugged into machines but a fifth of American deaths now take place in intensive care. Hospitals make efforts, no matter how futile, to prolong life –it is a money game. The author delves into the workings of law, morality, interference and financial incentives of a medical system that encourages over-treatment.
A pacemaker inserted in the author’s father would come to be one of the worst decisions to have made. His heart well outlived his mind and his failing body. The family’s wishes to have this loved man die a dignified death are ignored. The story is heartbreaking and not only broaches the subject of a patient’s quality of life but also the life of the caregiver and the ‘street saints’ (estimated currently at 2 ½ million in the U.S.) who come in to help - providing companionship and indispensable relief for caregivers, for very little pay in a culture that is willing to shell out millions for high tech cures but little for companionship and quality of life/comfort.
This memoir is one that everyone should read as more and more of us will be faced with caring for loved ones as they approach death. It has forever changed the way I think about life and prolonging it.
The author concentrates on the final years of her parents’ lives, bringing together the personal, emotional side with the medical labrynth/greed side of eldercare. She has done exhaustive research and shares staggering statistics. We have the most advanced medical system on earth but in the end, it succeeds mainly in prolonging suffering. Nobody wants to die plugged into machines but a fifth of American deaths now take place in intensive care. Hospitals make efforts, no matter how futile, to prolong life –it is a money game. The author delves into the workings of law, morality, interference and financial incentives of a medical system that encourages over-treatment.
A pacemaker inserted in the author’s father would come to be one of the worst decisions to have made. His heart well outlived his mind and his failing body. The family’s wishes to have this loved man die a dignified death are ignored. The story is heartbreaking and not only broaches the subject of a patient’s quality of life but also the life of the caregiver and the ‘street saints’ (estimated currently at 2 ½ million in the U.S.) who come in to help - providing companionship and indispensable relief for caregivers, for very little pay in a culture that is willing to shell out millions for high tech cures but little for companionship and quality of life/comfort.
This memoir is one that everyone should read as more and more of us will be faced with caring for loved ones as they approach death. It has forever changed the way I think about life and prolonging it.
January 10, 2015
This is combination memoir, investigative journalism, and self-help.
Its main thrust is permission to stand down.
The author's father had already had a stroke and begun his final decline when he got a pacemaker so as to be able to withstand a hernia operation. Then the pacemaker kept him going while he became progressively more demented and dependent, and while caring for him drained her mother and arguably shortened her life. The author explores the economic incentives and legal and emotional issues that trapped her father and family. She brings the reader along on the journey, so sometimes I was crying while I read.
As soon as I found out about this book I wanted to read it. In the prior decade I took care of my parents during their final years, after they suddenly went from independent adulthood to dependence. It wasn't hands-on care in my case but all the decisions and moves, dealing with the medical establishment, eventually with their moving and closing down their home, and their finances, too, with which my husband blessedly helped. (Years earlier I had agreed in an embarrassed sort of way to be their executors while having no realistic idea what that would mean.) At first it seemed like just an initial crisis, once my mother, whom we had all thought would care for my father, went down first, but once the train got moving it chugged along for a decade, picking up speed.
Especially in my father's case, I just acceded to what the doctors said. It sounds stupid, but I really didn't see alternatives. So he had a lot of medical treatment--what this book would call overtreatment--for a condition that was not going to be cured. In retrospect he could have had a much more peaceful final three years with palliative care instead. Of course, even if I had known all that at the time I still would have had to talk with him and his doctors to ascertain what he wanted. But the fact is I really didn't believe my parents were going to die.
Most of us no longer live in extended families or close-knit towns we grew up in so we don't have the experience of seeing older relatives or friends at the end of life, or at least I didn't. I had only seen my father-in-law, and my parents didn't look anything like he did, adding to my illusion. And the medical establishment didn't help.
So the big value of reading this book was for my husband and me. We've already begun to talk to our children.
As I said at the beginning about "permission to stand down," I think the main value of the book is getting prepared. It's not enough to have the ordinary paperwork signed and the expressed wish against "extraordinary measures;" both her parents and mine had that. Beyond that, it's thinking that at some point one may decide not to have some device implanted or recommended surgery or investigative procedure that would imply treatment. It's being prepared to ask questions and, perhaps, decline.
I feel myself at an interim point now, not "that old." But would one always see oneself at that point? As part of the local newspaper's current series on the problem of rural hospitals shutting their doors, I read this morning of a 79-year-old woman who said she wouldn't be alive today if the hospital hadn't been there for her two years ago when she had a heart attack. They didn't have to revive her but she did have a bypass, and now continues to run a bed-and-breakfast with a friend, according to the article, at least.
We always used to hear how much better the American system of medicine is, how "socialized" medicine killed somebody's loved one, and how people from Canada and Europe came to the US for treatment they couldn't get at home. And, of course, the political cry of "death panels!" Finally the other side of the picture is emerging, with books like this and lots of articles and people daring to speak these truths.
Here's the Ezekiel Emanuel article that came out while Knocking on Heaven's Door was still waiting on my To Be Read list. http://www.theatlantic.com/features/a...
Here's the NYT review of Atal Gawande's Being Mortal. http://nyti.ms/1sb9pPR
Here's an article that argues physicians know all this and make their own plans accordingly. http://www.wsj.com/articles/SB1000142...
And here's the original article that became the basis of Knocking on Heaven's Door. http://www.nytimes.com/2010/06/20/mag...
Its main thrust is permission to stand down.
The author's father had already had a stroke and begun his final decline when he got a pacemaker so as to be able to withstand a hernia operation. Then the pacemaker kept him going while he became progressively more demented and dependent, and while caring for him drained her mother and arguably shortened her life. The author explores the economic incentives and legal and emotional issues that trapped her father and family. She brings the reader along on the journey, so sometimes I was crying while I read.
As soon as I found out about this book I wanted to read it. In the prior decade I took care of my parents during their final years, after they suddenly went from independent adulthood to dependence. It wasn't hands-on care in my case but all the decisions and moves, dealing with the medical establishment, eventually with their moving and closing down their home, and their finances, too, with which my husband blessedly helped. (Years earlier I had agreed in an embarrassed sort of way to be their executors while having no realistic idea what that would mean.) At first it seemed like just an initial crisis, once my mother, whom we had all thought would care for my father, went down first, but once the train got moving it chugged along for a decade, picking up speed.
