★ 2025-07-02
A doctor copes with the anguish of dying children in this searching medical memoir.
Macauley, a pediatrician and Episcopalian priest at the University of Vermont and the Oregon Health and Sciences University, recounts his career in pediatric palliative care, a specialty that focuses on easing the suffering of children with fatal illnesses. His experiences have yielded many heartbreaking—and sometimes infuriating—case studies. They include accounts of premature triplets for whom the parents demanded resuscitations even though, born after 22 weeks’ gestation, the babies had no chance of surviving; 8-year-old Tony, whose fundamentalist Christian mother refused pain meds for his excruciatingly painful treatment of Guillain-Barré Syndrome on the grounds that suffering is holy; Collin, an 18-year-old with cystic fibrosis and a punk rock band who almost beat the odds with a successful lung transplant, until immunosuppressive drugs made him prey to viruses that caused terminal cancer; and Kharma, a 12-year-old girl who seemed in perfect health until a rare cancer erupted and killed her in a few weeks. There’s also the occasional miracle, like Cora, born with a genetic disorder called trisomy 18 that was considered “incompatible with life”; rejecting doctors’ recommendations that she let the infant die, her mother Joy insisted that Cora get heart surgery and other treatments, and Cora is still going strong at age 11. Macauley weaves in his own story of surviving childhood molestation, which gave him “soul calluses” that insulated him from others’ suffering; ultimately, he notes, his patients helped renew his capacity to feel pain without letting it crush him. He also probes the contentious hospital politics surrounding pediatric palliative care (the author earned a reputation for siding with desperate parents instead of pressuring them to sign do-not-resuscitate orders).
Macauley infuses these vivid scenes from a doctor’s life with knotty reflections on the moral conundrums they pose. He grapples with the mystery of why God permits suffering and with the agonizing tension between parents’ demands for heroic interventions and the pointless suffering they can cause. The author paints a complex, conflicted, deeply human portrait of his practice, probing the confusion and awkwardness that often lie beneath his professional front of authoritative expertise, which he conveys in subtle, restrained prose: “I returned to Mary’s room, more because I’d promised I would than because I knew what to do or say. The creases around Tom’s eyes had deepened, almost as if he’d aged in the past few minutes in a desperate attempt to accelerate time so that his children would be old enough to survive.” There are passages here of nearly unbearable sorrow expressed in layers of evocative, haunting details: “Only minutes before, Kharma had been thrashing in her bed from a sudden spike in her pain. The nurse had given her more medication and pulled the drapes to darken the room, but nothing succeeded in calming her until Erin started singing softly:You are my sunshine, my only sunshine…” The result is a luminous meditation on the beauty of life, even in its most wrenching moments.
A mix of plangent emotion and deep insights into end-of-life medicine, delivered in limpid, moving prose.
