A Good Death
Two new memoirs examine the way we die—and reflect on how we can do it better.
“Once upon a time,” Katy Butler writes in Knocking on Heaven’s Door , “we knew how to die.” We gathered family and friends, leaned in to time-honored rituals, put our affairs in order, and said good-bye—usually at home and under the care of a doctor we’d known for years.
These days, though, while 75 percent of Americans prefer to die at home, only a quarter actually do. Most of us languish in hospitals, hooked up to machines that keep us alive when our bodies might be all too ready to go, monitored by specialists who learn our names by reading our charts and who receive higher Medicare reimbursements for costly last-ditch procedures than for discussions of palliative options.
How did we get here? And can we find our way back?
Butler’s book offers no easy answers. Neither does Monica Wesolowska’s Holding Silvan . These memoirs give something more valuable. Thirty-seven years after Karen Ann Quinlan’s father won the legal right to discontinue all extraordinary means of life support, they show the dimensions of a good death in wrenching situations.
At 79, Katy Butler’s father suffered a stroke. During the next six and a half years, as she traveled back and forth across the country, his mind deteriorated. After doctors refused to turn off the pacemaker that had kept his heart pumping long after he “no longer understood the purpose of a dinner napkin,” Butler enlisted the help of palliative care advocates and bioethics specialists. “I wanted him to die because I loved him,” Butler writes, and finally, in a hospice unit—Butler and her mother knew by then not to call 911—he did. Barely a year later, Butler’s mother chose another path. After suffering as her husband’s primary caregiver, she turned down surgery and met death “head-on.” She died on her terms—“too soon for my tastes,” Butler writes, “but not for hers.”
Monica Wesolowska, too, must untangle her wishes for herself from what she wants for a loved one—in her case, her firstborn son, Silvan. After learning that he has sustained severe brain damage at birth, Wesolowska and her husband, David, go before a hospital ethics committee. There, Wesolowska, her maternal love “rearing up . . . on hind legs like a bear with claws extended,” makes the case to let her son die. Because Silvan cannot—and will likely never—swallow properly, this means withholding food. “If I love him,” Wesolowska writes, “I will let him go.” And she does—at home, unhooked from tubes, in her arms. “All he’s known in life is love,” and she and David keep it that way.
These books take an unflinching look at dying in all its complexity. A wife “clouts” her infirm husband, and a newborn’s seizures look like “cute little fist curls.” Friends say the wrong things; siblings stay away. One physician rips up a patient’s Do Not Resuscitate order, and another complains that a dying baby “is really hard on the staff.” After Silvan’s first EEG, Wesolowska bargains with