Especially in my father's case, I just acceded to what the doctors said. It sounds stupid, but I really didn't see alternatives. So he had a lot of medical treatment--what this book would call overtreatment--for a condition that was not going to be cured. In retrospect he could have had a much more peaceful final three years with palliative care instead. Of course, even if I had known all that at the time I still would have had to talk with him and his doctors to ascertain what he wanted. But the fact is I really didn't believe my parents were going to die.
Most of us no longer live in extended families or close-knit towns we grew up in so we don't have the experience of seeing older relatives or friends at the end of life, or at least I didn't. I had only seen my father-in-law, and my parents didn't look anything like he did, adding to my illusion. And the medical establishment didn't help.
So the big value of reading this book was for my husband and me. We've already begun to talk to our children.
As I said at the beginning about "permission to stand down," I think the main value of the book is getting prepared. It's not enough to have the ordinary paperwork signed and the expressed wish against "extraordinary measures;" both her parents and mine had that. Beyond that, it's thinking that at some point one may decide not to have some device implanted or recommended surgery or investigative procedure that would imply treatment. It's being prepared to ask questions and, perhaps, decline.
I feel myself at an interim point now, not "that old." But would one always see oneself at that point? As part of the local newspaper's current series on the problem of rural hospitals shutting their doors, I read this morning of a 79-year-old woman who said she wouldn't be alive today if the hospital hadn't been there for her two years ago when she had a heart attack. They didn't have to revive her but she did have a bypass, and now continues to run a bed-and-breakfast with a friend, according to the article, at least.
We always used to hear how much better the American system of medicine is, how "socialized" medicine killed somebody's loved one, and how people from Canada and Europe came to the US for treatment they couldn't get at home. And, of course, the political cry of "death panels!" Finally the other side of the picture is emerging, with books like this and lots of articles and people daring to speak these truths.
Here's the Ezekiel Emanuel article that came out while Knocking on Heaven's Door was still waiting on my To Be Read list. http://www.theatlantic.com/features/a...
Here's the NYT review of Atal Gawande's Being Mortal. http://nyti.ms/1sb9pPR
Here's an article that argues physicians know all this and make their own plans accordingly. http://www.wsj.com/articles/SB1000142...
And here's the original article that became the basis of Knocking on Heaven's Door. http://www.nytimes.com/2010/06/20/mag...
September 8, 2013
I spent 3+ years a decade and a half ago taking care of my dying mother. I wasn't sure I wanted to read this book--it was a difficult time that I'm generally happy to keep in the closet. However, I took the plunge into Katy Butler's book, and found out that what I felt and went through was not unique and it was wonderful to hear echoes of what I experienced in her story. She is very open with her feelings, and her frustrations, with her family, the tremendously mysterious and maddening medical army you must take on in the process of helping someone in decline and death (though Butler finds ways around it as time goes by), and the modern version of dying that has taken all the sacred away and piled up too many procedures, patches, and invasive entrances to our bodies and our lives. Butler, a Buddhist, believes that things can be different, and she shows us what is so wrong, and what can be righted, if we are willing to stand up for a better death. This is a book that most people need to read, for their family and for themselves.
September 5, 2013
If you have parents, you need to read this book. Part memoir, part investigative journalism, Knocking On Heaven's Door by Katy Butler is a gorgeous and essential book. In brief, Butler writes about caring for our parents as they age. The truth is that, as modern medicine enables people to live longer and longer, often with poorer and poorer quality of life, the disproportionate burden of caretaking falls on daughters. This is caretaking for those who have fallen through the cracks, neither so ill they receive treatment, but not quite ill enough to die, parents living in a limbo created by modern medicine, not family love.
In Butler's case, her father had a pacemaker installed just about the time that he probably would have gracefully begun to decline into senility and death. Instead, the pacemaker kept him alive, year after year, wearing his wife and daughter out despite their love for him. And here's what makes the books so great. While Butler does an excellent job as a journalist detailing the rise of modern medicine along with nifty devices like pacemakers and the problems they bring, she also describes her personal journey of love for her parents. She's totally honest. While she loves and admires them, they were clearly not easy parents on their children. Butler's brothers barely come to visit. Butler herself often ends visits by catching an early flight. Butler does not sugarcoat anything. Most of us have complicated relationships with our parents. Butler reminds us that we will have to deal with this even as our parents die.
In many ways, Butler's book reminds me of my own. Both of us blend our personal experiences with letting someone die along with the state of modern medicine. Both of us obviously believe that what makes the difference is paying enough attention to this final act in life that we can go through it with grace. Even being similar, Butler's book gave me something new. Halfway through the book, she describes her father in his dementia as if he were Tintern Abbey, the ruin described so beautifully by Wordsworth. She writes, "Never would I wish upon my father the misery of his final years. But he was sacred in his ruin, and I took from it the shards that will sustain me." Though we may resist the thought of our own parents dying, that image helped me. To tend our parents as they once tended us, to tend others as we ourselves hope someday to be tended to, is indeed a sacred act.
In Butler's case, her father had a pacemaker installed just about the time that he probably would have gracefully begun to decline into senility and death. Instead, the pacemaker kept him alive, year after year, wearing his wife and daughter out despite their love for him. And here's what makes the books so great. While Butler does an excellent job as a journalist detailing the rise of modern medicine along with nifty devices like pacemakers and the problems they bring, she also describes her personal journey of love for her parents. She's totally honest. While she loves and admires them, they were clearly not easy parents on their children. Butler's brothers barely come to visit. Butler herself often ends visits by catching an early flight. Butler does not sugarcoat anything. Most of us have complicated relationships with our parents. Butler reminds us that we will have to deal with this even as our parents die.
In many ways, Butler's book reminds me of my own. Both of us blend our personal experiences with letting someone die along with the state of modern medicine. Both of us obviously believe that what makes the difference is paying enough attention to this final act in life that we can go through it with grace. Even being similar, Butler's book gave me something new. Halfway through the book, she describes her father in his dementia as if he were Tintern Abbey, the ruin described so beautifully by Wordsworth. She writes, "Never would I wish upon my father the misery of his final years. But he was sacred in his ruin, and I took from it the shards that will sustain me." Though we may resist the thought of our own parents dying, that image helped me. To tend our parents as they once tended us, to tend others as we ourselves hope someday to be tended to, is indeed a sacred act.
October 31, 2013
Here is what I think: you should go out right now and pick up a copy of this book.
