A leader in pediatric palliative care, Bob Macauley became in 2008 one of the first physicians board-certified in the discipline. Ten years later, he published a definitive textbook: Ethics in Palliative Care: A Complete Guide (Oxford University Press).

Now Macauley — who completed his pediatric residency at The Johns Hopkins Hospital (1995–1998) and today holds the Cambia Health Foundation Endowed Chair in Pediatric Palliative Care at Oregon Health & Science University — has produced a searing tribute to the young patients and their families who have over the years shaped his professional and personal evolution.

Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul has been seven years and 30 drafts in the making, Macauley says. “I know this is a sad book in some ways, but there is great joy and meaning in these stories. And I want readers to experience the goodness and courage human beings are capable of, even in the face of unspeakable loss and pain.”

Macauley was inspired to write Because I Knew You after reading memoirs about adult palliative care. “I kept thinking how different pediatric palliative care is,” he says. While everyone would readily acknowledge a world in which adults endure difficult illness, he wanted people to realize that it happens often enough to children and their families “that we created a specialty dedicated to caring for them.”

As Macauley started thinking about patients who’d changed his life, he began reaching out to their parents. All but one agreed to participate. Another told him that the only thing worse than losing her child would be “that the world forgets him.” So the challenge of writing the book and finding a publisher “became a labor of love,” he says.

Thanks to feedback from his first trusted readers, Macauley wove more of his own story into each draft, including his rich professional education, his work as an Episcopal priest (he has master’s degrees in theology from Yale and Oxford), and his training and early career as a medical ethicist. And he writes for the first time about years of coming to terms with horrific abuse he suffered as a child, something he’d previously shared only with his wife, Pam, “and a few people I could count on one hand.”

Though he was nervous about sharing his personal story, Macauley said it has led to “some tender conversations,” and a new intimacy with family and friends. “It’s very freeing, actually,” he says. And he has come to see his own childhood trauma as part of what drew him in the first place to palliative care, with its emphasis on reducing the suffering of children, of letting even seriously ill kids be kids.

As Macauley recounts, that entails what some would consider rule-bending. Sneaking a beloved cat into a dying child’s hospital room. Moving heaven and earth to help a family take their child home for his or her final hours. Supporting a family in allowing their adolescent son with advanced cystic fibrosis to realize his dream of traveling to Europe to play drums with his punk rock band.

“I don’t know if I’d describe what we do as bending the rules as much as expanding the scope of the rules, because these parents are going to live with these memories for the rest of their lives,” Macauley says. “In pediatric palliative care, we are caring not just for the patient, but for their families, helping parents endure something no parent should have to experience.”