Secondary Logo

Journal Logo

How We Fail the Dying

Brown, Theresa, PhD, RN

AJN The American Journal of Nursing: June 2019 - Volume 119 - Issue 6 - p 61
doi: 10.1097/01.NAJ.0000559807.98811.2a
What I'm Reading
Free

Katy Butler illuminates the human costs of her father's medically delayed death.

Theresa Brown is a hospice nurse and a frequent contributor to the New York Times, as well as the author of The Shift: One Nurse, Twelve Hours, Four Patients’ Lives (Algonquin Books, 2015). Contact author: theresabrownrn@gmail.com. The author has disclosed no potential conflicts of interest, financial or otherwise.

Figure.

Figure.

“Knockin’ on Heaven's Door” is a Bob Dylan song, but I prefer the cover by Guns N’ Roses, which adds a rock inflection to what is basically a song about dying: “That cold black cloud is comin’ down / Feels like I'm knockin’ on heaven's door.” It's an apt title for Katy Butler's book, which details her father's slow decline after a stroke, and the relatively quick decline of her mother afterward. Butler's father had a pacemaker that no physician would agree to turn off, even as he became increasingly frail, and after witnessing her husband's suffering, Butler's mother chose to forgo lifesaving heart-valve surgery herself. Each of them, at different times, was knocking on heaven's door, and both were failed by their providers.

Butler's prose conveys a strong sense of mission regarding the need for better end-of-life care. As Butler states in the prologue, “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.”

Such costs are central to figuring out the best way to let dying patients actually die. The human costs of medically delayed death often go unacknowledged, but Butler is unflinchingly honest in portraying the burdens imposed—on both the patients and their family caregivers—by caregiving under such circumstances.

Butler's parents were in their late 70s when her father had his stroke. They were “energetic” people who ate well, exercised daily, and enjoyed general good health. But none of that protected her father from “a yellowish-white clump of fatty cells and microscopic chalky debris about the size of a baby aspirin” that lodged in one of the arteries going to his brain, blocking blood flow and depriving his brain of oxygen. And none of that protected her mother from the emotional and physical difficulties of caring for a newly disabled adult—the man who had been her husband for decades.

At the time of the stroke, Butler's parents lived in Connecticut, their four adult children in California. Family relationships were strained, as the children felt judged as academic failures by their father and hurt by their mother's emotional guardedness and sudden rages. Many families have similar challenges. But when a family member becomes suddenly and chronically ill, a caregiving network must be created out of such imperfect familial cloth. Butler took to flying in from California several times a year. As a freelance writer with no children of her own, she had that flexibility, but helping her mother wasn't easy. On one difficult evening, Butler heard her father being hit by her mother and “whimpering like an exhausted, demoralized, and beaten child.”

As Butler's father declined, the strain on Butler's mother worsened. They couldn't find a physician willing to deactivate her father's pacemaker so that his life could end naturally. One physician told Butler that turning the device off would be “like putting a pillow over your father's head,” although medical ethicists generally disagree, and legally Butler was entitled to request its deactivation. Her father died with the pacemaker still “delivering its tiny pulses to dead muscle.”

Soon after his death, Butler's mother learned that she needed open-heart surgery to replace two failing valves. Having seen the physicians’ inability to acknowledge her husband's decline, she refused all medical treatment. Butler writes, “She died of old age, sickness, and death…. She took back her body from her doctors. She died the death she chose.”

Knocking on Heaven's Door (Scribner, 2013) is a smart, sad, and ultimately energizing book. Six years after publication, the issues it raises remain pressing. Somehow in this country we have lost sight of these truths: everyone is mortal, and many of us will become increasingly frail before we die. Butler argues eloquently that our society must support failing patients through their natural dying, allowing both the patients and their committed but exhausted caregivers that essential, appropriate relief.

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.