Go on, I'll wait.
The library, the bookstore, download it from Barnes and Noble or Amazon. Whatever.
I am totally serious.
Fine. Next time you are out and about. Honestly, I found this book to be well-written, well (and quite thoroughly) researched (and footnoted), and unvarnished. Unflinchingly, Butler discusses her parents' declining health and ultimate demise, and dares to search out answers for questions both during their struggle and after. The ultimate question of the book: how can we help our loved ones die with dignity, as easily and painlessly as possible, without pushing them (too early) into the abyss?
Butler changed my view on several events in my own life, and how my older relatives have lived (and are living) their final years. This would be a great book club book, but its only drawback is that you should probably not give it as a holiday present. ;) READ IT!
Go on, I'll wait.
The library, the bookstore, download it from Barnes and Noble or Amazon. Whatever.
I am totally serious.
Fine. Next time you are out and about. Honestly, I found this book to be well-written, well (and quite thoroughly) researched (and footnoted), and unvarnished. Unflinchingly, Butler discusses her parents' declining health and ultimate demise, and dares to search out answers for questions both during their struggle and after. The ultimate question of the book: how can we help our loved ones die with dignity, as easily and painlessly as possible, without pushing them (too early) into the abyss?
Butler changed my view on several events in my own life, and how my older relatives have lived (and are living) their final years. This would be a great book club book, but its only drawback is that you should probably not give it as a holiday present. ;) READ IT!
May 30, 2013
Though this book deals with tough issues it is an absolute pleasure to read. This riveting story of the author’s loving journey with her parents through the labyrinth of modern medicine is one of the most courageous and beautifully written books I’ve read in any genre. Butler’s honesty, humility, intelligence and compassion grabbed my heart from page one. Her journalistic skills coupled with her talent as a writer combine to open our eyes and minds to choices we may not know we have until it is too late. Yes, this is a book about a search for a better way of death, but it is so much more. It is a book about real life, true love and discovering the liberty to choose, told in an intimate family drama. It is deeply moving, radically informative, uplifting and unforgettable. Everyone should read this book.
September 26, 2013
Almost six months ago today I said goodbye to my 87-year-old grandfather after what had been a few years of amazingly painful decline in his quality of life. Katy Butler discusses the decline and dying process of her father in this book, and provided some truly eye-opening information on what we as children/grandchildren/medical community/insurance are doing in an effort to keep our loved ones alive, even though the life they are left with is not much life at all.
Making decisions about end-of-life care are hard on everyone involved in the process, and while "Knocking on Heaven's Door" was tough to read in many parts, I could really feel Butler's pain and suffering as she and her family went through this ordeal. It's almost impossible to feel like you are ever doing the "right thing." Butler brings up the Buddhist concept of the "second arrow" which is a classic sutra where Buddha says that if someone shoots you in the foot, do not pick up the bow and a "second arrow" and shoot yourself again. Don't try to argue with what has already happened. Accept the pain and don't regret what has already happened. This is the one thing I think I'll really take away from this book. Remember to avoid the second arrow. The pain of the process is enough.
Making decisions about end-of-life care are hard on everyone involved in the process, and while "Knocking on Heaven's Door" was tough to read in many parts, I could really feel Butler's pain and suffering as she and her family went through this ordeal. It's almost impossible to feel like you are ever doing the "right thing." Butler brings up the Buddhist concept of the "second arrow" which is a classic sutra where Buddha says that if someone shoots you in the foot, do not pick up the bow and a "second arrow" and shoot yourself again. Don't try to argue with what has already happened. Accept the pain and don't regret what has already happened. This is the one thing I think I'll really take away from this book. Remember to avoid the second arrow. The pain of the process is enough.
August 13, 2016
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.
April 13, 2018
I feel this book's reputation is misleading. It isn't, in the main, how to help someone you love have a good death. It is mostly a memoir of the author's difficult years with her dying parents. The part that is common sense helpful doesn't come until the very end. I'd like to see that section offered as a separate guide. I wearied of the author's angst and conflicts, mostly with her mother. The parts about the costs of the current medical system aren't exactly new, at least not anymore. Somewhat interesting. But what I wanted, and what I was told this book was, was a guide to negotiating the health care system when a parent no longer desires active medical intervention. That is less than 10% of the book. Very disappointed for the most part. Also, way too much glamorization and nostalgia for death in bygone eras, like the middle ages.
June 27, 2017
I am sure some of you will think or say - what a weird reading choice for christmas!?...believe it or not, i got so engrossed in the book i only thought about it once it finished.
When is it time to say goodbye (to a loved one who is dying in front of your eyes)?
When the pain becomes too much, when there is nothing to be done, when they say its ok for you to let them go? now isnt that a very tricky question to answer.....
No matter how much you plan it, no matter the preparations you may or may not do towards old age, disease and death, its only when you are actually hit by one such situation that you can truly know how you will respond.
Katy Butler, drawing from a deeply personal and painful experience - the decline and death of her father - does an outstanding job of showing us how ill prepared we humans are to deal with dying.
Mankind has reached such a stage of medical development that anything goes these days to keep us breathing till the very end, and beyond whatever life expectancy was once deemed "normal".
I went through a similar situation with my own grandfather, once an agile and mentally healthy 85 year old that, having one day literally stumbled on his own feet and fallen, ended up in a nursing home and dead after 18 months - of a steady and very painful to watch decline in his ability to walk, talk and take care of himself.
Having witnessed such a scenario in front of my own eyes, and having seen what it did to my mom - it was her father - i can say with 100% certainty that i fully understand and support the author´s choices when it came to her father, and essentially respecting his wishes.
This wont be an easy read, but its one i most certainly reccomend, because not only does it explore the last human taboo (well maybe the second last..the other one being sex)- Death - but also provides an insightful and very well researched look into the american health industry and just how "bad" things are.
I call it industry because after having lived for several years in a country with public and effective health care for all, the current american reality is to me no more than an assembly line of sorts where the patient goes in and only lord knows how, or if, he comes out!
Anyone going through a moment of assessing options for themselves or their loved ones - this is a must; anyone wanting literally to plan ahead for old age - by all means read it!; anyone swearing "by the bible" that they will act this way or that...well give this one a try and hear the other side of the story...i promise you wont regret it.
i give it 4.5 stars for one simple reason - the research presented is good, to the point and essential to understand the authors own journey, however at times it did get a little hard to focus on so many numbers..it distracted me somewhat and made me take longer then usual to finish the book.
happy readings!
