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 latergravely disabled yet clear-minded enough to know ithe 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 pacemakerand 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 Iand even my dying fatherwould 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.
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.
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No Man's Land
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