Congress Abstracts 2004

47

IMPLEMENTATION OF A PEDIATRIC PALLIATIVE CARE TRAINING PROGRAM. Rose Virani, RN, RNC, MHA, OCN^®, Betty Ferrell, PhD, FAAN, and Marcia Grant, DNSc, FAAN, City of Hope National Medical Center, Duarte, CA.

Despite major advances in pediatric palliative care, an estimated 2200 children will die of cancer in 2003. These children and all those diagnosed with pediatric cancer and their families could benefit greatly from key principles on palliative care such as pain and symptom management and improved communication. In 2002, the Institute of Medicine released a report titled “When Children Die: Improving Palliative and End-of-Life Care for Children and their Families.”

In response to this major national report, the End-of-Life Nursing Education Consortium (ELNEC), a Robert Wood Johnson funded project, developed and implemented a national educational curriculum for nurses in pediatric palliative care. The curriculum was developed and tested over 2001–2003. The curriculum focuses on 10 end-of-life content areas including an introduction to pediatric palliative care, special pediatric considerations, communication, ethical/legal issues, culture, pain, symptom management, care at the time of death, grief, and models of excellence.

The first national training program was hosted in 2003 and was attended by 100 nurse educators from 100 different pediatric settings representing 37 states. Participants included schools of nursing (33%), clinical educators (25%), specialty nursing organizations (8%), and CE Approvers (7%). Participants rated their current effectiveness in pediatric palliative care at 5.2 on a scale with 0 = not effective, to 10 = very effective. Participants also identified key barriers in teaching pediatric palliative care to staff including fears associated with dying, cultural beliefs, lack of educational resources, lack of staff time, and difficulties in determining prognosis of children. The ELNEC Pediatric Palliative Care Program will be implemented in the settings of the participants with follow-up goal evaluation at 6 and 12 months.

Improved pediatric palliative care can enhance the quality of life of children and their families as they face childhood cancer. Oncology nurses are key to ensuring improved quality care for this population.