When is it time to say goodbye (to a loved one who is dying in front of your eyes)?
When the pain becomes too much, when there is nothing to be done, when they say its ok for you to let them go? now isnt that a very tricky question to answer.....
No matter how much you plan it, no matter the preparations you may or may not do towards old age, disease and death, its only when you are actually hit by one such situation that you can truly know how you will respond.
Katy Butler, drawing from a deeply personal and painful experience - the decline and death of her father - does an outstanding job of showing us how ill prepared we humans are to deal with dying.
Mankind has reached such a stage of medical development that anything goes these days to keep us breathing till the very end, and beyond whatever life expectancy was once deemed "normal".
I went through a similar situation with my own grandfather, once an agile and mentally healthy 85 year old that, having one day literally stumbled on his own feet and fallen, ended up in a nursing home and dead after 18 months - of a steady and very painful to watch decline in his ability to walk, talk and take care of himself.
Having witnessed such a scenario in front of my own eyes, and having seen what it did to my mom - it was her father - i can say with 100% certainty that i fully understand and support the author´s choices when it came to her father, and essentially respecting his wishes.
This wont be an easy read, but its one i most certainly reccomend, because not only does it explore the last human taboo (well maybe the second last..the other one being sex)- Death - but also provides an insightful and very well researched look into the american health industry and just how "bad" things are.
I call it industry because after having lived for several years in a country with public and effective health care for all, the current american reality is to me no more than an assembly line of sorts where the patient goes in and only lord knows how, or if, he comes out!
Anyone going through a moment of assessing options for themselves or their loved ones - this is a must; anyone wanting literally to plan ahead for old age - by all means read it!; anyone swearing "by the bible" that they will act this way or that...well give this one a try and hear the other side of the story...i promise you wont regret it.
i give it 4.5 stars for one simple reason - the research presented is good, to the point and essential to understand the authors own journey, however at times it did get a little hard to focus on so many numbers..it distracted me somewhat and made me take longer then usual to finish the book.
happy readings!
May 9, 2015
This "investigative memoir" delves into the experiences of a middle-aged daughter navigating our Kafkaesque healthcare system and her own despair, anger, and ambivalence during her father's six-year decline following a devastating stroke. The central message of the book is that too many of us default ourselves and our loved ones into a medicalized labyrinth of tests, procedures, and futile measures that drain them and us of funds and dignity as we die. Most tragically, we routinely miss the opportunity to engage meaningfully with family and friends at the end of our lives.
The author offers a prescriptive approach to avoiding this fate but for me the whole issue boils down to the challenge to a patient or loved one of saying "no" to the next test, drug, or procedure. In the moment, the incremental cost of such measures seems trivial in comparison to the hope they provide. "You will have to face your fears and let go of denial and hope. That is what it takes to give yourself or someone you love a chance at the kind of death our ancestors held in high esteem."
The author offers a prescriptive approach to avoiding this fate but for me the whole issue boils down to the challenge to a patient or loved one of saying "no" to the next test, drug, or procedure. In the moment, the incremental cost of such measures seems trivial in comparison to the hope they provide. "You will have to face your fears and let go of denial and hope. That is what it takes to give yourself or someone you love a chance at the kind of death our ancestors held in high esteem."
December 6, 2017
Onvan : Knocking on Heaven's Door: The Path to a Better Way of Death - Nevisande : Katy Butler - ISBN : 1451641974 - ISBN13 : 9781451641974 - Dar 336 Safhe - Saal e Chap : 2013
August 16, 2013
“Knocking on Heaven’s Door” by Katy Butler, published by Scribner.
Category – Death and Dying Publication Date – September 2013
Death and Dying is certainly not a topic most of us want to read or hear about, however we have been headed that way since our birth and it has been proven to be inescapable “Knocking on Heaven’s Door” is the story of Katy Butler and her parents. Katy explores not only the dying part but what comes before it. Katy’s father, Jeff, in his eighties was given a pacemaker, arguably in was a procedure that should or should not have been done. The implanting of the pacemaker becomes a vital part of their lives as Jeff falls further and further into disability. Katy’s mother, Valerie, is burdened with taking care of her husband. This becomes especially hard when he is unable to do even the simplest everyday tasks. It becomes such a burden that she falls into despair and actually wishes for his death. When the family attempts to shut off the pacemaker they find that they can find no one willing to do it due to ethics and liability, thus prolonging a life that may well have ended long ago if the pacemaker had not been implanted. After Jeff’s death, Valerie (knowing what she has gone through) makes certain that this will not happen to her. She is diagnosed with a fatal disease but insists that no measures be taken to prolong her life. A very good expose of out medical system that touches on what measures should be taken to keep a person alive when the only thing keeping them alive is modern technology. One also must ask the question as to who makes the decision to stop treatment, and at what point is the quality of life a factor in the decision making.
The book has many high points and makes it well worth reading, however there are parts that bog down and take away from the true purpose of the book.
Category – Death and Dying Publication Date – September 2013
Death and Dying is certainly not a topic most of us want to read or hear about, however we have been headed that way since our birth and it has been proven to be inescapable “Knocking on Heaven’s Door” is the story of Katy Butler and her parents. Katy explores not only the dying part but what comes before it. Katy’s father, Jeff, in his eighties was given a pacemaker, arguably in was a procedure that should or should not have been done. The implanting of the pacemaker becomes a vital part of their lives as Jeff falls further and further into disability. Katy’s mother, Valerie, is burdened with taking care of her husband. This becomes especially hard when he is unable to do even the simplest everyday tasks. It becomes such a burden that she falls into despair and actually wishes for his death. When the family attempts to shut off the pacemaker they find that they can find no one willing to do it due to ethics and liability, thus prolonging a life that may well have ended long ago if the pacemaker had not been implanted. After Jeff’s death, Valerie (knowing what she has gone through) makes certain that this will not happen to her. She is diagnosed with a fatal disease but insists that no measures be taken to prolong her life. A very good expose of out medical system that touches on what measures should be taken to keep a person alive when the only thing keeping them alive is modern technology. One also must ask the question as to who makes the decision to stop treatment, and at what point is the quality of life a factor in the decision making.
The book has many high points and makes it well worth reading, however there are parts that bog down and take away from the true purpose of the book.
