APPENDIX A
STUDY ORIGINS AND ACTIVITIES

In Summer 1999, the Institute of Medicine’s Board on Health Sciences Policy recommended that IOM undertake a study to investigate care for children who die and their families. With funding from a mix of public and private agencies, the IOM began the study in Fall, 2000. The broad objectives were to 1) develop recommendations to strengthen the knowledge base for compassionate and effective care for dying children and their families; 2) inform health care providers, researchers, medical and nursing educators, state and federal policy makers, insurers, and others about these recommendations; and 3) encourage thoughtful discussion of what constitutes good end-of-life care for children and their families.

The IOM appointed a committee of 14 experts to oversee the study. That committee met 5 times between April 2001 and February 2002. Its task was to develop a report that

  • described the major causes and settings of death for children;

  • reviewed what is known about 1) the medical and other services provided to dying children and their families and 2) the education of physicians and other professionals who care for gravely ill children;

  • assessed the state of knowledge about clinical, behavioral, cultural, organizational, legal, and other important aspects of palliative and end-of-life care for children and their families;

  • examined methods for communicating information, determining family and child/patient preferences, resolving conflicts, and evaluating the quality of palliative and end-of-life care as experienced by children and their families; and

  • proposed a research and action agenda to strengthen the scope and application of the knowledge base for providing effective and compassionate care for children who die and their families.



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APPENDIX A STUDY ORIGINS AND ACTIVITIES In Summer 1999, the Institute of Medicine’s Board on Health Sciences Policy recommended that IOM undertake a study to investigate care for children who die and their families. With funding from a mix of public and private agencies, the IOM began the study in Fall, 2000. The broad objectives were to 1) develop recommendations to strengthen the knowledge base for compassionate and effective care for dying children and their families; 2) inform health care providers, researchers, medical and nursing educators, state and federal policy makers, insurers, and others about these recommendations; and 3) encourage thoughtful discussion of what constitutes good end-of-life care for children and their families. The IOM appointed a committee of 14 experts to oversee the study. That committee met 5 times between April 2001 and February 2002. Its task was to develop a report that described the major causes and settings of death for children; reviewed what is known about 1) the medical and other services provided to dying children and their families and 2) the education of physicians and other professionals who care for gravely ill children; assessed the state of knowledge about clinical, behavioral, cultural, organizational, legal, and other important aspects of palliative and end-of-life care for children and their families; examined methods for communicating information, determining family and child/patient preferences, resolving conflicts, and evaluating the quality of palliative and end-of-life care as experienced by children and their families; and proposed a research and action agenda to strengthen the scope and application of the knowledge base for providing effective and compassionate care for children who die and their families.

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The committee arranged for seven background papers, which are readable online (www.nap.edu) as Appendixes B through H. It also conducted a one-day meeting to hear views from family support and advocacy organizations and health care groups, and it invited written statements from additional organizations. In addition, the committee met for a half-day with parents whose children had died from or were living with life-threatening medical problems. Both meetings were open to the public. The agendas and participants are listed below as are additional groups that submitted written statements to the committee. Public Meeting Lecture Room, National Academy of Sciences 2101 Constitution Avenue NW, Washington, DC. Saturday, September 8, 2001 AGENDA 8:30 a.m. Welcome and Introductions Richard Behrman, M.D., Chair 8:40-9:20 a.m Panel 1 The Compassionate Friends, Inc. Patricia A. Loder Candlelighters: Childhood Cancer Foundation Ruth Hoffman National Organization of Parents of Murdered Children Jean Lewis 9:20-10:00 a.m. Panel 2 SIDS Alliance Deborah Boyd MISS - Mothers in Sympathy and Support Richard K. Olsen Hygeia Michael R. Berman, M.D.

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10:20-11:00 a.m. Panel 3 National Tay-Sachs & Allied Diseases Association Carol and Eric Zimmerman Support Organization for Trisomy 13/18 and Related Disorders Kenneth McWha, M.D. National Organization for Rare Disorders Diane Dorman 11:00-11:30 a.m. Panel 4 Make-a-Wish Foundation Michele R. Atkins 1:15-2:00 p.m. Panel 5 American Academy of Pediatrics (AAP) G. Kevin Donovan, M.D., M.L.A. Critical Care Section, AAP M. Michele Moss, M.D. 2:00-2:40 p.m. Panel 6 American Psychological Association/Society of Pediatric Psychology Daniel Armstrong, Ph.D. American Board of Pediatrics Ernest F. Krug III, M.D. 3:10-3:50 p.m. Panel 7 National Association of Children’s Hospitals and Related Institutions Susan Dull, R.N., M.S.N., M.B.A. National Hospice and Palliative Care Organization Stephen R. Connor, Ph.D. National Association of Pediatric Home and Community Care Dorothy Page, F.N.P., M.S.N.

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3:50-4:30 p.m. Panel 8 Pediatric Chaplains Network The Reverend Dane R. Sommer Child Life Council Christina Brown National Association of Social Workers Mirean Coleman, M.S.W. 4:30 p.m. Adjourn Additional groups submitting written statements American Academy of Hospice and Palliative Medicine American Association of Colleges of Nursing American Association of Critical Care Nurses American Board of Pediatrics Program Directors Committee American College of Emergency Physicians American Society of Pediatric Hematology/Oncology Children’s Oncology Group End-of-Life Subcommittee Hospice and Palliative Nurses Association National Association of State Emergency Medical Services Directors Organization of Neonatal-Perinatal Training Program Directors Public Meeting Room 150, National Academy of Sciences 2101 Constitution Avenue NW, Washington, DC. Sunday, September 9, 2001 PARTICIPANTS Winona Kittiko Atlanta, Georgia Rose and Gary Conlon Fremont, California Les Weil Milwaukee, Wisconsin Tina Heyl-Marinueau Weymouth, Massachusetts Deborah Dokken Chevy Chase, Maryland Rosario and Salvador Avila Palo Alto, California