APPENDIX I
COMMITTEE BIOGRAPHICAL STATEMENTS

Chair

Richard E. Behrman, M.D., J.D., is Executive Chair, Federation of Pediatric Organizations, Education Steering Committee. He serves as Consultant to the Lucile Packard Foundation for Children’s Health and Sr. Advisor for Health Affairs at the David and Lucile Packard Foundation. He is also Clinical Professor of Pediatrics at Stanford University and the University of California, San Francisco. He previously held positions as Chairman of the Boards of Lucile Packard Foundation for Children’s Health and the Lucile Packard Children’s Hospital and Director of the Center for the Future of Children. Prior to holding these positions, he served as Vice President of Medical Affairs and Dean of the School of Medicine at Case Western Reserve University. Dr. Behrman also served as Professor and Chairman of the Departments of Pediatrics at Case Western Reserve University and at Columbia University. His areas of special interest include perinatal medicine, intensive and emergency care of children, the provision and organization of children’s health and social services, and related issues of public policy and ethics. Dr. Behrman has published extensively in critically reviewed scientific journals and is Editor-in-Chief of Nelson Textbook of Pediatrics and the journal, The Future of Children. He is a member of the Institute of Medicine (IOM) and has served as chairman of two IOM committees concerned with child welfare.

Grace H. Christ, D.S.W., is an Associate Professor at Columbia University School of Social Work and has clinical and research interests in the fields of psychosocial oncology, end-of-life care, social work education and research, and childhood bereavement. Among other publications, she is the founder of the Journal of Psychosocial Oncology and author of Healing Children’s Grief, published in 2000 by Oxford University Press. She is currently a



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APPENDIX I COMMITTEE BIOGRAPHICAL STATEMENTS Chair Richard E. Behrman, M.D., J.D., is Executive Chair, Federation of Pediatric Organizations, Education Steering Committee. He serves as Consultant to the Lucile Packard Foundation for Children’s Health and Sr. Advisor for Health Affairs at the David and Lucile Packard Foundation. He is also Clinical Professor of Pediatrics at Stanford University and the University of California, San Francisco. He previously held positions as Chairman of the Boards of Lucile Packard Foundation for Children’s Health and the Lucile Packard Children’s Hospital and Director of the Center for the Future of Children. Prior to holding these positions, he served as Vice President of Medical Affairs and Dean of the School of Medicine at Case Western Reserve University. Dr. Behrman also served as Professor and Chairman of the Departments of Pediatrics at Case Western Reserve University and at Columbia University. His areas of special interest include perinatal medicine, intensive and emergency care of children, the provision and organization of children’s health and social services, and related issues of public policy and ethics. Dr. Behrman has published extensively in critically reviewed scientific journals and is Editor-in-Chief of Nelson Textbook of Pediatrics and the journal, The Future of Children. He is a member of the Institute of Medicine (IOM) and has served as chairman of two IOM committees concerned with child welfare. Grace H. Christ, D.S.W., is an Associate Professor at Columbia University School of Social Work and has clinical and research interests in the fields of psychosocial oncology, end-of-life care, social work education and research, and childhood bereavement. Among other publications, she is the founder of the Journal of Psychosocial Oncology and author of Healing Children’s Grief, published in 2000 by Oxford University Press. She is currently a

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Senior Faculty Scholar with the Project on Death in America and is a recipient of the National American Cancer Society’s Distinguished Service Award. She was formerly Director of Social Work at Memorial Sloan Kettering Cancer Center. Francis Sessions Cole, M.D., is Director of Newborn Medicine, Vice Chair of the Department of Pediatrics, Park J. White M.D. Professor of Pediatrics, and Professor of Cell Biology and Physiology at Washington University School of Medicine, St. Louis, Missouri. His research interests focus on the molecular basis of the susceptibility of the newborn infant to infection and, more recently, on the contribution of genetic variation in the surfactant protein B gene to risk of respiratory distress syndrome in newborn infants. He has produced more than 70 publications on these topics. Dr. Cole is also committed to excellence in education and has received numerous teaching awards including Clinical Teacher of the Year Award and Washington University’s Distinguished Faculty Award. He has facilitated the formation of community outreach programs for medical students including the Perinatal Project and Students Teaching AIDS to Students (STATS). He is a member of the Society of Pediatric Research, the American Society for Clinical Investigation, and the American Pediatric Society. Harvey R. Colten, M.D., is VP and Senior Associate Dean for Translational Research at Columbia University Health Sciences, and previously served as Chief Medical Officer at iMetrikus, Inc., a health services company that provides Internet-based, interactive health management solutions for patients with chronic illness. In the past, he has served as Professor of Pediatrics at Harvard Medical School and Chief of the Division of Cell Biology, Pulmonary Medicine, and Director of the Cystic Fibrosis Program at Children’s Hospital Medical Center, Boston; Chair of the Department of Pediatrics and Professor of Molecular Microbiology at Washington University School of Medicine, St. Louis, Mo.; and Dean of the Medical School and Vice President for Medical Affairs at Northwestern University. He is also a Fellow of the American Association for the Advancement of Science, the American Academy of Allergy and Immunology, and the American Academy of Pediatrics. He is a member of the Institute of Medicine and is a past Vice-Chair of its Council. Joanne Hilden, M.D., is currently Chair, Department of Pediatric Hematology/Oncology at The Children’s Hospital at The Cleveland Clinic. Dr. Hilden was formerly the Director of Oncology Research and Children’s Oncology Group (COG) Responsible Investigator at Children’s Hospitals and Clinics, St. Paul. She founded and co-chairs the COG Task Force on