July 18, 2014
I was expecting much more from this book. Instead of being an expose or an actual investigative report about the state of "the end of life" industries, it was a not-very-perceptive account of the deaths of the author's father and mother. The author comes off really badly, many of her decisions and actions just reflecting a selfishness that isn't flattering. The book itself focuses on her very baby-boomerish preoccupation with her own life choices and totally derails the idea that the book is "about" trying to change the way we approach death.
Like many people who pride themselves on their open-mindedness and supposedly life-altering embrace of Buddhism, she makes a couple totally uncalled-for jabs at orthodox religion-- how it's harmed her, who was neither raised in an orthodox religion nor ever apparently oppressed by one, we're never sure. She works hard to justify the choices she made, some of which are morally dubious at best. It's just overall a very disappointing book. She slaps about six pages of her "investigative reporting" at the tail end of the book, which I presume was to justify the subtitle of the book, but it really never rises to anything more important or insightful than her navel-gazing and petulant complaints ending almost invariably in "I bumped up my airline reservation dates because my mom was so impossible."
Overall, a waste of time if you're looking for insight. Only useful for those with horrible relationships with their parents who want reassurance that they're not the only people wishing mom and dad dead.
Like many people who pride themselves on their open-mindedness and supposedly life-altering embrace of Buddhism, she makes a couple totally uncalled-for jabs at orthodox religion-- how it's harmed her, who was neither raised in an orthodox religion nor ever apparently oppressed by one, we're never sure. She works hard to justify the choices she made, some of which are morally dubious at best. It's just overall a very disappointing book. She slaps about six pages of her "investigative reporting" at the tail end of the book, which I presume was to justify the subtitle of the book, but it really never rises to anything more important or insightful than her navel-gazing and petulant complaints ending almost invariably in "I bumped up my airline reservation dates because my mom was so impossible."
Overall, a waste of time if you're looking for insight. Only useful for those with horrible relationships with their parents who want reassurance that they're not the only people wishing mom and dad dead.
April 13, 2014
This memoir is an intensely personal recounting by Katy Butler of the deaths of both her parents, which she then makes universal and political. One of the most poignant statements for me was when Ms. Butler realized that the medical interventions that were prolonging her father's life, even as his dementia progressed, were taking years off the life of her mom, as his caretaker. Ms. Butler analyzes the current medical practices around the issues of end-of-life care and treatment, and recommends significant changes. This book is touching, well-written, and thought provoking. The narration, by the author, was excellent.
April 21, 2015
Happened to see this on the shelf at the library after reading Being Mortal. This book is along the same lines, but deals with one woman's personal story of her father's stroke, and the subsequent installation of a pacemaker. His body slowly fell apart, but his heart kept going because pacemaker batteries last a very long time. Definitely a good book to read along with Being Mortal. Can be the start of several conversations for families about what medical decisions should be made regarding quality of life at the end of one's life.
November 21, 2016
Superb treatment of a difficult subject -- part memoir and part investigative journalism, read this book BEFORE you make decisions for your parents and, later, for yourself. I walked beside my mother on the long, rugged road to the end of her life, and I learned things in this book that I still didn't know and wish I had. If I had known them, I would have better negotiated that confusing, isolating, and fearful labyrinth we call a hospital. Highly recommended.
December 2, 2014
Not nearly enough science and medicine or discussion over the system of dying in the United States and entirely too much content covering the authors issues with her mother.
April 23, 2025
The best part of this book was probably the end, where the author listed practical suggestions for caregivers who care for aging parents. We don't talk about aging and death enough, and families are most often unprepared to face end of life decisions for the people they love. This book is a good example of one family's experience and how it could have gone better.
May 1, 2013
Disclosure: I choose to read this book for review because I have an healthy fascination with death rituals which stems from studying anthropology. I also have several friends that are going into the medical field or are already there. While reading this book I was looking a relaxed, informational way of portraying the information and cultural attitudes about death, while also looking at any "how they did it" sort of information.
Knocking on Heaven's Door is a memoir of what Butler and her family went through after her father's stroke, and details the tribulations of dealing with the corrupt medical system. I applaud Butler for having the guts to write this book. Anyone would find the subject matter personal and extremely difficult to write. However, Butler uses that to infuse the writing with eloquence and passion. Several times I caught myself wishing I could help her and her family during their crisis as any human being would want to help another that is suffering.
During this impassioned writing, Butler does a fairly good job at explaining the medical system, and how the system is set up for allowing a good deal of corruption and pressure from the biomedical industry. During which, she specifically explains Medicare, the pace-maker industry, and how doctors are monetarily rewarded by the industries for putting mechanical parts in people, rather than spending a little extra compassionate time with the patient. Despite having been so affected by this sort of drama, Butler shows heroic constraint when detailing the set up and how it affected her family. You can tell it's biased, but it is far from inflammatory. The descriptions are simply matter of fact with a personal anecdote.
Butler also recounts the difficulties inherent with getting a life saving medical treatment, such as a pacemaker, turned off when the patient is suffering and miserable, but unable to communicate these thoughts. This is quite possibly the most tragic and interesting parts to me from an anthropological point of view. Butler notes all the people she talked to on the ethics committees, and all the steps they take to ensure that it's not a murder to turn off the medical equipment. She also notes the limitations of a hospice and a "do not resuscitate" bracelet may affect the various medical decisions along the way. These little notes of wisdom of what the Butler family faced may help others facing similar situations, as well as offer compassion and understanding.
Butler also repeatedly mentions another aspect that I found quite interesting from an anthropological point of view: She notes that her parents grew up in an age where medical advancements were really just starting, and the whole of their generation was enamoured by science, but there wasn't the healthy dose of skepticism yet. Butler notes the changes coming to such an attitude as information and experiences are had and shared.
There was one part of the book that I thought completely irrelevant, and that was when Butler spent a whole chapter explaining how she and her mother found Zen Buddhism. Not that being a Buddhist is irrelevant, since that aspect shows how she and her mother approached things from a pacifist way. We all know that we are influenced by our beliefs, so that part is relevant. But to spend an entire chapter on the finding of Buddhism shuffled into the middle of the book struck me as not relevant. After this point, my interest in the book dwindled.
Alas, despite the one chapter that threw my attention off, it was a pretty decent book. It was good all the way to the last 2 chapter, which then diverted from the memoir to more of a commentary on "slow medicine" and "good deaths". In Butler’s opinion, as well as my own, slow medicine for those nearing death and a good death are more important than expensive last ditch efforts to extend life by a day, even if that life is miserable.
