On Nov. 13, 2001, 79-year-old retired Wesleyan professor Jeffrey Butler woke early, meditated, took a brisk 2-mile walk, ate a healthy breakfast, attended a lecture, and suffered a massive stroke. He lived nearly eight years more, seven of them enabled by a pacemaker which, "kept his heart going while doing nothing to prevent his slide into dementia, incontinence, near-muteness, misery, and helplessness."
A year before Jeffrey's death, his wife, Valerie, asked their daughter, Katy, to help her get the pacemaker turned off and end her husband's and their family's suffering. "Knocking on Heaven's Door: The Path to a Better Way of Death'' is Katy Butler's beautifully written, honest, and instructive account of how she and her parents found themselves in this very painful situation — and about how others might avoid similar pain.
Based on a New York Times Magazine article subsequently included in "Best American Essays, 2011,'' "Knocking on Heaven's Door'' is part memoir, part medical history, and part self-help manual. Hybrids of nonfiction and memoir can be disjointed, the informational sections interrupting the flow of the personal story. But in "Knocking on Heaven's Door,'' such sections echo and reinforce Butler's story of her family's ordeal.
Butler uses her skills as a journalist to offer a richly detailed history of the development of the pacemaker, beginning with the use of an experimental shocking device on a moribund patient at Boston's Beth Israel Hospital in 1952. She notes that over the years, as medical advances have been made, attitudes about how those advances should be used have evolved. She argues that the discovery of each new drug or device fortified the idea that "[t]here was always something, no matter how ultimately futile, that a doctor or nurse could do."
Her father was the beneficiary of that optimism during World War II, when the wonder drug penicillin saved his life after a shrapnel wound led to gangrene. Decades later, Butler feels, her father was the victim of that same faith in medicine. Doctors never questioned, and never invited Jeffrey Butler and his family to question, the value of inserting the pacemaker that would prolong his misery so cruelly. After witnessing her husband's slow decline, Valerie Butler refused aggressive interventions and had a peaceful, digni-fied, and much less expensive death.
The book's last chapter, "Notes for a New Art of Dying," outlines stages at the end of life from "Fragility" through "Bereavement," a kind of Kübler-Ross formula for adult children caring for elderly parents. The chapter concludes with a generous list of advocacy and support organizations and other resources.
But Butler's advice is neither formulaic nor derived from pamphlets. Axioms such as "Don't be tyrannized by the notion of 'closure' " or — addressing the many daughters who take on the burdens of caring for parents alone — "Don't let brothers off the hook," spring from Butler's own experience.
Though Butler's advice is useful, and her challenge of our culture of denial about death necessary, it's her story that makes "Knocking on Heaven's Door'' a book those caring for dying parents will want to read and reread. She's honest about the disgust she felt toward her father's failing body, her rage at her mother's incessant criticism, her disappointment with her brothers' abandonment — and also about the fierce love that bound her to all of them.
Though a Buddhist, Butler is quite open about the fact that she did not spend the eight years during which her father was dying in a state of Zen equanimity. This openness is a gift. "Knocking on Heaven's Door'' will help those many of us who have tended or will tend dying parents to accept the beauty of our imperfect caregiving.
Dr. Suzanne Koven, who writes the "In Practice" column for the Globe, can be reached at firstname.lastname@example.org.