Is there a good way to die? Katy Butler examines that grim question in this deeply felt book, which uses the deaths of her parents as a way to examine the care we get at the end of life. Doctors and hospitals, she concludes, spend too much time and money keeping alive very sick, very old people, which does little except prolong everyone’s suffering. Far better, Butler says, is a more natural death, one that lets go when the body is ready to let go.
A practicing Buddhist, Butler does not advocate euthanasia, but rather opposes herculean efforts to keep people alive after their bodies and minds have worn out. Her case in point is Jeffrey Baker, her brilliant and beloved father, who suffered a stroke at age 79. He recovered, somewhat, but then other things started going wrong. At age 80, in advance of hernia surgery, he was fitted with a pacemaker, which kept his heart beating for the next six years — six years of strong, steady heartbeats while the rest of his body swiftly deteriorated. Over time, he became unable to speak. He could barely see, walk or feed himself. Dementia set in. He grew “incontinent, wobbly, sleeping for hours and virtually confined to the house.” It was agony for him and agony for his family. For nearly every day of those six years, his elderly wife was his 24-hour caregiver.
Eventually, Katy and her exhausted and sad mother tried to have the pacemaker deactivated, but doctors refused. Jeffrey’s suffering, and his family’s, must continue. By now, says Butler, “Medicine looked more like the enemy, and death the friend.”
By the time Jeffrey Butler does die — a slow, difficult death of pneumonia — Katy’s 84-year-old mother is also dying. Her heart begins to fail; she decides against treatment, and her death comes gradually — not easily, but on her own terms.
“She died of old age, sickness and death. She died of a heart calcified and broken by six years of nonstop caring,” Butler writes. “She died like a warrior. … She died the death she chose, not the death they had in mind.”
These personal journeys are only part of the book; Butler also traces the rise of specialized medicine and its elaborate machinery — pacemakers and defibrillators, organ transplants, feeding tubes and stents: what she calls the “business of lifesaving.” The result is doctors who, she says, treat the organ but not the patient. There is good and bad in all of this; a pacemaker, she acknowledges, is a “tiny little machine that had saved many a life,” but one that also “led my family to so much unnecessary suffering.”
You might not agree with all of Butler’s conclusions, but she is both thoughtful and passionate about the hard questions she raises — questions that most of us will at some point have to consider. Given our rapidly aging population, the timing of this tough and important book could not be better.
Laurie Hertzel is the senior editor for books for the Star Tribune. On Twitter @StribBooks