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The newspaper of The Johns Hopkins University October 10, 2005 | Vol. 35 No. 6
Report Outlines Recommendations for Pediatric Palliative Care in Md.

By Lynn Schultz-Writsel
School of Nursing

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 and summarizes the results of the Maryland Pediatric Care Summit held last fall at the Johns Hopkins School of Nursing and hosted by the Johns Hopkins Harriet Lane Compassionate Care Program.

The summit findings focus around five central themes--denial of death, compassionate communication, continuity of care, public education and overcoming barriers--and reviewed current programs and services. From these themes, the more than 40 parents and health care professionals attending the summit developed eight recommendations for improving pediatric palliative care:

Make palliative care services family-centered.

Integrate palliative care with curative care.

Educate families, health care professionals and the public.

Develop innovative models of care delivery.

Improve facilities and space within hospitals to provide palliative and end-of-life care.

Develop pediatric-focused policies and practices.

Develop an interdisciplinary statewide model for the provision of pediatric palliative care from pre-natal through adolescence.

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.

Cynda Rushton, a School of Nursing faculty member and HLCC program director, organized the summit with Nancy Hutton, of the School of Medicine, and Elizabeth Reder and Barbara Hall, both of the Johns Hopkins Hospital Children's Medical and Surgical Center. "Above all," Rushton said, "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."


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