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.
This new resource for clergy, lay leaders, and health care providers will help them address end-of-life care in congregations, says director Richard Payne, a physician with many years experience caring for terminally ill patients.
“The model that Ray is creating and the toolkit we’ve developed for congregations make a powerful combination,” Payne says. “We’re giving children and families a better opportunity to find the support they need from the church, as well as from medical practitioners.”
An associate professor of pediatrics and Christian philosophy, Barfield grew up wanting to become a doctor. But in college, he discovered philosophy and literature and decided to become a philosopher/novelist.
He deferred graduate study in philosophy at Columbia University for a year of travel in Europe with a backpack full of books and his guitar.
“During that time I occasionally stayed with the father of a friend — a professor of obstetrics and gynecology in Tübingen, Germany,” says Barfield. “Those encounters reintroduced me to the thrill of medicine.”
During a six-week stay on a Greek island in the Aegean Sea, he decided to do both medicine and philosophy, starting with medicine.
“Now I practice medicine on one side of Duke’s campus, do Christian philosophy on the other side, and scribble novels secretly from 5 to 7 a.m. at home.”
Barfield began his work at Duke last semester with a flurry of one-on-one meetings across the university. In six weeks he sat down with more than 40 doctors, professors, nurses, administrators, chaplains, and others whose work intersects with the care of chronically or terminally ill children.
His goal was simultaneously simple and profound: to sow the seeds for a culture of care that focuses on the whole child rather than simply attacking disease.
“Physicians are devoted, committed, good people,” Barfield says. “But often they haven’t been given the tools to think about whole people.”
This manifests in many ways, he says. Sometimes children are given treatments without enough, or any, attention to relieving their pain. Overwhelmed by a huge number of patients, doctors may visit a child’s hospital room without really being present with the patient and family. And both physicians and parents often fail to see when a different kind of care, such as hospice, is needed.
“We become myopic in the hospital,” he says. “We think in terms of treating organ systems instead of how people experience illness. The way you achieve a good end of life is thinking about how to live well.”
Barfield, whose clinical work focuses on Duke Children’s Hospital & Health Center, has convened a variety of working groups to begin addressing some of the most important issues in improving the quality of care for children. Their topics include symptom management and reducing suffering, bereavement and end-of-life care, building bridges to hospice and churches, best practices in controlling suffering, improving communication among and between caregivers and families, and engaging parents to learn from their experiences.
A key to pursuing change is to work with those who spend the most time with patients, especially nurses, chaplains, and social workers.
“People often target culture change at the top of a system,” Barfield says. “But care begins at the bedside. That’s the place to start. That’s where there is energy and more impetus for change.”
Anthony Galanos, an associate professor of medicine in the division of geriatric medicine in the Duke University Medical Center, says Barfield’s approach is promising.
Galanos, who already had been working to establish a care service for chronically and terminally ill children at Duke, is now a close collaborator with Barfield.
“A pediatric quality of life program not only will make more practitioners aware of suffering, but also of living — and what the practice of medicine can mean for all practitioners, from the respiratory therapist to the nurse to the doc to the housekeeper,” Galanos says. “We all need a culture, a set of guidelines, to help us be the best we can be at caring for children.”
Tonya Armstrong, an adjunct assistant professor with ICEOL, adds that the pediatric quality of life program focuses on maintaining hope in constructive ways even while recognizing when a child is dying.
“Parents and caregivers really don’t want to reckon with the possibility that the child could die,” Armstrong says. “But there are still ways to engage in a conversation around hope. We don’t conflate hope and optimism. We ask ‘What is it that you hope for in the child’s final days?’”
Barfield models the practices that he hopes other physicians in the Duke system will embrace. He especially tries to encourage interns and other newer doctors to reflect more on how they can care for patients and be present with them — even though they have many patients and little free time. After he completes his rounds each week, Barfield makes a point of holding “teaching sessions” about engaging each patient and family. He also invites younger doctors to join him for some conversations with patients and their families.
“The new physicians are struggling with a lot, and there’s not as much room in their lives to think about the profound nature of working with sick, dying children,” he says. “But we can keep that conversation going.”
Barfield has spent a great deal of time considering what it means to work with dying children. Before coming to Duke Divinity School, he spent eight years working in oncology and bone marrow transplantation at St. Jude Children’s Research Hospital in Memphis, Tenn.
One patient in particular left a deep impression on Barfield.
Ali Mills was a 12-year-old girl with a big smile and a deep faith in God when Barfield met her at the hospital in 2004. She had survived neuroblastoma as a 5-year-old, and her family thought she had beaten the disease.
When the cancer returned, Ali underwent a bone-marrow transplant at St. Jude, and she eventually became Barfield’s patient.
Ali’s treatment went on for months, and Barfield found he was spending more and more time with her and her mother, Nancy.
Sometimes he would just come by to chat. Sometimes he would sing to Ali, who got a kick out of hearing Barfield sing the theme song to the SpongeBob SquarePants cartoon. Other times the conversation was more serious, focusing on the spiritual. Ali’s church eventually arranged for her to be baptized in her hospital room.
“Typically, doctors don’t serve as deep witnesses for their patients,” Barfield says. “They write orders, put out fires, and get ready for the next day. In 15 years as a physician I had never really witnessed suffering. For the first time I got a direct experience of what it’s like to suffer — not for the week that I’m on service, but week after week after week.”
Ali died shortly after her 13th birthday, her body damaged beyond repair first by the cancer itself and then by chemotherapy and other harsh treatments. Barfield spoke at her funeral in Memphis. Her photo, perpetually grinning and youthful, sits on his office bookshelf, a reminder of what she taught him.
Through this and other experiences at St. Jude, Barfield refined his thinking about how medical practitioners can work with families, clergy, and others to best support their patients. There he began to formulate the questions and ideas that he’s now exploring at Duke.
Barfield sees involvement of the church as natural.
“For centuries this was the church’s domain: frailty, illness, fear, and grief,” Barfield says. “In recent years the church has relinquished much of that to the hospitals.”
That conviction comes from his own faith life as well as his experience in the medical world. The son of a Presbyterian minister, Barfield has great respect for theological inquiry. His wife, Karen, is an Episcopal priest.
The opportunity to work with the Institute on Care at the End of Life, whose work crosses disciplinary boundaries and focuses on the intersection of spirituality and medicine, especially attracted him to Duke.
“The institute is working on tools to help clergy in training and in the field to take a greater role in helping people — even those with terminal illness — live well in hopeful communities,” Barfield says. “We can’t just rely on the hospital at the end of life. It’s about a continuum, with the hospital, hospice, home health care, and congregations. That’s how you ensure a good end to life.”