Eleven years ago, doctors told retired Wesleyan University professor Jeffrey Butler that he needed a pacemaker to ensure that his heart did not stop during hernia surgery.
So he was outfitted with the device, which kept his heart going, “while doing nothing to prevent his slide into dementia, incontinence, near-muteness, misery and helplessness.” A year earlier, Butler had suffered a devastating stroke.
Butler’s daughter, Katy, has now written an engrossing account of her father’s final seven years along with a sharp critique of technology-oriented medicine. Doctors no longer view the body as the “temple of the soul but a housing for organs to be removed, rejiggered and replaced like spare parts.”
After several years of worsening health, Jeffrey Butler was transported to a hospital hospice unit. The family pleaded with doctors to turn off the pacemaker, but they refused. When Butler died at age 85, the pacemaker continued to send signals to his lifeless heart.
The author and her mother, Amy, had agonized about the ethics of doing something to hasten Jeffrey Butler’s death and end his suffering. Physically exhausted and emotionally drained, Amy sometimes wished her husband “would die and set me free.”
Butler focuses on the skyrocketing cost of end-of-life care, the emotional conflicts that beset families and the crippling burdens carried by those who care for a dying relative. Some 24 million sons and daughters now look after aging parents, a number certain to rise.
The author is curious, open, conflicted and driven as she digs deeper into her family’s travails, as well as troubling trends in modern medicine. “Dying can be postponed, but aging cannot be cured,” she writes. Yet physicians are reluctant to let go, pushing families and patients to try one more procedure, one more test, despite risks.
Throughout her life, Katy Butler struggled to bridge the emotional gap between her parents and her. No matter what she did, she could never measure up.
The author resented the frequent trips she took from her home in California to her parents’ home in Connecticut. Sometimes she would return to California sooner than expected after another fight with her mother, “hating her and craving her love at the same time.”
Butler describes the incestuous relationships between Medicare, doctors and medical device companies. The government spends billions to cover the costs of device implants, while device manufacturers offer physicians lavish inducements to use their products.
The book describes the gradual decline — incontinence, loss of hearing, falls — of people in their later years. Butler zeroes in on the many causes of dementia, “a widespread, dreaded, fatal and incurable pariah condition, filled with shame,” comparable to AIDS in prior decades.
Although three-quarters of Americans say they would like to die at home, only one-quarter actually do so. Most die in hospitals, nursing homes or other facilities.
Butler praises “slow medicine,” a growing practice that began in Italy. It values restraint, calm and time to weigh the emotional and physical costs of medical treatment — in other words, not rushing into surgery, which can have serious, if unacknowledged, risks for older patients in fragile health.
Unfortunately, slow medicine does not pay well. Medicare readily reimburses doctors who perform costly procedures, while financially punishing — through stingy reimbursements — physicians who sit with patients and “take the time to explain the case for doing less.”
After Butler’s father died, her mother began to decline as well. Doctors wanted to surgically repair her heart, but she refused. “She was continent and lucid to her end,” the author writes with affection. “She took back her body from her doctors. She died the death she chose, not the death they had in mind.” She was 84.
Knocking on Heaven’s Door is a model of sensitive, eye-opening reporting and evocative writing. The book excels as a poignant memoir, as well as a credible evaluation of the unbending determination of many doctors to extend life, even when a dying patient is suffering and clearly wants to let go.
Bill Williams is a freelance writer in West Hartford, Conn., and a former editorial writer for The Hartford Courant. He is a member of the National Book Critics Circle and can be reached at billwaw@comcast.net.
Knocking on Heaven’s Door: The Path to a Better Way of Death, by Katy Butler; Scribner, 322 pp., $25