Child/Adolescent Health

Collaboration between hospital and community palliative care services can improve care for dying children

Most children who die from complex chronic conditions are hospitalized in the months or weeks leading up to their deaths, but a growing number of them are returning home to die. Yet most hospice/home care agencies are oriented toward the care of dying adults, and don't know how to help with the end-of-life care of these children and their families. Collaboration between hospital and community palliative care services could improve the end-of-life care of these dying children, notes the Pediatric Advanced Care Team (PACT) at The Children's Hospital of Philadelphia.

The PACT developed a Partners in Pediatric Palliative Care Program (PPCP), which fosters joint ventures between a palliative care service located in the hospital and a wide range of hospice and home care agencies in five States. The PACT consists of eight physicians from diverse pediatric subspecialties, two nurse coordinators, a social worker, two child life specialists, a bereavement counselor, a psychologist, and a chaplain. They consult with the patient, family, and/or health care team and facilitate high-quality care during transitions from hospital to home and vice versa.

From 2003 to 2005, the PACT consulted on the care of 212 infants, children, and adolescents. Half of the families of the patients who died (67 percent) had engaged hospice services, and 78 percent of those who received home-based hospice service died at home.

The PPPC program was launched to provide education and networking opportunities and discuss issues of mutual concern for hospice and hospital staff. In recent evaluations of the program, community-based persons caring for dying children felt it helped them learn about caring for children with complex chronic conditions, how to provide pain and symptom management, how to talk to families about death or dying and be confident doing so, and provide grief and bereavement services.

The study was supported in part by the Agency for Healthcare Research and Quality (HS00002).

More details are in "Partners in pediatric palliative care: A program to enhance collaboration between hospital and community palliative care services," by Jean M. Carroll, B.S.N., Gina Santucci, M.S.N., Tammy I. Kang, M.D., and Chris Feudtner, M.D., Ph.D., M.P.H., in the June/July 2007 American Journal of Hospice & Palliative Medicine 24(3), pp. 191-195.

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