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End-of-Life Care. She is involved in clinical care and teaching medical trainees about end-of-life care and the delivery of bad news. Dr. Hilden is a member of the American Society of Clinical Oncology (ASCO), and served on the ASCO Subcommittee on Cancer Care at the End of Life which produced the group’s position statement on care of the dying and carried out a survey of the country’s oncologists regarding end of life care. She is a Faculty Scholar of the Project on Death in America. Dr. Hilden is also a member of the Minnesota Commission to Improve End-of-Life Care and she is a certified trainer for the American Medical Association’s EPEC project to educate physicians about end-of-life care. She is a Fellow in the American Academy of Pediatrics and a member of the American Society of Pediatric Hematology/Oncology. She led the preparation of a paper on end-of-life issues in pediatric oncology that was included in the 2001 IOM report Improving Palliative Care for Cancer. Pamela Hinds, B.S.N., Ph.D., is the Director of Nursing Research at St. Jude Children’s Research Hospital in Memphis, Tennessee. She has expertise in the care of children with cancer and in developing effective team care to meet immediate and long-term needs of children and their families. Her research focuses on decision-making in pediatric oncology, coping and adolescents, and the experience of pediatric oncology nurses, among other topics. Among other publications, she authored the chapter on “End-of-life decision-making by pediatric oncology patients, their parents, and their health care professionals” in the Oxford Textbook of Palliative Nursing Care (Ferrell and Coyle, editors). She is co-chair of the Nursing Research Committee for the Children’s Oncology Group and is co-chair of the Palliative Care Initiative at St. Jude Children’s Research Hospital. She also serves on the Institutional Review Board and the Pain and Symptom Management Committee at St. Jude and is member of the Oncology Nursing Society. Angela R. Holder, LL.M., is currently Professor of the Practice of Medical Ethics at Duke University Medical Center. Ms. Holder was formerly Clinical Professor of Pediatrics (Law) at Yale University School of Medicine, where she taught a required first-year medical school course on law, medicine, and ethics entitled, “Professional Responsibility.” Her primary research interests involve legal and ethical issues of children and adolescents in the health care system, but she has also studied issues of human subjects research, malpractice, confidentiality, and legal and ethical issues in human reproduction. She served on the IOM Committee on the Effects of Medical Liability on the Delivery of Maternal and Child Health Care which produced the report Medical Professional Liability and the Delivery of Obstetrical Care (1989).

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Haiden A. Huskamp, Ph.D., is an Assistant Professor of Health Economics in the Department of Health Care Policy at Harvard Medical School. Her primary areas of research are: 1) the economics of mental health and substance abuse (MHSA) treatment; 2) the economics of the pharmaceutical industry; and 3) the financing of end-of-life care services. Dr. Huskamp recently served as principal investigator for a study funded by the Robert Wood Johnson Foundation to study the impact of Medicare financing methods on the provision of services to patients at the end of life. Her teaching areas include health care policy and health economics. She received her Ph.D. from Harvard University. Robert Kliegman, M.D., is Chairman of Pediatrics at the Medical College of Wisconsin and has interests in general and community pediatrics, pediatrics education, neonatology, and public health. He completed residency training in general pediatrics at Babies’ Hospital in New York, New York; and he completed neonatology and metabolism fellowships at Case Western Reserve University in Rainbow Babies and Children’s Hospital. He is the co-editor of Controversies in Perinatology and Nelson Essentials of Pediatrics. Dr. Kliegman has been a child advocate working with the American Academy of Pediatrics, municipal, state, and federal governments, and the George Washington University Health Policy Institute-Packard Foundation Roundtable for Children. He served on the IOM committee that produced the report Approaching Death: Improving Care at the End of Life in 1997. Marcia Levetown, M.D., works as a Pain and Palliative Care Education Consultant in Galveston, TX. She also serves as a Clinical Associate Professor of Pediatrics and Internal Medicine at the University of Texas Medical Branch at Galveston. She received her medical degree at the Medical College of Virginia, completed a pediatric residency at Baylor College of Medicine in Houston, and a fellowship in Pediatric Critical Care at Children’s National Medical Center in Washington, D.C. Her experience in the PICU led her to establish the award-winning Butterfly Program, a program designed to meet the needs of children living with life-threatening conditions and their families. She is a Project on Death in America Faculty Scholar and Chair of the Children’s International Project on Palliative and Hospice Services. She is the Principal Editor of the Compendium of Pediatric Palliative Care and author of numerous articles, chapters and curricula on pediatric palliative care issues. Dr. Levetown is a member of the ethics committees of the American Academy of Pediatrics, the National Hospice and Palliative Care Organization and the American Academy of Hospice and Palliative Medicine. She is also a founding board member of the Texas Partnership for End-of-Life Care.

