September 26, 2013

Knocking on Heaven's Door

Author: Katy Butler
Genre: Memoir
Publisher: Scribner, 2013
Pages: 336
Rating: Highly Recommend

Synopsis: In this visionary memoir, based on a groundbreaking New York Times Magazine story, award-winning journalist Katy Butler ponders her parents’ desires for “Good Deaths” and the forces within medicine that stood in the way.
Katy Butler was living thousands of miles from her vigorous and self-reliant parents when the call came: a crippling stroke had left her proud seventy-nine-year-old father unable to fasten a belt or complete a sentence. Tragedy at first drew the family closer: her mother devoted herself to caregiving, and Butler joined the twenty-four million Americans helping shepherd parents through their final declines.
Then doctors outfitted her father with a pacemaker, keeping his heart going but doing nothing to prevent his six-year slide into dementia, near-blindness, and misery. When he told his exhausted wife, “I’m living too long,” mother and daughter were forced to confront a series of wrenching moral questions. When does death stop being a curse and become a blessing? Where is the line between saving a life and prolonging a dying? When do you say to a doctor, “Let my loved one go?”
When doctors refused to disable the pacemaker, condemning her father to a prolonged and agonizing death, Butler set out to understand why. Her quest had barely begun when her mother took another path. Faced with her own grave illness, she rebelled against her doctors, refused open-heart surgery, and met death head-on.
With a reporter’s skill and a daughter’s love, Butler explores what happens when our terror of death collides with the technological imperatives of medicine. Her provocative thesis is that modern medicine, in its pursuit of maximum longevity, often creates more suffering than it prevents.
This revolutionary blend of memoir and investigative reporting lays bare the tangled web of technology, medicine, and commerce that dying has become. And it chronicles the rise of Slow Medicine, a new movement trying to reclaim the “Good Deaths” our ancestors prized.
Knocking on Heaven’s Door is a map through the labyrinth of a broken medical system. It will inspire the difficult conversations we need to have with loved ones as it illuminates the path to a better way of death.
Review: It is important to note that the full title of this book is Knocking on Heaven's Door: The Path to a Better Way of Death. It's the second part that drew me in. A better death? Death is death. Are there really varying degrees? A good death, a bad death, a better death. Death is death and dead is dead.

Not surprisingly a few years ago this book isn't one I would have chosen to read, and even when I read the synopsis online before requesting it from the library, I wasn't sure it would be any good. 

This wasn't a typical memoir, although the author certainly drew on her own experiences. She shared a wealth of knowledge about the current healthcare system in America that she learned experiencing the deaths of her parents. While I think she and I would have different views on most subjects, she confirmed and affirmed what I already knew about healthcare and my views on death in that death is a part of life, and that intervention can extend life but prolong suffering. This book is certainly food for thought.

What I discovered while reading is that through my life experiences, I would like a better death.

I grew up four grandparents in my life until my maternal grandfather passed away in 1997, my junior year of college. At the time I knew I was lucky to have had all four as long as I did, but his death hit me hard. It was my first, and of the four, the last I would have expected to go first. 

It was hard watching him go from a seemingly healthy, strong man who farmed 100 acres and would be in the fields from sun up to sun down to a shell of his former self. Of course I wanted him to live forever, but when it became apparent that he wasn't going to, I just hoped the end would come quickly and as painlessly as possible. He had already suffered enough.

Years later in 2009, I lost my paternal grandmother. She had health issues most of her life and had never been well as far as I could remember, but she soldiered on and maintained a busy lifestyle. At the end of her life she ended up in a hospital room, barely recognizable, and again a shell of her former self. She was fussy about her appearance and in all of her hospital stays over the years she wore pretty nightgowns, and even make-up. When I saw her during this last illness her appearance was quite lacking, and I knew if she knew that people saw looking this way she would be appalled. She was mostly unconscious, fed with a feeding tube. We knew the end was near and it was a high-anxiety waiting game. Horrible for all of us. Death was a relief.

Being older now, losing two grandparents in a hospital setting, seeing my mentally sharp maternal grandmother physically decline in a nursing home, and my paternal grandfather look more frail every time I see him, my views on death have altered. The slow medicine that Butler describes appeals to me, as granddaughter (a generation removed from having any real say as to the fate of her grandparents), as a daughter with senior citizen parents, as a woman marrying a man seven years older than herself, and as a mother who would do anything to spare her children the hard, end-of-life decisions. So yes, if I must day, and one day we all will. I want a better death, a death with dignity. 

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