EDC Launches National Initiative for Children with Life Threatening Conditions

EDC has received $1.5 million in start-up funding to improve care for children with life-threatening conditions and their families. The initiative, Enhancing Family-Centered Care for Children Living with Life Threatening Conditions, coincides with the recent release of an Institute of Medicine (IOM) report on end-of-life cancer care, which calls for a stronger focus on relieving children’s pain and suffering, as well as physician education and family support. Seven hospitals are participating in the initiative as pilot sites.

According to Mildred Solomon, director of the new initiative and the Center for Applied Ethics & Professional Practice at EDC, “Working closely with outstanding children’s hospitals and strong national partners, we intend to generate new programs and services to meet the challenges of children living with life-threatening illnesses and their families. Whereas the IOM report focuses specifically on pediatric cancer care, our goal is to improve the care of children with a wide variety of life-threatening conditions, including traumatic injury, complications of prematurity, congenital anomalies, AIDS, as well as cancer—which together, represent the major causes of childhood death.”

EDC will also develop new curriculum materials on clinical skills for physicians, nurses and other health care professionals caring for gravely ill children and their families. Current funding will support the development of the first two modules, on pain and symptom management and family involvement in decision making. As additional funders join the initiative, other modules will cover ethics and law, communication skills, and bereavement. Following pilot testing, the materials will be disseminated to children’s hospitals nationally with the assistance of the National Association of Children’s Hospitals and Related Institutions (NACHRI), which will also encourage its member organizations to identify pediatric palliative care “champions” and foster innovations within the broader pediatric health-care community.

Current funders are The Nathan Cummings Foundation and The Open Society Institute’s Project on Death in America, both based in New York City, and a third, anonymous, foundation donor. Andrea Kydd, program officer at The Nathan Cummings Foundation, explains, “Childhood death and life-threatening illness have been taboo subjects in this country for too long. We hope that our actions will spur other funders to join with us. This is just the beginning.”