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Neil L. Schechter, M.D., is Director of the Pain Relief Program at the Connecticut Children’s Medical Center, and Professor of Pediatrics and Head of the Division of Behavioral and Developmental Pediatrics at the University of Connecticut School of Medicine and St. Francis Hospital. His clinical and research experience covers the entire range of pain experience and treatment in children including pain during routine pediatric care and pain of children with advanced illnesses. He was one of the pediatric representatives on the AHCPR Clinical Guideline Panel on Acute Pain Management and was a member of the WHO Expert Committee that developed guidelines on cancer pain and palliative care for children. He is the senior editor of the major textbook on pain management in children. He is the chair of the Special Interest Group on Pain in Children of the Ambulatory Pediatric Association and has been a member of numerous committees at the local, state, and national levels which advocate for pain control and behavioral medicine research including the Supportive Care Committee of the Children’s Cancer Study Group, the Executive Council of the Society for Developmental and Behavioral Pediatrics, and the Task Force on Pain in Children of the American Pain Society, among others. In 1998, he received the Jeffrey Lawson Award for Advocacy in Children’s Pain Relief of the American Pain Society. Barbara Sourkes, Ph.D., is the first Kriewall-Haehl Director of Pediatric Palliative Care at the Lucile Packard Children’s Hospital and Associate Professor of Pediatrics and Psychiatry, Stanford University School of Medicine. Dr. Sourkes was previously at the Montreal Children’s Hospital and McGill University, and at the Boston Children’s Hospital and Dana-Farber Cancer Institute of Harvard Medical School. She has published three books: The Deepening Shade: Psychological Aspects of Life-Threatening Illness and Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness (1982, 1995, University of Pittsburgh Press); and Les enfants en deuil (Bereaved Children) with Michel Hanus, M.D. (Frison-Roche, Paris, l997). She was the recipient of the Charles A. Corr Award for Literature from Children’s Hospice International in 1999. Dr. Sourkes, a child psychologist, has consulted nationally and internationally on the psychological aspects of pediatric life-limiting illness, palliative care and bereavement. In addition to her clinical activities, research, publications, committee and board memberships, Dr. Sourkes is on the editorial boards of the Journal of Clinical Psychology in Medical Settings and The American Journal of Hospice & Palliative Care and has served as consultant for films on children with life-threatening illnesses. Lizabeth H. Sumner, R.N., B.S.N., has been involved in hospice care for over 22 years and is currently the Children’s Program Director of San Diego

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Hospice. She created the regional Children’s Program for terminally ill children in 1987 in partnership with San Diego Children’s Hospital / Health Center. The program includes several components such as an “Early Intervention Program” Perinatal Hospice, an innovative program that supports parents through pregnancy and birth of babies diagnosed with life-threatening conditions. The Children’s Program also provides services such as counseling and play therapy to support healthy children grieving the loss of a parent, sibling, or classmate. Ms. Sumner has consulted statewide and nationally with other hospices developing programs for dying and bereaved children. She has spoken at numerous local, national and international meetings on the topic of end-of-life care for children. Ms. Sumner has published both academic and popular articles and book reviews in nursing journals, textbooks, and newspapers, as well contributing as an expert resource for various publications. Most recently, she authored the chapter “Pediatric Care: The Hospice Perspective” in the Textbook of Palliative Nursing (Ferrell and Coyle, editors), and has a chapter in Hospice Care for Children (Armstrong-Dailey and Zarbock, editors). She is a member of the ChIPPS (Children’s International Project on Palliative and Hospice Services) workgroup, serves on the Ethics Committee of the San Diego Children’s Hospital, and participates in other collaborative initiatives. Joseph Wright, M.D., M.P.H., is Medical Director for Advocacy and Community Affairs at Children’s National Medical Center (CNMC) in Washington DC. He is also an Associate Professor of Pediatrics, Emergency Medicine, and Prevention and Community Health at the George Washington University Schools of Medicine and Public Health and practices pediatric emergency medicine in the Emergency Medicine and Trauma Center at Children’s. Administratively, Dr. Wright is founding Director of the Center for Prehospital Pediatrics in the Division of Emergency Medicine at CNMC, and also serves as the State Medical Director for Pediatrics within the Maryland Institute for Emergency Medical Services Systems. His major areas of academic interest include injury prevention and health services research, and he is currently developing a comprehensive program of pediatric prehospital research in the District of Columbia. He has received recognition for his advocacy work throughout his career including the Shining Star award from the Los Angeles-based Starlight Foundation acknowledging his outstanding contributions to under-served communities, and induction into Delta Omega, the national public health honor society. He has authored and co-authored many publications, serves on several national advisory boards, including the American Academy of Pediatrics Committee on Injury, Violence and Poison Prevention, and lectures widely to professional and lay audiences.