Pediatric Palliative Care: Sharing our expertise to benefit more children with serious illness

A child’s serious or life-limiting illness can be a difficult time for the entire family. Pediatric palliative care is an interdisciplinary approach to helping both cope with complicated medical problems. It includes support for understanding a child’s prognosis, treatment and possible side effects and coordinating alternative therapies, such as massage and acupuncture.

Children’s National PANDA team has a robust Palliative Care team, but not all pediatric institutions do. Nor is there a universal model or training for hospice nurses with little to no experience in delivering end-of-life care to children.

Deborah Fisher, a pediatric nurse practitioner on our PANDA team, wants to bridge that gap in care. Cambia Health Foundation is helping her make this possible. The foundation in January recognized Fisher’s emerging leadership in this field by naming her as one of 12 Sojourn Scholars. She will receive a two-year grant and leadership support to help her expand the expertise of adult hospice nurses to address the specific needs of young patients with serious illnesses.

“I strive to be a transformational leader by bringing a standardized curriculum that will give adult hospice providers confidence and competence in providing this care. The Sojourns Scholars Leadership Program will prepare me to transform community-based pediatric palliative care.”

Fisher will develop a curriculum that emphasizes the differences and strengthens the similarities between adult and pediatric palliative care. She will work with experienced pediatric palliative care mentors to transfer learned knowledge into practice. Her project also seeks to raise the visibility of pediatric palliative care needs.

During Fisher’s more than 30 years in pediatric nursing, including 20 years as an advance practice nurse, she has gained insights about how to transform palliative care.

At Virginia Commonwealth University Health System, she developed and implemented a Pediatric Palliative Care Service and created an online pediatric pain module to be included in a larger pain curriculum later adopted by Virginia’s Department of Health. At Children’s National, she lobbied for the Palliative Care Hospice Education and Training Act of the Patient Quality of Life Coalition. This national group of more than 25 organizations promotes public policies that improve care and quality of life for adults and children facing life-limiting illnesses.

 “I am grateful for Cambia Health Foundation’s support,” says Fisher. “I look forward to making the meaningful contributions that will alleviate challenges within the palliative care system so that children and their families can achieve the best quality of life.”

To learn how you can help support our PANDA Palliative Care Team at Children's National, please contact Morgan Daley, PANDA Program Lead, at 202.476.3479 or [email protected].