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Suggested Citation:"Appendix A: Study Origins and Activities." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
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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.

Suggested Citation:"Appendix A: Study Origins and Activities." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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.

Suggested Citation:"Appendix A: Study Origins and Activities." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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.

Suggested Citation:"Appendix A: Study Origins and Activities." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×

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

Suggested Citation:"Appendix A: Study Origins and Activities." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×
Page 445
Suggested Citation:"Appendix A: Study Origins and Activities." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×
Page 446
Suggested Citation:"Appendix A: Study Origins and Activities." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×
Page 447
Suggested Citation:"Appendix A: Study Origins and Activities." Institute of Medicine. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press. doi: 10.17226/10390.
×
Page 448
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The death of a child is a special sorrow. No matter the circumstances, a child’s death is a life-altering experience. Except for the child who dies suddenly and without forewarning, physicians, nurses, and other medical personnel usually play a central role in the lives of children who die and their families. At best, these professionals will exemplify “medicine with a heart.” At worst, families’ encounters with the health care system will leave them with enduring painful memories, anger, and regrets.

When Children Die examines what we know about the needs of these children and their families, the extent to which such needs are—and are not—being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more. It argues that taking these steps will improve the care of children who survive as well as those who do not—and will likewise help all families who suffer with their seriously ill or injured child.

Featuring illustrative case histories, the book discusses patterns of childhood death and explores the basic elements of physical, emotional, spiritual, and practical care for children and families experiencing a child’s life-threatening illness or injury.

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