Knocking on Heaven's Door: The Path to a Better Way of Death

Spoiler alert: Medicare is imperfect and so is your physician. Those are just two of the takeaways from Katy Butler's "Knocking on Heaven's Door: The Path to a Better Way of Death." Butler whipstitches together a personal story of family, life and loss, with a troubling but informative assessment of current medical practices and American cultural norms that surround end-of-life issues.I first encountered Butler's writing on the subject in a New York Times article in 2010 called "What Broke My Father's Heart." She laid out the multitude of personal and medical issues as her parents entered their 80s - a sudden health crisis of her father's that ultimately laid the groundwork for his years-long decline - stroke, heart disease, dementia, blood clots, brain hemorrhage. She explained how our current system more often than not intentionally draws out the process of dying. Medication, surgical interventions, technology - all of these things led to the shell of the man she knew as her father, simultaneously saving and dooming him. She also lovingly describes the impact his years-long dying had on her mother, who became a round-the-clock caregiver, bather, cook, cleaner and diaper changer.What stood out most to me, what I took away from that article, is explained more fully in "Knocking on Heaven's Door." That for many, many of us, being forced to make a split second decision in a medical emergency will likely lead to a much longer path of disease, decline, and pain. Your mother has a heart attack? "If you don't agree to a breathing tube/feeding tube/CPR/pacemaker RIGHT NOW, she will die, and it will be because you LET her." Few of us are capable of knowing all what should be known to make truly informed decisions about and for our loved ones - we just know we don't want to let her die in front of us, before the rest of the family can be told there's a decision to make, much less have the chance to say goodbye.And so I found myself nodding in recognition and understanding of what being part of this sorority of caregivers means. My family was in a similar spot. My mother had entered a hospital in May of 2008 to begin dialysis treatment for kidney disease, which had been treated to that point with medication. She did not return to her home until May of 2009. An endless list of crises emerged: A slip and fall in the hospital, compound fracture, infection, sepsis, endocarditis, MRSA, multiple temporary dialysis ports, cardiac arrest, three temporary pacemakers, one permanent pacemaker, atrophy, neglect, gangrene, amputation, three hospitals, and three skilled nursing facilities. Through the "wonders" of modern medicine, amazing strength on her part and dogged determination on our part, she finally returned home to her husband of nearly 50 years. Meanwhile, I racked up over $20,000 in airfare and expenses, flying back and forth between Hartford, Connecticut and Ft. Myers, Florida to handle the crises as they came. It was like a long distance game of Whack-a-Mole - you smack one down with a mallet, and another pops up over there. I used up all paid time off, and exhausted FMLA benefits. Ultimately, I put them on a plane to their native Michigan, sold their house in Florida, and joined them several months later, leaving a career and friends behind me on the east coast.The thing about books like this, at least for an average layperson like me, is that I didn't even know they existed. I knew next to nothing about any of my mother's health issues, and even less about Medicare and its rules. Or how to navigate the system. Or how to advocate for a family member. Or the importance of a medical quarterback. I didn't know I needed that kind of information, certainly not in advance of the "iceberg, right ahead!"But the initial article opened my eyes (mostly in horror) at what might further face us in the future. And why I was so glad to learn that the author was expanding on the article and working on a book. Butler's style of storytelling feels natural and warm. Her research into the professional health care field and the personal and societal costs are well-presented, and her conclusions are reasoned and imparted with empathy.I hope those who need this book find it before they tumble into the rabbit hole of end-of-life care. Her article in 2010 allowed our family to talk about the pitfalls that may face us in the future, and how we would want to proceed if x, y or z happened with either parent. Her article came two years before my mother's death, and it brought both comfort and clarity when we had difficult decisions to make. If you're a daughter (or son), or you're a mother (or father), use this as an opportunity to open a conversation with your loved ones. It's just one more way to care for each other.

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

I am writing to say thank you for sharing so much of the intimacy of your life journey with your parents in "Knocking On Heavens Door". For the last several years I have found myself living a strange life knowing there was something seriously wrong with my husband. We have been married for longer than half my life on this earth and many times I considered walking away because he was truly morphing into a stranger. In my heart and soul I knew there was something physically or mentally going awry. It was a long and painful journey to the diagnosis of Alzheimer's which came along with the suspicion there is probably some other form of dementia as well. Next month he will be 76 and I 63.Our dementia journey is just beginning and I am still very resistant. Instead of reading your book I listened to you read it as I am so tired I had difficulty sticking with the written word. In retrospect, the hard copy of the book has been on my nightstand for almost a year, it was more meaningful for me to listen to your voice sharing your story. Some of it was brutal for me to hear, I cried often as I got to know you, Jeff, and Val. There were passages you read from your mother's journal, conversations you had with her, that were chilling for me to hear as her words/thoughts could have been mine.I am figuring many things out and know that my husband and I want to take a palliative approach. There is very little that I feel confident about other than this has already changed me in ways I do not yet comprehend. For now I feel as though I have already stopped living and merely exist from one day to the next; I am actively working on 'self' hoping his disease does not consume me along the way. Your book has had a huge impact upon me, you have my gratitude.

A very well written work through a daughter's eyes of her parents journey to death. This compassionate journal deals with many of the most intimate and difficult times we all have to face. Dying, in first-world culture, has become almost a taboo; so much so that the shock & realization often leave us ill-prepared. We simply refuse to see the obvious: dying will be followed by death. The big question (certainly for me) is DIGNITY for our loved ones. In our haste to 'help', dignity and sanctity are too often forgotten. We are mortal...it is a time of life that should be treated with the utmost respect for all concerned, but most especially, the dying.Katy Butler's book pulls no punches - she compares one parent who 'goes along' with medical intervention - leading to utter angst, followed by the second parent who chooses not to fight her death via medical intervention.The sanctity of life goes all the way to our last breath - get your affairs in order earlier in life (say age 50ish), do a living will or advance directive, and get your kids on board!

One thing is certain with life. We all have to die. But how we choose to pass on is what this book is all about. In this modern age we seem to forget this fact and do anything we can to stay alive. But at what emotional and financial cost to family and friends? Katy's insights into how her parents passed on are very thought provoking and interesting. The choices are really between 'Slow medicine' and 'Fast medicine'. After reading Katy's book I will be opting for the Slow medicine route!

Excellent book. Extremely compassionate, emotional but at the same time with added insight and medical perspectives that shows a FULL picture and raises awareness of how difficult growing old can be, and the burden it is for loved ones. One of the best books I've read this year!

Excellent quality, delivered very quickly.

very readable and useful -