When Ray Barfield was a second-year resident at Eggleston Children’s Hospital in Atlanta, he learned how parents and doctors alike can lose sight of what’s most important when a child is terminally ill.
Barfield was part of a team at the hospital — affiliated with Emory University School of Medicine — treating the 3-year-old son of an Emory pediatrician and faculty member. The child was in the intensive care unit, suffering from a relapse of neuroblastoma, an aggressive childhood cancer that is nearly always fatal when it recurs.
Barfield watched as other doctors, especially the boy’s mother, proposed increasingly invasive treatments — even some that had proved ineffective against neuroblastoma. Meanwhile, the child was sullen, stuck in a sterile room, connected by uncomfortable leads and tubes to monitors, intravenous fluid bags, and other equipment. All the while he was running out of time.
“We were just desperate to treat this child,” Barfield says. “He was in pain because of what we were doing, and no one was dealing with the fact that he was going to die. Almost no one survives a relapse of neuroblastoma.”
Finally, the boy’s mother — a mentor to Barfield — realized that medical intervention wasn’t working. She took her son home, where he could spend his final hours with loved ones in familiar surroundings, his pain controlled by morphine.
“At home, his grouchiness went away,” says Barfield, who is affiliated with the Institute on Care at the End of Life (ICEOL) at Duke Divinity School. “He had two or three good days with his family, and then he died peacefully.”
It was a defining experience for Barfield, who last fall joined the faculty of the Divinity School and the Duke University School of Medicine and is developing a new model of pediatric care. Cooperating with physicians, nurses, faculty, and administrators from across the university, Barfield is working to help practitioners and families make better choices for children who are chronically or terminally ill.
In some cases, that means guiding families and physicians to the difficult conclusion that the time for hospitals, medicines, and surgeries is over. Sometimes a child is going to die, Barfield says. Accepting that can mean the difference between a death in which the child is comfortable at home, surrounded by family, friends, and spiritual support, or a death in a chaotic hospital environment, distracted by painful medical treatments.
His work also aims at involving congregations before a terminally ill child is just hours or days away from death. That way the church can provide much needed support, offering something as simple as prayer or as complex as helping the family choose the kind of care they want for their child.
Barfield’s work complements the ongoing efforts of ICEOL, which will soon release The Unbroken Circle: A Toolkit for Congregations Around Illness, End of Life, and Grief.