NEW YORK - April 22, 2004 - Approximately 50,000 children die and 500,000 children cope with life-threatening conditions each year in the United States, according to an article in the current New England Journal of Medicine.

Children with life-threatening conditions and their families need comprehensive care addressing the mind, body and spirit to relieve their pain and suffering, says Joanne M. Hilden, M.D., chair of the Department of Pediatric Hematology/Oncology and medical director of Pediatric Palliative Care at The Children's Hospital at The Cleveland Clinic. Dr. Hilden, a Faculty Scholar of the Open Society Institute's Project on Death in America (PDIA), is a co-author of the New England Journal of Medicine review article. Bruce Himelstein, M.D., and David Weissman, M.D., also PDIA Faculty Scholars, co-authored the article.

"Pediatric palliative care is an essential component of any treatment plan for all seriously ill children, whether or not they are dying, and for their families and the community before and after death," said Dr. Hilden, who also has co-written a guidebook for parents titled Shelter from the Storm: Caring for a Child with a Life-Threatening Condition.

"This care is most successful when delivered by a well-trained, multidisciplinary medical team," Dr. Hilden said. "This team should include generalists and specialists equipped to treat the child's illness, as well as child psychologists and child life specialists."

Dr. Hilden said she hopes the New England Journal of Medicine article serves as a resource for parents, physicians and health care facility staff who may not know the full benefits of access to an established pediatric palliative care team. Since joining The Cleveland Clinic, Dr. Hilden has founded and co-chairs the Children's Oncology Group (COG) Subcommittee on Palliative Care, and began the Children's Hospital Pediatric Palliative Care Service, Helping Hands Team.

While research evaluating the quality and effect of pediatric palliative care is rare, she said, clinical programs have been developed across the country over the past few years, and efforts continue to expand these services. Still, the presence of a designated pediatric palliative team is a luxury in most health care settings at this time, and leading children's hospitals are in the process of developing them, Dr. Hilden said.

Pediatric palliative care should provide long-term, continuous care for children with chronic and/or life-threatening illnesses, Dr. Hilden said. This care should strive to improve the quality of life for young patients and their families by advocating for patient comfort, dignity and choice throughout treatment, regardless of the child's medical outcome.

The Project on Death in America (PDIA) was a $45 million grantmaking program of the Open Society Institute. PDIA's mission was to understand and transform the culture and experience of dying and bereavement. From 1994 to 2003, PDIA created funding initiatives in professional and public education, the arts, research, clinical care, and public policy. PDIA and its grantees have helped build and shape this important and growing field, and have helped place improved care for the dying on the public agenda.

The Open Society Institute, a private operating and grantmaking foundation, is part of the network of foundations, created and funded by George Soros, active in more than 50 countries around the world.

OSI's U.S. Programs seek to strengthen democracy in the United States by addressing barriers to opportunity and justice, broadening public discussion about such barriers, and assisting marginalized groups to participate equally in civil society and to make their voices heard. OSI U.S. Programs challenges over-reliance on the market by advocating appropriate government responsibility for human needs and promoting public interest and service values. OSI U.S. Programs supports initiatives in a range of areas including access to justice for low and moderate income people; judicial independence; ending the death penalty; reducing gun violence and over-reliance on incarceration; drug policy reform; inner-city education and youth programs; fair treatment of immigrants; reproductive health and choice; campaign finance reform; and improved care of the dying.