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, Jeffrey—a retired Wesleyan University professor, stroke-shattered, going blind, and suffering from dementia—lay 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 father—and indirectly to my mother—without 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.
* * *
How we got there is a long story, but here are a few of the bones. On November 13, 2001, when my father was seventy-nine and apparently vigorous, he suffered a devastating stroke. A year later—gravely disabled yet clear-minded enough to know it—he was outfitted with a pacemaker in a moment of hurry and hope. The device kept his heart going while doing nothing to prevent his slide into dementia, incontinence, near-muteness, misery, and helplessness. The burden of his care crushed my mother. In January 2007, when my father no longer understood the purpose of a dinner napkin, I learned that his pacemaker could be turned off painlessly and without surgery, thus opening a door to a relatively peaceful death. It was a death I both feared and desired, as I sat at the kitchen table while my mother raised her head from her knees.
Her words thrummed inside me: Please help me get your father’s pacemaker turned off. I’d been hoping for months to hear her say something like this, but now that she’d spoken, I was the one with doubts. This was a moral choice for which neither the Anglicanism of my English childhood nor my adopted Buddhism had prepared me. I shook when I imagined watching someone disable his pacemaker—and shook even more when I contemplated trying to explain it to him.
At the same time, I feared that if I did nothing, his doctors would continue to prolong what was left of my father’s life until my mother went down with him. My fear was not unfounded: in the 1980s, while working as a reporter for the San Francisco Chronicle, I spent six weeks in the intensive care unit of San Francisco General Hospital, watching the erasure of the once-bright line between saving a life and prolonging a dying. I’d never forgotten what I saw.
If my father got pneumonia, once called “the old man’s friend” for its promise of an easy death, a doctor might well feel duty-bound to prescribe antibiotics. If he collapsed and my mother called 911, paramedics would do everything they could to revive him as they rushed his gurney toward the emergency room.
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. Most of us say we don’t want to die “plugged into machines,” but a fifth of American deaths now take place in intensive care, where ten days of futile flailing can cost as much as $323,000. 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: miserable, damaged, and nearly incommunicado. I loved my mother and wanted her to have at least a chance at a happy widowhood. I felt like my father’s executioner, and that I had no choice.
I met my mother’s eyes and said yes.
* * *
I did not know the road we would travel, only that I’d made a vow. 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. After his death, I would not rest until I understood better why the most advanced medical care on earth, which saved my father’s life at least once when he was a young man, succeeded at the end mainly in prolonging his suffering.
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. I would contemplate the unintended consequences of medical technology’s frighteningly successful war on natural death and its banishment of the “Good Death” our ancestors so prized. 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: head-on.
* * *
My mother and I often felt like outliers, but I know now that we were not alone. Thanks to a panoply of relatively recent medical advances ranging from antibiotics and vaccines to dialysis, 911 systems, and airport defibrillators, elderly people now survive repeated health crises that once killed them. The “oldest old” are the nation’s most rapidly growing age group. 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. When is it time to say “No” to a doctor? To say, “Enough”? 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: a quarter of Medicare’s roughly $560 billion in annual outlays covers medical care in the last year of life. After my father’s death, I understood the human costs. After my mother’s death, I saw that there could be another path.
In our family’s case, the first crucial fork in the road appeared six and a half years before my father died, in the fall of 2001. It began with a family crisis, an invitation to a distant daughter to open her heart, and a seemingly minor medical decision: the proposed installation of a pacemaker in the aftermath of a catastrophic stroke.
The Path to a Better Way of Death
Knocking on Heaven's Door
The Path to a Better Way of Death
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.
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Reading Group Guide
Topics & Questions for Discussion
1. Where do you draw the line between saving a life and prolonging a dying? Has your family included a member who “lived too long”? Do you think it is okay to “let nature take its course”? How do you distinguish that from suicide?
2. How did you feel about Valerie Butler’s choice? Was it brave, or not? Do you think it caused her children more or less suffering than her husband’s death? What were the blessings and drawbacks of her unexpectedly rapid death? What were the advantages and disadvantages of her husband’s protracted death, from the point of view of his survivors?
3. Butler writes, “I don’t like describing what the thousand shocks of late old age were doing to my father—and indirectly to my mother—without telling you first that my parents loved each other and I loved them” (p. 2). In this passage she drops her journalistic point of view and turns directly to the reader, using the word “love.” Discuss Butler’s relationship to each of her parents and their relationship with each other. How does each change througho see more