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Sci-Fi, Fantasy, Alternate History
History, Science & Current Affairs
Sci-Fi, Fantasy, Alternate History
Sci-Fi, Fantasy, Alternate History
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 nonlife 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.
On an autumn day in 2007, while I was visiting from California, my mother made a request I both dreaded and longed to fulfill. She'd just poured me a cup of tea from her Japanese teapot shaped like a little pumpkin; beyond the kitchen window, two cardinals splashed in her birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. She put a hand on my arm. "Please help me get your father's pacemaker turned off," she said. I met her eyes, and my heart knocked.
Directly above us, in what was once my parents' shared bedroom, my eighty-five-year-old father, Jeffreya retired Wesleyan University professor, stroke-shattered, going blind, and suffering from dementialay sleeping. Sewn into a hump of skin and muscle below his right collarbone was the pacemaker that had helped his heart outlive his brain. As small and shiny as a pocket watch, it had kept his heart beating rhythmically for five years. It blocked one path to a natural death.
After tea, I knew, my mother would help my father up from his narrow bed with its mattress encased in waterproof plastic. After taking him to the toilet, she'd change his diaper and lead him tottering to the living room, where he'd pretend to read a book of short stories by Joyce Carol Oates until the book fell into his lap and he stared out the sliding glass window.
I don't like describing what the thousand shocks of late old age were doing to my fatherand indirectly to my motherwithout telling you first that my parents loved each other and I loved them. That my mother could stain a deck, sew a silk blouse from a photo in Vogue, and make coq au vin with her own chicken stock. That her photographs of Wesleyan authors had been published on book jackets, and her paintings of South African fish in an ichthyologists' handbook. That she thought of my father as her best friend.
And that my father never gave up easily on anything.
Born in South Africa's Great Karoo Desert, he was a twenty-one-year-old soldier in the South African Army when he lost his left arm to a German shell in the Italian hills outside Siena. He went on to marry my mother, earn a PhD from Oxford, coach rugby, build floor-to-ceiling bookcases for our living room, and with my two younger brothers as crew, sail his beloved Rhodes 19 on Long Island Sound. When I was a teenager and often at odds with him, he would sometimes wake me chortling lines from The Rubaiyat of Omar Khayyam in a high falsetto: "Awake, my little one! Before life's liquor in its cup be dry!" On weekend afternoons, he would put a record on the stereo and strut around the living room conducting invisible orchestras. At night he would stand in our bedroom doorways and say good night to my two brothers and me quoting Horatio's farewell to the dying Hamlet: "May flights of angels sing thee to thy rest!"
Four decades later, in the house where he once chortled and strutted and sometimes thundered, I had to coach him to take off his slippers before he tried to put on his shoes.
My mother put down her teacup. She was eighty-three, as lucid and bright as a sword point, and more elegant in her black jeans and thin cashmere sweater than I could ever hope to be. She put her hand, hard, on my arm. "He is killing me," she said. "He. Is. Ruining. My. Life." Then she crossed her ankles and put her head between her knees, a remedy for near-fainting that she'd clipped from a newspaper column and pinned to the bulletin board behind her. She was taking care of my father for about a hundred hours a week.
I looked at her and thought of Anton Chekhov, the writer and physician who died of tuberculosis in 1904 when he was only forty-four. "Whenever there is someone in a family who has long been ill, and hopelessly ill," he wrote, "there come painful moments when all, timidly, secretly, at the bottom of their hearts long for his death." A century afterward, my mother and I had come to long for the machine in my father's heart to fail.
Excerpted from Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. Copyright © 2013 by Katherine Anne Butler. Excerpted with permission by Scribner, a Division of Simon & Schuster, Inc.
One of John Donne's Holy Sonnets opens with the famous injunction:
Death be not proud,
though some have called thee
Mighty and dreadful,
for thou art not so.
It is interesting to contemplate these words from the 1600s in the light of modern culture and even more so in the light of modern medicine. Today, death may indeed be mighty and dreadful for the many who die in the midst of, or despite, extreme end of life medical procedures. And while Donne exhorts the character Death to be humbled with those first four words of his sonnet, after reading Katy Butler's Knocking on Heaven's Door, these lines cause me, instead, to think about how I, and those closest to me, must take proactive steps to make it possible for us to be the proud ones at the time of death.
