Knocking on Heavens Door: The Path to a Better Way of Death

If he collapsed and my mother called , paramedics would do everything they could to revive him as they rushed his gurney toward the emergency room.

Knocking on Heaven’s Door

With just a little more bad luck, my father might be wheeled into an intensive care unit, where my mother and I—and even my dying father—would become bystanders in a battle, fought over the territory of his body, between the ancient reality of death and the technological imperatives of modern medicine. It was not how we wanted him to die, but our wishes might not mean much. Three-quarters of Americans want to die at home, as their ancestors did, but only a quarter of the elderly currently do.

Two-fifths of deaths now take place in a hospital, an institution where only the destitute and the homeless died before the dawn of the twentieth century. If my mother and I did not veer from the pathway my father was traveling, he might well draw his last breath in a room stripped of any reminder of home or of the sacred, among doctors and nurses who knew his blood counts and oxygen levels but barely knew his name. Then again, the hospital might save his life and return him home to suffer yet another final illness. And that I feared almost as much. I loved my father, even as he was: I loved my mother and wanted her to have at least a chance at a happy widowhood.

In the six months that followed, I would learn much about the implications of that vow, about the workings of pacemakers and of human hearts, about law and medicine and guilt, about money and morality. I would take on roles I never imagined could be played by a loving daughter. I would watch my father die laboriously with his pacemaker still ticking. Researching a magazine article and then this book, I would discover something about the perverse economic incentives within medicine—and the ignorance, fear, and hope within our own family—that promoted maximum treatment.

Armed with that bitter wisdom, I would support my mother when she reclaimed her moral authority, defied her doctors, refused a potentially life-extending surgery, and faced her own death the old-fashioned way: Thanks to a panoply of relatively recent medical advances ranging from antibiotics and vaccines to dialysis, systems, and airport defibrillators, elderly people now survive repeated health crises that once killed them.

But death is wily. Barred from bursting in like an armed man, it wages a war of attrition. Eyesight dims, joints stiffen, heartbeats slow, veins clog, lungs and bowels give out, muscles wither, kidneys weaken, brains shrink. Half of Americans eighty-five or over need help with at least one practical, life-sustaining activity, such as getting dressed or eating breakfast.

Nearly a third have some form of dementia, and more develop it with each year of added longevity. The burden of helping them falls heavily on elderly wives and middle-aged daughters, with the remainder provided by sons and husbands, hired caregivers, assisted living complexes, and nursing homes.

Every day across the country, family caregivers find themselves pondering a medical procedure that may save the life—or prevent the dying—of someone beloved and grown frail. The questions surface uneasily in medical journals and chat rooms, in waiting rooms, and in conversations between friends.

However comfortingly the questions are phrased, there is no denying that the answers, given or avoided, will shape when and how someone we love meets death. This is a burden not often carried by earlier generations of spouses, sons, and daughters. We are in a labyrinth without a map. Before I shepherded my parents through to their deaths, I thought that medical overtreatment was mainly an economic problem: It began with a family crisis, an invitation to a distant daughter to open her heart, and a seemingly minor medical decision: Photograph by Camille Rogine.

Scribner June Length: From Spouse to Caregiver: Winter, New York Journal of Books. Jack Kornfield, author of A Path with Heart. Its tenderness, beauty, and heart-breaking honesty matches the stunning data on dying in the West. A splendid and compassionate endeavor. Cultivating Compassion and Fearlessness in the Presence of Death.

Customers who bought this item also bought

Her year-old mother was crushed by six years of constant caretaking — joining some 66 million Americans, mostly women, in the same situation. At the same time, she lays her heart bare, making this much more than ideological diatribe. Readers…should be sure to pick up this book. It is one we will be talking about for years to come. Suzanne Koven, The Boston Globe. 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. 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. Jan 02, Nancy rated it it was ok. 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 I feel this book's reputation is misleading.

Buy for others

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. Very disappointed for the most part. Also, way too much glamorization and nostalgia for death in bygone eras, like the middle ages.

Apr 21, Ginger rated it it was amazing. 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 quali Happened to see this on the shelf at the library after reading 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.

Nov 20, Sue rated it it was amazing Shelves: 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. Feb 06, Maggiemuggins rated it did not like it. I am adding this later after I bought Eldercare for Dummies which is written in the usual Dummies style - that is, sensible and useful. It is full of hints and tips and give the fulls details of various governmental and NGO places which can help.

