When death becomes technology’s slave
By Katy Butler.
One October afternoon three years ago while I was visiting my parents, my mother made a request I dreaded and longed to fulfill. She had just poured me a cup of Earl Grey from her Japanese iron teapot, shaped like a little pumpkin; outside, two cardinals splashed in the birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. “Please help me get Jeff’s pacemaker turned off,” she said, using my father’s first name. I nodded, and my heart knocked.
Upstairs, my 85-year-old father, Jeffrey, a retired Wesleyan University professor who suffered from dementia, lay napping in what was once their shared bedroom. Sewn into a hump of skin and muscle below his right clavicle was the pacemaker that helped his heart outlive his brain. The size of a pocket watch, it had kept his heart beating rhythmically for nearly five years. Its battery was expected to last five more.
After tea, I knew, my mother would help him from his narrow bed with its mattress encased in waterproof plastic. She would take him to the toilet, change his diaper and lead him tottering to the couch, where he would sit mutely for hours, pretending to read Joyce Carol Oates, the book falling in his lap as he stared out the window.
I don’t like describing what dementia did 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, Valerie, could stain a deck and sew an evening dress from a photo in Vogue and thought of my father as her best friend. That my father had never given up easily on anything.
Born in South Africa, he lost his left arm in World War II, but built floor-to-ceiling bookcases for our living room; earned a Ph.D. from Oxford; coached rugby; and with my two brothers as crew, sailed his beloved Rhodes 19 on Long Island Sound. When I was a child, he woke me, chortling, with his gloss on a verse from “The Rubaiyat of Omar Khayyam”: “Awake, my little one! Before life’s liquor in its cup be dry!” At bedtime he tucked me in, quoting “Hamlet”: “May flights of angels sing thee to thy rest!”
Now I would look at him and think of Anton Chekhov, who died of tuberculosis in 1904. “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 later, my mother and I had come to long for the machine in my father’s chest to fail.
Until 2001, my two brothers and I—all living in California—assumed that our parents would enjoy long, robust old ages capped by some brief, undefined final illness. Thanks to their own healthful habits and a panoply of medical advances—vaccines, antibiotics, airport defibrillators, 911 networks and the like—they weren’t likely to die prematurely of the pneumonias, influenzas and heart attacks that decimated previous generations. They walked every day. My mother practiced yoga. My father was writing a history of his birthplace, a small South African town.
In short, they were seemingly among the lucky ones for whom the American medical system, despite its fragmentation, inequity and waste, works quite well. Medicare and supplemental insurance paid for their specialists and their trusted Middletown internist, the lean, bespectacled Robert Fales, who, like them, was skeptical of medical overdoing. “I bonded with your parents, and you don’t bond with everybody,” he once told me. “It’s easier to understand someone if they just tell it like it is from their heart and their soul.”
They were also stoics and religious agnostics. They signed living wills and durable power-of-attorney documents for health care. My mother, who watched friends die slowly of cancer, had an underlined copy of the Hemlock Society’s “Final Exit” in her bookcase. Even so, I watched them lose control of their lives to a set of perverse financial incentives—for cardiologists, hospitals and especially the manufacturers of advanced medical devices—skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.