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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
Representative terms from entire chapter:
national organization