It's understandable if you are cringing at the thought of reading a whole book on this uncomfortable topic. And yes, I did review another title about death for BookBrowse (Happier Endings) earlier this year, but please don't turn away too soon. If you are moved by the drama of the everyday, if you appreciate a sustained narrative willing to follow its characters to their best and worst places, or if you have ever watched someone who suffers from a fatal illness, or the inevitabilities of aging, lose all quality of life due to the marvels of medicine - and then wondered if medicine always is so marvelous, you will want to give this book a chance.
In Happier Endings, Erica Brown related moving anecdotal stories to season the harsher facts of her manual on dying well. Here, in Knocking on Heaven's Door, Katy Butler engrosses us in one long, aching tale of her parents' fascinating relationship. The story of their real and complex marriage is organized and bordered by the slow death of Butler's father, and the devastation wrought when her mother trades her role of wife for caregiver. When Jeffrey Butler has a stroke at age 79, the author and her mother also enter a new phase of their contentious relationship, a mother needing but rebuffing her daughter's help, and a daughter struggling under the burden of responsibility and the guilt of her frustration in trying to manage families and lives on both coasts.
The book takes a difficult turn after Jeffrey's mental and physical abilities rapidly decline and a seemingly innocent pacemaker insertion in the recent past begins to haunt Butler - and eventually her mother - as they watch Jeffrey lose almost every skill and small pleasure that makes life worth living. Jeffrey's pacemaker could keep him alive long after he wants to be, after the rest of his body shuts down and his mind is irreparably damaged by more strokes. The deep moral and emotional struggle involved in this section is so real, so honest, that Butler succeeds in addressing one of the most delicate topics imaginable: when is the work of healing and saving finished and the time for the work of dying begun?
The journalist in Butler also comes out full and strong as she uncovers just what she and her mother are up against: sacred precedents of U.S. medicine, convoluted and illogical insurance and Medicare policies, an appalling lack of information about end of life alternative care options, and the uniquely fragile mental state of a full time spouse caregiver. Knocking on Heaven's Door is comprised of 7 parts. As a fascinating (albeit sad) comparison, part 6 deals with Butler's mother's death. Unlike her husband, she chooses to die on her own terms, and in the end, Butler seems to find some catharsis in studying and sharing the very different ways her parents died and in bearing witness to her mother's final triumph in choosing to die the way she wanted to.
Knocking on Heaven's Door can be read as a warning, an exposé, a love story or a domestic drama - it is all of these. It is a very important work, a literary case study in the modern American way of death.
Reviewed by Stacey Brownlie
In Knocking on Heaven's Door, Katy Butler describes a relatively new movement in modern healthcare termed "slow medicine," and advocates urgently for its principles to be applied in hospitals and specialists' offices across the United States. The slow medicine ethos mimics that of the slow food movement; taking time and applying restraint in care is favored over rushing into multiple and/or extreme medical measures. Slow medicine also favors a holistic, patient-centered approach versus the sometimes piecemeal, symptom-fixing focus of today's medical culture.
The principles of slow medicine are particularly applicable to geriatric care. Butler references Dennis McCullough's book, My Mother, Your Mother as an excellent source for those interested in improving the quality and compassion involved in end-of-life care. McCullough advocates taking the time to listen to patients, caregivers and families, and to consider quality as well as length of life. His book walks readers through eight stages of late life and death, giving examples of his own experience with his mother's passing as well as advice for addressing the process with a slow medicine approach.
Finding physicians who are willing to practice slow medicine is not only beneficial to the elderly or those in the final stages of fatal disease, however. Patients of all ages who need care due to confusing symptoms, chronic illness or psychological difficulties are good candidates for this type of care. Victoria Sweet, another successful author of narrative nonfiction, discovered the merits of slow medicine in her two decades working with many different kinds of patients at an almshouse in California. In a 2012 Wall Street Journal blog post, Sweet compares the role of a physician to that of a gardener: someone who nurtures and empowers. Her book well illustrates what doctor and writer Danielle Ofri distinguishes as the "practice of medicine" versus "the delivery of health care." Sweet, of course, acknowledges the need for fast medicine in acute situations, as would Katy Butler, who is careful in Knocking on Heaven's Door to apply these ancient, but counter-culture ideas to appropriate medical situations.
There are excellent and numerous caregiver resources provided by Katy Butler on her website.
First image: Rocking chair in Dennis McCollough's Dartmouth Medicine Magazine by artist Suzanne DeJohn
Second image: Slow Medicine logo for Italian Slow Medicine organization. The italian translates to sober, respect, right.
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