As a final note, Butler mentioned in the book that her age was in the early 50s as she went through this ordeal. This information is definitely in a past tense, and there may be advancements in ethics committees and the regulations that Butler didn't mention. I do hope that a lot of people read this book, and when they do, they have the courage to ask their doctors for more information, then really evaluate their options to live out life the way they want to live through their twilight years.
This was a truly good book, but due to the chapter on how the Butler women came to Buddhism making my attention flag in the middle of the book and the ending chapters being less passionately written than the others, I did not give it 4 or 5 stars. I'd give it 3.5 if Goodreads had allowed it. It's an enlightening and academic book as much as it is a heart warming and, at times, a heart wrenching memoir.
Knocking on Heaven's Door is a memoir of what Butler and her family went through after her father's stroke, and details the tribulations of dealing with the corrupt medical system. I applaud Butler for having the guts to write this book. Anyone would find the subject matter personal and extremely difficult to write. However, Butler uses that to infuse the writing with eloquence and passion. Several times I caught myself wishing I could help her and her family during their crisis as any human being would want to help another that is suffering.
During this impassioned writing, Butler does a fairly good job at explaining the medical system, and how the system is set up for allowing a good deal of corruption and pressure from the biomedical industry. During which, she specifically explains Medicare, the pace-maker industry, and how doctors are monetarily rewarded by the industries for putting mechanical parts in people, rather than spending a little extra compassionate time with the patient. Despite having been so affected by this sort of drama, Butler shows heroic constraint when detailing the set up and how it affected her family. You can tell it's biased, but it is far from inflammatory. The descriptions are simply matter of fact with a personal anecdote.
Butler also recounts the difficulties inherent with getting a life saving medical treatment, such as a pacemaker, turned off when the patient is suffering and miserable, but unable to communicate these thoughts. This is quite possibly the most tragic and interesting parts to me from an anthropological point of view. Butler notes all the people she talked to on the ethics committees, and all the steps they take to ensure that it's not a murder to turn off the medical equipment. She also notes the limitations of a hospice and a "do not resuscitate" bracelet may affect the various medical decisions along the way. These little notes of wisdom of what the Butler family faced may help others facing similar situations, as well as offer compassion and understanding.
Butler also repeatedly mentions another aspect that I found quite interesting from an anthropological point of view: She notes that her parents grew up in an age where medical advancements were really just starting, and the whole of their generation was enamoured by science, but there wasn't the healthy dose of skepticism yet. Butler notes the changes coming to such an attitude as information and experiences are had and shared.
There was one part of the book that I thought completely irrelevant, and that was when Butler spent a whole chapter explaining how she and her mother found Zen Buddhism. Not that being a Buddhist is irrelevant, since that aspect shows how she and her mother approached things from a pacifist way. We all know that we are influenced by our beliefs, so that part is relevant. But to spend an entire chapter on the finding of Buddhism shuffled into the middle of the book struck me as not relevant. After this point, my interest in the book dwindled.
Alas, despite the one chapter that threw my attention off, it was a pretty decent book. It was good all the way to the last 2 chapter, which then diverted from the memoir to more of a commentary on "slow medicine" and "good deaths". In Butler’s opinion, as well as my own, slow medicine for those nearing death and a good death are more important than expensive last ditch efforts to extend life by a day, even if that life is miserable.
As a final note, Butler mentioned in the book that her age was in the early 50s as she went through this ordeal. This information is definitely in a past tense, and there may be advancements in ethics committees and the regulations that Butler didn't mention. I do hope that a lot of people read this book, and when they do, they have the courage to ask their doctors for more information, then really evaluate their options to live out life the way they want to live through their twilight years.
This was a truly good book, but due to the chapter on how the Butler women came to Buddhism making my attention flag in the middle of the book and the ending chapters being less passionately written than the others, I did not give it 4 or 5 stars. I'd give it 3.5 if Goodreads had allowed it. It's an enlightening and academic book as much as it is a heart warming and, at times, a heart wrenching memoir.
August 29, 2019
First, this book is totally miscategorized. Probably by the publisher and author to begin with, but then libraries have put it in non-fiction, as if this book is an expose on the overreach of the medical field when it comes to end-of-life care that doesn't take quality of life into any account. Instead it is a memoir by the author of her father's very slow decline after a stroke.
I have read hundreds of books and was stunned by how obvious the author gained absolutely no insight into her father's failing health by writing this book. Instead she repeatedly pointed fingers at who or what caused the poor health of her beloved father, who honestly didn't even seem like that nice of a person himself, having been overly critical and strict. She proceeds to repeatedly blame the pacemaker itself, and her brothers. We learn that her mother is dominating and controlling, words the author uses herself, and she tells us in numerous examples of how this is absolutely true. Yet she cannot fathom one bit why her brothers refuse to put their own lives on hold to go take care of parents who obviously were fairly brutal, and which seemed to be partly to blame for their own struggles in their lives.
She also claims that Medicare/Medicaid and insurance won't pay for pretty much any help for an ailing elderly parent, yet then proceeds to write numerous examples of help her father received soon after his first stroke, yet the extremely petty and controlling mother turned every last one of them away, causing her father's health to further decline. Yet the author totally has a blind spot where she does not at all see that her mother doing this is the REASON/CAUSE. It's absolutely bizarre. Instead she repeatedly blames the pacemaker. There's not even any proof that the pacemaker causes her father to persistently decline after his stroke.
I also don't know how she can blame the entire medical field for the entire family not being knowledgable about even the most basic things about pacemakers or strokes. His stroke occurred in 2001. The Internet existed then, and so did books, and the author is a journalist/writer whom you would assume is well-read or would be curious enough to go to books on these topics right when her father experienced them. Instead she was apparently far too busy becoming a "Buddhist" at the time to care to do this, some somehow it is the moral failing of every doctor. And by that time, there were even PSAs about the signs of a stroke, and how important care was after a stroke. It's not like the author was living in the dark ages where asking these questions and researching them wasn't going to lead nowhere.
Also particularly disgusting is when her father finally stopped speaking. The author states that her mother was rather cruel to the father, by finishing his sentences for him and even teasing him about the way he was speaking. Just...hello?
Few books do I wish to go out of print soon, but this is one of them. It offers now real ideas or alternatives or how to stop doctors from continuing life well beyond when they should. Instead it is just an angry, bitter, resentful memoir.
