When Medical Technology Diminishes Quality of Life

One woman faces the wrenching moral decision of whether to prolong her father's life with medical technology at the cost of the entire family’s quality of life.


| September 2013



Knocking on Heavens Door Book Cover

In “Knocking on Heaven’s Door,” Katy Butler ponders her parents’ desires for “Good Deaths” and the forces within medicine that stood in the way.

Cover Courtesy Scribner

Knocking on Heaven’s Door (Scribner, 2013) by Katy Butler is a map through the labyrinth of a broken medical system based on her experiences between choosing between sustaining life with medical technology and assessing her father’s quality of life. It will inspire the difficult conversations we need to have with loved ones as it illuminates the path to a better way of death. The following excerpt is from the prologue.

Medical Technology

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.

tara
9/27/2013 4:38:37 PM

My father had a massive heart attack when he was 75 years old, and he was "saved" from death by a modern medical technological process that cost approximately half a million dollars (his doctors said that this kind of heart attack would normally kill someone half his age). He lived on with the progression of his Parkinson's disease, as well as glaucoma (which resulted in him becoming legally blind), severe arthritis, and a host of other problems. He ended up in a wheelchair with no energy to do anything other than eat, shower, use the toilet, and go to his doctors. He also began to suffer from Parkinson's-related dementia. He then suffered stroke which, combined with his Parkinson's, turned his brain into the equivalent of (in the doctor's own words) "scrambled eggs". Nevertheless, he was put on a feeding tube and hospice care. He died at the age of 80 in the most pitiful state, not being able to talk or even recognize my sister or me. Very often, I have wondered if, without this "modern technology", it would have been better for him if he had died of that heart attack at 75. That is what would have happened 30 or 40 years ago, and you'd have to present an iron-clad argument against it to convince me that the fate he actually suffered was better. Tara Singletary Metairie, Louisiana