A Good Death
“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 herself that she’s been through tragedy before and “this is not a tragedy.” Butler, back home in California after a grueling visit with her parents, wonders why her journalism career has stalled.
Both books shimmer with grace, lucid intelligence, and solace. An orderly shaves Butler’s father’s face with tenderness, and Wesolowska covers her son in kisses because “my time is limited. This is a mother’s love, distilled.” Nurses, home care attendants, and chaplains practice deep compassion. Butler, a Zen Buddhist, and Wesolowska, a lapsed Catholic, affirm dying as a sacred act and our lives as part of a larger whole. Both writers rage and weep, rail against injustice, and draw deep from the wells of community, nature, and rituals such as meditation and sitting shivah.
Dying brings sorrow and loss, yes, but also holds out the opportunity for courage and acceptance, for opening ourselves to the finality of life and the infinity of love.
In the end, that seems plenty good.
Slow medicine— a term coined by the Italian cardiologist Alberto Dolara in a medical abstract published in 2002 (and cited in Butler’s book)—advocates for medical care the same “back to basics” approach that the Slow Food movement has brought to cooking and nutrition. Try these titles to learn more about end-of-life care from the physician’s perspective:
My Mother, Your Mother: Embracing “Slow Medicine,” the Compassionate Approach to Caring for Your Aging Loved Ones, by Dennis McCullough, MD
God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine, by Victoria Sweet, MD
A History of the Present Illness: Stories, by Louise Aronson, MD
Face facts and educate yourself about rights and options. Having a living will is not enough.
Maintain good relationships with doctors. Insist that they communicate with each other.
Ask tough questions. Don’t wait until it’s too late to let loved ones know your preferences or to talk to aging parents or partners about the inevitable.
Get help. Too often, spouses and grown children (daughters, mostly) bear the brunt of nerve-fraying home care.
Learn about palliative care and hospice.
Lean on community, wherever you find it. Don’t go it alone.
Embrace ritual. If you have no formal religious affiliation, you can still create meaningful customs that bring comfort and relief.
Enlist the support of family and friends. Some will help more than others. Build a team you can rely on for specific tasks such as running an errand, helping around the house, or visiting for an hour or two.
To learn more about end-of-life options, look to the National Hospice and Palliative Care Organization (nhpco.org) and Medline Plus, a service of the US National Library of Medicine and the National Institutes of Health: nlm.nih.gov/medlineplus/palliativecare.html.