I have read hundreds of books and was stunned by how obvious the author gained absolutely no insight into her father's failing health by writing this book. Instead she repeatedly pointed fingers at who or what caused the poor health of her beloved father, who honestly didn't even seem like that nice of a person himself, having been overly critical and strict. She proceeds to repeatedly blame the pacemaker itself, and her brothers. We learn that her mother is dominating and controlling, words the author uses herself, and she tells us in numerous examples of how this is absolutely true. Yet she cannot fathom one bit why her brothers refuse to put their own lives on hold to go take care of parents who obviously were fairly brutal, and which seemed to be partly to blame for their own struggles in their lives.
She also claims that Medicare/Medicaid and insurance won't pay for pretty much any help for an ailing elderly parent, yet then proceeds to write numerous examples of help her father received soon after his first stroke, yet the extremely petty and controlling mother turned every last one of them away, causing her father's health to further decline. Yet the author totally has a blind spot where she does not at all see that her mother doing this is the REASON/CAUSE. It's absolutely bizarre. Instead she repeatedly blames the pacemaker. There's not even any proof that the pacemaker causes her father to persistently decline after his stroke.
I also don't know how she can blame the entire medical field for the entire family not being knowledgable about even the most basic things about pacemakers or strokes. His stroke occurred in 2001. The Internet existed then, and so did books, and the author is a journalist/writer whom you would assume is well-read or would be curious enough to go to books on these topics right when her father experienced them. Instead she was apparently far too busy becoming a "Buddhist" at the time to care to do this, some somehow it is the moral failing of every doctor. And by that time, there were even PSAs about the signs of a stroke, and how important care was after a stroke. It's not like the author was living in the dark ages where asking these questions and researching them wasn't going to lead nowhere.
Also particularly disgusting is when her father finally stopped speaking. The author states that her mother was rather cruel to the father, by finishing his sentences for him and even teasing him about the way he was speaking. Just...hello?
Few books do I wish to go out of print soon, but this is one of them. It offers now real ideas or alternatives or how to stop doctors from continuing life well beyond when they should. Instead it is just an angry, bitter, resentful memoir.
October 16, 2013
This book is published on September 2013. The dating of this book is important as the field of medical treatment for the gravely ill is still a battle field in the legal and financial front.
Something so routine -- a pacemaker -- would be the catalyst for a family's long struggle for a dignified natural death. The imperative of modern culture and modern science in US pushes for aggressive medication instead of looking at the whole value of human's life.
I applaud the author's courage and lucidity to bring out a first-person account of such a tragedy. Blending both personal history and medical/history/legal research, this book gives a compelling account of a long struggle for a family coming to grips with life, love, family and death. With a tight grip at emotion which often reaches various boiling eruption, the author is able to give us a compassionate and passionate story that lends its relevance to all of us.
Other simple things to watch for: the paper-thin "Living will", panicked 911 call which ignoring the Do Not Resuscitate Orders , the hospital ICU (which is likely a "never-say-die" death), every "yes" pressured at a moment (such as pacemaker, replacing valve, any surgery). Get elder law specialist, know the state-law, know the community supporting "slow medicine", palliative care, hospice, and other supporting groups.
Chapter 19 is a summary useful to all of us. "A map through the labyrinth"; mainly critical things are in the finer legal details. As I noted the date of this book's publication, time may change the map as well.
** Reference Resource information update -- Oct 2013 **
Caregiving and medical advocacy
(1) Hospital stay: The Patient's Checklist: 10 Simple Hospital Checklists to Keep you Safe, Sane & Organized by Elizabeth Bailey
(2) Emotional work at the end of life: Dying Well: Peace and Possibilities at the End of Life by Ira Byock MD
(3) Moral and practical framework for medical decisions: Hard Choices for Loving People: Cpr, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness
(4) Guidance on Medicare and assisted living: Jane Gross: A Bittersweet Season: Caring for Our Aging Parents--and Ourselves.
NY times blogger: http://newoldage.blogs.nytimes.com/au... on "New Old Age".
(5) Medical caregiving from decline to death: My Mother, Your Mother: What to Expect As Parents Age
Dennis McCullough
(6) End of life care in America TV series: "On Our Own Terms", Bill Moyer.
Points on Legality
Do Not Resuscitate, Advance Directives ("Living Wills"), Physician's Orders for Life-Sustaining Treatment (POLST), Medical Guardianship.
Ask for Palliative care or bioethics unit in hospitals.
Something so routine -- a pacemaker -- would be the catalyst for a family's long struggle for a dignified natural death. The imperative of modern culture and modern science in US pushes for aggressive medication instead of looking at the whole value of human's life.
I applaud the author's courage and lucidity to bring out a first-person account of such a tragedy. Blending both personal history and medical/history/legal research, this book gives a compelling account of a long struggle for a family coming to grips with life, love, family and death. With a tight grip at emotion which often reaches various boiling eruption, the author is able to give us a compassionate and passionate story that lends its relevance to all of us.
Other simple things to watch for: the paper-thin "Living will", panicked 911 call which ignoring the Do Not Resuscitate Orders , the hospital ICU (which is likely a "never-say-die" death), every "yes" pressured at a moment (such as pacemaker, replacing valve, any surgery). Get elder law specialist, know the state-law, know the community supporting "slow medicine", palliative care, hospice, and other supporting groups.
Chapter 19 is a summary useful to all of us. "A map through the labyrinth"; mainly critical things are in the finer legal details. As I noted the date of this book's publication, time may change the map as well.
** Reference Resource information update -- Oct 2013 **
Caregiving and medical advocacy
(1) Hospital stay: The Patient's Checklist: 10 Simple Hospital Checklists to Keep you Safe, Sane & Organized by Elizabeth Bailey
(2) Emotional work at the end of life: Dying Well: Peace and Possibilities at the End of Life by Ira Byock MD
(3) Moral and practical framework for medical decisions: Hard Choices for Loving People: Cpr, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness
(4) Guidance on Medicare and assisted living: Jane Gross: A Bittersweet Season: Caring for Our Aging Parents--and Ourselves.
NY times blogger: http://newoldage.blogs.nytimes.com/au... on "New Old Age".
(5) Medical caregiving from decline to death: My Mother, Your Mother: What to Expect As Parents Age
Dennis McCullough
(6) End of life care in America TV series: "On Our Own Terms", Bill Moyer.
