Nearly 1,000 of the more than 40,000 people who die each year in Maryland are children under 18. With almost every one of those deaths, a pediatric palliative care program can offer support to the child and to the family through the dying process and beyond.
A recently released comprehensive report, “Challenges and Opportunities to Improve Pediatric Palliative Care in Maryland,” makes recommendations for improving the care of dying children in Maryland and summarizes the results of the Maryland Pediatric Care Summit held last fall at the Johns Hopkins University School of Nursing (JHU SON) and hosted by the Johns Hopkins Harriet Lane Compassionate Care Program (HLCC).
The summit findings focused around five central themes: denial of death, compassionate communication, continuity of care, public education, and overcoming barriers; and reviews current programs and services pertinent to those themes. From these themes, the more than 40 knowledgeable parents and healthcare professionals attending the summit developed eight recommendations for improving pediatric palliative care in Maryland:
1. Make palliative care services family-centered.
2. Integrate palliative care with curative care.
3. Educate families, healthcare professionals, and the public.
4. Develop innovative models of care delivery.
5. Improve facilities and space within hospitals to provide palliative and end-of-life-care.
6. Develop pediatric-focused policies and practices.
7. Develop interdisciplinary, state-wide model for the provision of pediatric palliative care from pre-natal through adolescence.
8. Establish resource networks for professionals and parents.
At the summit, the participants also chronicled the state of pediatric palliative care in Maryland; identified gaps in the clinical care, financing, and policy that affect the care of dying children and their families; and created a model of parent-professional cooperation. These same advocates have been instrumental in establishing the Pediatric Palliative Care Coalition of Maryland, which is now refining action steps to accomplish the recommendations and is exploring other opportunities for collaboration and education.
JHU SON faculty member and HLCC program director Cynda Rushton, DNSc, RN, FAAN, organized the Summit with Nancy Hutton, M.D., JHU School of Medicine, and Elizabeth Reder, and Barbara Hall of the Johns Hopkins Hospital Children’s Medical and Surgical Center. Dr. Rushton noted, “Above all, this summit demonstrated that family-centered, integrated, and interdisciplinary pediatric palliative care is the preferred model of care. It works with—not instead of—other treatments. We hope to bring to Maryland innovative programs that will deliver that model of care—from the time of diagnosis and for the benefit of both the child and the family.”
For media inquiries, contact:
Lynn Schultz-Writsel, JHU School of Nursing, 410-955-7552, Vernick Goldberg, Johns Hopkins Children’s Center, 410-516-4958, [email protected][email protected]