It doesn't waste time as Butler's book does, patting itself on the back but lays out what carers need to know in a concise fashion. This is the one to get if you love your elder person enough to want him or her to be safe, well-cared for and comfortable I am adding this later after I bought Eldercare for Dummies which is written in the usual Dummies style - that is, sensible and useful. This is the one to get if you love your elder person enough to want him or her to be safe, well-cared for and comfortable in old age. What follows is my original review of Knocking on Heaven's Door.

I'm getting old myself so I know that what matters most in caring for the elderly is doing what needs to be done before it needs to be done, so, if you're looking for a book that may help in the care of an elderly parent, this one might do — in an entirely negative way. A more selfish, unhelpful and thoughtless way of caring for an old parent it would be difficult to imagine: Don't even consider getting a stair-lift until after he's fallen down the stairs, breaking his wrist and landing on his wife turning her black-and-blue from hip to ankle — and then not dissuading his wife, aged 84, from getting rid of it after he's gone, although she has already, herself, begun to show signs of instability.

Rather than buy him a comfortable, padded, power-lift chair designed to ease the elderly safely off their chairs and upright, park him by the hour on an iron garden chair dragged indoors for the purpose, and, finally, don't even dream of telling the orderlies in the hospital that he has only one arm — leave them to discover for themselves that he needs help with food and drink.

I finally became so angry at the selfishness of the children of these unfortunate parents that I could barely force myself to finish the book. If the children had been involved in useful, worthwhile careers, I might have been able to forgive their absolute refusal to make even the slightest change, temporarily, to their own lives in order to make their parents' last years more comfortable and safe.

Do not, unless you use it as a guide to what-not-to-do, even think of using this awful book as an aid in the care of seniors or the infirm. Why any publisher would bother with such a book I can't imagine — for the money, I suppose. It's an absolute disgrace. Jul 18, Marti Booker rated it it was ok. 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 "ab I was expecting much more from this book. 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.

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. View all 3 comments. Sep 07, Diane Henry rated it really liked it. 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.

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?

‘Knocking On Heaven’s Door’ by Katy Butler

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, Mel Ziegler rated it it was amazing.

• Strong and Stubborn (Husbands for Hire Book 3).
• Personal story provides guide to those caring for dying parents!
• See a Problem?.

May 13, Jacki Leach rated it it was amazing. 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.

May 21, Jaime rated it it was amazing. 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 year 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. 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.

Sep 14, Judy Evenson rated it it was ok Shelves: 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 A very complicated topic handled from a very narrow perspective.

If she's a whistle blower Sep 10, Mightty rated it it was ok. 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. Jul 13, Joann Amidon rated it really liked it. This book is well researched and well written and should be read by everyone caring for someone nearing the end of their life. It would not be out of line for anyone approaching their later years to read it as well. I especially liked her historical recounting of the technological developments in medicine which have led us to our current standards of care and I appreciated her cautions regarding the use of these technologies.

Emotions and fear all too often lead people to make decisions they mig This book is well researched and well written and should be read by everyone caring for someone nearing the end of their life. Emotions and fear all too often lead people to make decisions they might otherwise not have made. My one complaint about the book was that Butler's personal angst and story got in the way at times, distracting from the important message she was trying to share.

I appreciate that she and her mother had a difficult time, many do, but there was too much repetition of their difficulties. Still, it is an important book with a great deal of helpful information. Oct 07, Joyce rated it really liked it. Many people make rush decisions in times of panic and stress, without being thoroughly informed about the pros and cons of the treatment plans, or alternatives, only to discover the dire consequences of these choices much later.

Jun 22, Louise rated it it was amazing. Two deaths, one beautifully orchestrated by a woman who saw her husband fade slowly over years and ultimately lose control over his body and choices. I am an ICU nurse who sees these sometimes sad, sometimes beautiful, sometimes angst filled end of life decisions. The best moral of this story is: Pick someone who is strong and is able to say no if choices will not be in your best interests, no matter who is trying to force their beliefs on you. 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 Disclosure: 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.

• Editorial Reviews?
• Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler!
• The Path to a Better Way of Death.
• My True Ghost Stories!

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.