Points on Legality
Do Not Resuscitate, Advance Directives ("Living Wills"), Physician's Orders for Life-Sustaining Treatment (POLST), Medical Guardianship.
Ask for Palliative care or bioethics unit in hospitals.
This entire review has been hidden because of spoilers.
May 29, 2014
From the NYT: "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.”"
A powerful and thought-provoking book, difficult to read at times. When is the right time to die? What is a heroic measure and what is not? What procedure, if any, will ultimately improve one's quality of life at the end of one's life? How do you decide for yourself when you are suddenly thrust into it? How do you decide for someone you love?
The Buddhist elements of the book did nothing for me, but reading about Butler's journey through her father's agonizing decline rang so true.
A powerful and thought-provoking book, difficult to read at times. When is the right time to die? What is a heroic measure and what is not? What procedure, if any, will ultimately improve one's quality of life at the end of one's life? How do you decide for yourself when you are suddenly thrust into it? How do you decide for someone you love?
The Buddhist elements of the book did nothing for me, but reading about Butler's journey through her father's agonizing decline rang so true.
May 20, 2013
Every family in America should become an ad hoc book club and start the conversation Katy Butler’s brilliant book provokes. Documenting in heartbreaking detail her father’s descent into a special hell created at the muddled intersection of science and ethics, a hell in which his PaceMaker goes on reliably beating long after virtually every other part of his body shuts down, stripping a proud man of all dignity, a hell that spills over consumes the author and her mother for years, Knocking on Heaven’s Door is a fearlessly honest work of art that transfixes the reader and raises the questions we all need to ask ourselves and those we love.
May 16, 2013
This book truly grabbed me, as my family has recently lost an elderly relative to cancer. Death is not a 'family affair' anymore, where the ill are surrounded by those they love, where they may die on their own terms. Author Butler chronicles her own journey during her father's decline into dementia and illness, and when she wrote about how modern medicine prefers to keep elderly people alive instead of letting them go when they are supposed to, it tore apart my heart.
'Knocking on Heaven's Door' is a worthy read and a real eye-opener.
'Knocking on Heaven's Door' is a worthy read and a real eye-opener.
June 11, 2013
Having lost three family members in a year and a half, and witnessing both sudden and protracted death, this book captured each experience excruciatingly accurately. I think Butler has the right amount of clinical and research information in the narrative, and I really like the end part, where she provides a "map" and a reading list. Religion, spirituality, family, medicine - it's all in here. At one point, she writes that though she has been preparing and praying for her father's death for years, when the time actually comes, it surprises her. Exactly.
February 23, 2014
Not nearly as good as I was hoping it to be. Yes, death and dying is not easy - and yes, sometimes the health care professionals make all the "right calls" and other times... not so much. But geez... lady, did you really have to hang the whole thing on "turn the pacemaker off"? A very complicated topic handled from a very narrow perspective. If she's a whistle blower... seems like she needs a better whistle... disappointed after waiting a long time to actual get the book from the library.
July 12, 2023
Review: Knocking on Heaven's Door: The Path to a Better Way of Death (Katy Butler) I read this because my daughter (who is a hospice nurse) is in a professional group that takes on an occasional group read. I was on vacation in Kansas and, surprisingly, this was easy to whip through in a couple of days. The author reflects on two very different deaths: those of her mother and father. Along the way, she tells of of the rather fractured family dynamics. I didn't find the biographical sections uninteresting, but I don't think they added anything to the main foci of the book. I wasn't surprised to learn that there are vastly different reactions to the issues/problems brought up in the book. Katy's father suffered a massive stroke and lived on another seven years, thanks to the decision to give him a pacemaker (the little device that, in her opinion, ended up extending his life well beyond his capacity to live with any joy). At first, though, it did enable him to recover considerably... to grow physically stronger, to at one point walk himself to the local pool and swim regularly. But as more things began to shut down in his body (more minor and undetected at first strokes, leading to incontinence that barred him from swimming in the local pool; a deteriorating mental capacity as he entered dementia, passing out often and falling, more interventions in the ICU to keep him alive even as his physical deterioration led him to a state of sitting, mostly blind and unable to speak), Katy questions a medical system that seeks to prolong life as the only goal, leading to (in her belief) long and lingering suffering in the individual, all of this greatly enriching those doctors who have chosen to specialized in cardiac (and other) extraordinary devices to keep the body alive. Her mother completely exhausted herself for seven years trying to take care of her failing husband. Medicare pays for extraordinary (and extrordinarily expensive) end of life interventions but has low limits on payouts for such things ans palliative care and hospice, encouraging a system that leaves dying people in limbo without the kind care that could make their final years/months less traumatic and more humane. On the other hand, her mother, already a breast cancer survivor and totally run down by lost years of struggling to care for her husband (both were in their 80's), only survived him by a couple of years.... she chose, as a Buddhist, to refuse extraordinary interventions. Her death was not as lingering, but still, it was a bit drawn out and painful. It seems obvious that Kay Butler feels her mother chose the right path. There are SO many talking points in this book. I learned a lot but was somewhat overwhelmed by the whole book.
January 23, 2025
Just over 10 years ago I read this book for the first time. I’d just had my second baby, my oldest child barely out of kindergarten, and my mom had recently ushered her own parents through their deaths, one shortly following the other.
I instantly loved this memoir at that time, the way the fierce medical journalism melded with the raw and complicated emotional ordeal of caring for aging parents. Especially with the naked honesty with which Butler does it.
This was the first time I’d understood what hospice was, that I’d heard the words palliative care and honestly still wonder about palliative social work as the road not taken.
Now my oldest child is halfway through high school, my youngest is a tween. I am 10 years older and my parents are aging and have some rough road ahead. I turned to this book again, but this time worried and sad. Im still sad, but not as worried as I was perhaps before picking it up again.
I instantly loved this memoir at that time, the way the fierce medical journalism melded with the raw and complicated emotional ordeal of caring for aging parents. Especially with the naked honesty with which Butler does it.
This was the first time I’d understood what hospice was, that I’d heard the words palliative care and honestly still wonder about palliative social work as the road not taken.
Now my oldest child is halfway through high school, my youngest is a tween. I am 10 years older and my parents are aging and have some rough road ahead. I turned to this book again, but this time worried and sad. Im still sad, but not as worried as I was perhaps before picking it up again.
Displaying 1 - 30 of 532 reviews