After Katy Butler’s father suffered a stroke at age 79, doctors installed a pacemaker, keeping his heart beating but doing nothing to prevent his six-year slide into dementia, near-blindness, and misery. In her memoir, Knocking on Heaven’s Door: The Path to a Better Way of Death, Butler shares her family’s story, familiar to millions of Americans caring for aging parents, and shows how “Slow Medicine” could be the answer we’re all looking for.
My father could not easily follow an animated dinner-table conversation then, much less talk with a near-stranger about how he wanted to die, or live. And in my parents’ eyes, I was just a daughter with problems of her own on a faraway coast—struggling to earn a living, growing warily closer to a new man, and negotiating a sometimes fraught relationship with his two nearly grown sons, who were accustomed to having the run of their father’s house.
My mother was not a compliant or stupid woman. She wasn’t enthusiastic about the pacemaker and she knew that their internist, the trusted Dr. Fales, opposed it. But she was anxious to get my father out of pain and was no expert on high-tech medicine. In the course of her long life, she usually believed what doctors told her, and on the whole it had worked out well. She grew up in times when almost all doctors practiced what the Italians had taken to calling Slow Medicine: they made house calls, earned incomes roughly equal to those of their patients, served the same families for decades, didn’t get gifts from drug and device salesmen, and didn’t prescribe technologies they indirectly profited from. She was in her thirties in the 1950s when my brothers and I were inoculated with Jonas Salk’s polio vaccine, developed for the benefit of all humankind and never patented, saving living by the millions. She knew medicine had changed since then. She once said to me, “The whole fifteen-minute game—it’s a joke, sweetheart, it’s not medicine!” But she wasn’t the type to come to an appointment with an Internet printout.
And so the system rewarded nobody for saying “no” or even “wait”—not even my frugal, intelligent, Consumer Reports-reading mother. Medicare and supplemental insurance covered almost every penny of my father’s pacemaker even though they would not cover a cent of a temporary truss that might have bought us time for an informed decision. My mother asked more questions and was given more government-mandated consumer information when she bought a new Camry a year later.
There was more. There is a school of thought that maintains that if patients educate themselves and sign all the right forms, they’ll escape the unhappy medical outcomes they dread. But my mother was not just a medical consumer. She was an agonized, exhausted, and still-hopeful wife. She had told my father that he was not to die first and leave her alone. She saw his stroke as a setback to overcome, not as the first loosening of a mooring on a boat that would sail out to sea without her and sink. “I still had hope we could improve things. I hadn’t really taken in that once you’ve had one stroke, you’re likely to have another.”
Dr. Fales watched from the sidelines He knew there were things worse than dying. He own father had recently been diagnosed with Alzheimer’s disease. “If it had been my dad, I’d have talked to my mom and said, “It’s time,” he would tell me later, after both my parents were dead. “The pacemaker is going to extend his life into a period when he has no reason to live. Enough is enough. Let nature take its course.”
But my mother did not call Dr. Fales.
She shrugged and said yes. The pacemaker surgery was scheduled for the following week, and she called to let me know. I bit my lip. It is one thing to silently wish that your father’s heart might fail. It’s another to actively abet his death by opposing surgery.
The effects of these decisions rippled through our lives for the next six years.
Author photo: Cristina Taccone
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