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.”