The Edge of Medicine—Stories of Dying Children and Their Parents

Pediatric end-of-life care raises exceedingly difficult questions: Is there a natural trajectory for children to die in hospitals or at home? How might we, in developmentally appropriate ways, involve children in end-of-life decisions?

While there is no "correct" way to die, David Bearison concludes that all end-of-life issues in pediatrics boil down to finding ways to respect and honor what patients, under the purview of their families, find is best for them. This issue is conceptually simple, but practically complex, as Dr. Bearison highlights in The Edge of Medicine. The book tells the stories of dying children and their families, capturing the full range of uncertainties, hopes and disappointments, and ups and downs of children near the end of life. The Edge of Medicine serves as the perfect follow-up to David Bearison's When Treatment Fails: How Medicine Cares for Dying Children, which is based on the narratives of hospital staff caring for dying children (and their families). Together with its prequel, The Edge of Medicine presents a more complete picture of what happens when everyone involved, from medical staff to patients and their families, is struggling with pediatric end-of-life care. Dr. Bearison relies on narrative to bridge the disconnect among abstract theories, medical technologies, and clinical realities.

David J. Bearison is Emeritus Professor in the doctoral programs in developmental psychology (Chair, 1992-1998), educational psychology, and forensic psychology, the concentration in health psychology, and the concentration in psychology and law (Founding Director, 2002-2006) at the Graduate Center of the City University of New York. He is Adjunct Professor of Pediatrics at the Mount Sinai School of Medicine and Adjunct Professor of Medical Psychology in Pediatrics and Psychiatry at the Columbia University College of Physicians and Surgeons.

He received his doctorate in clinical and developmental psychology from Clark University, where he was Scholar and then Fellow of the National Institute of Mental Health. He was a research fellow at the Merrill-Palmer Institute, a clinical intern in psychology at the Children's Hospital Boston, a pre-doctoral fellow in pediatrics and later a senior fellow in psychiatry at Harvard University Medical School, twice a Lady Davis Fellow and visiting professor of psychology at the Hebrew University in Jerusalem, twice a Rockefeller Foundation Resident Scholar in Bellagio, Italy, a visiting professor of pediatrics at Mount Sinai School of Medicine in New York, and a visiting scholar of the Hastings Center in Garrison, New York, a think tank that promotes discussions of ethical issues in medicine and the life sciences. Dr. Bearison is a Fellow of the American Psychological Association and the Society of Pediatric Psychology.

His research is focused on the social and cultural foundations of cognitive and emotional development, particularly with respect to peer relations and how people understand and adjust to medical trauma. Dr. Bearison has authored more than 75 studies in leading scientific journals in psychology, education, medicine, nursing, and social work. He has and continues to serve on the editorial boards of several leading scientific journals, including Human Development, Cognitive Development, Journal of Applied Developmental Psychology, The Narrative Study of Lives, and Applied Developmental Science. Dr. Bearison is also a founding member of Sex Roles: A Journal of Research, the first and preeminent behavioral science journal devoted to the study of gender differences and equities. He consults with state and local agencies, courts, philanthropic foundations, and professional associations on matters of child development, welfare, and social justice.

Linda Granowetter is Professor of Pediatrics at New York University School of Medicine, Medical Director of the Hassenfeld Children's Center for Cancer and Blood Disorders, and Division Chief of Pediatric Hematology/Oncology.