This application seeks support to convene a national state-of-the-art conference on family-centered pediatric palliative care in order to: - review the evidence concerning effective methods to alleviate symptoms and provide support for children with chronic and life-threatening illnesses and their families; - critically examine future research directions in family-centered pediatric palliative care; - expose an interdisciplinary cohort of clinicians who care for children to state-of-the-art knowledge and skills in six domains central to pediatric palliative care; and - present model, innovative programs in quality improvement and institutional change in pediatric palliative care. The conference is an integral part of a multi-year project to respond to the unmet needs of the 54,000 children who die each year in the United States and their families as well as many others suffering from chronic and life threatening illnesses. Recent reports from the Institute of Medicine and others have documented the need for significant work in pediatric palliative care including clinical, organizational, educational, and psychosocial aspects of the field. Our initiative has analyzed the needs of children and families, developed research and quality improvement tools, collaborated with children's hospitals throughout the U.S. to develop innovative programs, documented the current knowledge base, developed and field tested curricula, and identified research priorities in pediatric palliative care. This has resulted in the need to disseminate this information through a national conference in order to take the next steps to improve family-centered pediatric palliative care in the U.S. This will be accomplished under the auspices of an outstanding group of national organizations (The National Association of Children's Hospitals and Related Institutions, The New York Academy of Medicine, The Society of Pediatric Nurses, The Association of Medical School Pediatric Department Chairs, and The Education Development Center) with the direction of a multidisciplinary organizing committee. The conference is planned to take place on November 6-7, 2003 in New York City at The New York Academy of Medicine. Post-conference plans include the sponsoring organizations promoting effective clinical, educational and research activities in this field. This will include regional training programs, faculty development, technical assistance to hospitals and pediatric departments, and encouragement or research.
