The Human Touch

When Deborah Dokken gave birth prematurely to her daughter Abigail, mothering took place in a neonatal intensive care unit, where her daughter struggled to survive.

“We knew the type of day it was going to be as soon as we saw which nurse was assigned to Abigail,” recalls Dokken. “One nurse would send off signals that we’d make her job easier if we stayed out of the way. But another would make the experience quite different. She encouraged us to be a parent in any way possible. We could reach out our hand and stroke our baby’s head. That nurse told me it made a difference, that our daughter knew we were there, that she knew I was her mom.”

Abigail died when she was only six months old, but Dokken turned her experience into action and now works with EDC’s Initiative for Pediatric Palliative Care, a national project working to improve care for children with life-threatening conditions. About 55,000 children die in the United States every year.

Using EDC’s original curriculum, program staff work with health care professionals on building relationships, communication skills, and “reflective” practices. The five-module curriculum covers a variety of topics, including engaging with children and families, relieving pain and other symptoms, analyzing ethical challenges in pediatric end-of-life decision- making, responding to suffering and bereavement, and improving communication and strengthening relationships. It is available free of charge through the project’s Web site (below).

EDC hosts retreats for hospitals, hospice and home care organizations, and community coalitions, assisted by the true experts—parents who have experienced the life-threatening illness or death of their child.

“Medical care for seriously ill children is often lacking in what may be called ‘the human touch,’” says Project Director David Browning of EDC’s Center for Applied Ethics. “For physicians, hearing first-hand accounts from family members about their experiences has been transformative, and they carry these responses back to their own institutions to share with others.”

As one physician revealed, “I was so surprised and truly blessed by what they brought to our learning and to my memory of this retreat. I will never be or teach the same.”

EDC has conducted 11 such sessions in collaboration with children’s hospitals around the country, the most recent held this spring in Portland, Maine.