Medical care of the terminally ill is one of the most emotionally fraught and controversial issues before the public today. As medicine advances and technologies develop, end-of-life care becomes more individualized and uncertain, guided less by science and more by values and beliefs. The crux of the controversy is when to withhold or withdraw curative treatments--when is enough, enough?
Political debates rage about when treatment is no longer effective; difficult cases are contested in courts; and the media devour the most sensational aspects of end-of-life care. In all this excitement and controversy, what is sadly overlooked is the extreme pressure that care of the terminally ill puts on medical staff as they deal with patients and their families and make life-or-death decisions. That pressure--the psychological strain and continuing uncertainties--is magnified when the patients are children.
David Bearison looks at this controversial issue from the perspective of the medical staff caring for dying children. Not just doctors, but nurses and counselors as well. By capturing their stories--as no other book has, Bearison is able to move beyond broad, abstract ideas about end-of-life care to convey the situated contexts of such care, including the complications, disagreements, frustrations, confusions, and unexpected setbacks.
In addition to a discussion of questions surrounding whether to withhold or withdraw curative treatments, When Treatment Fails explores the crucial concerns of those medical practitioners who care for dying children: education and training, relation with one another, communicating with patients and families, and finally, coping and moving on. Ultimately, the threads connecting these themes are the great costs and rewards of this difficult work, and the lessons that can be drawn from the nitty-gritty experiences of medical practitioners who struggle to find the balance between trying to defeat death and trying to provide comfort.
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David J. Bearison's many positions include Professor of Developmental Psychology at the Graduate Center of the City University of New York, Adjunct Professor of Medical Psychology in Pediatrics and Psychiatry at the College of Physician and Surgeons of Columbia University, and Attending at the Children's Hospital of New York (CHONY), Columbia Presbyterian Medical Center. He is a member of the American Psychological Association's Task Force on End-of-Life Issues for Children and Adolescents. He lives with his wife, a pediatric oncologist, in New York City and Croton on Hudson, NY.
"This is a deeply moving, yet masterfully organized book about children dying of fatal diseases--the impact of death on parents, doctors, and nurses. If death is the 'looming terror' of life, a child's death multiplies the terror and attendant sense of loss. There is no 'theory of death,' and Professor Bearison wisely uses narrative accounts to capture the uniqueness of each death and its human impact. What eases the suffering is humane and honest communication between parents and dying kids, but also between parents and medical staff. But as Jessica Mitford once put it, 'Gracious dying is a huge, macabre, and expensive joke on the American people.' This book is required reading for those concerned with the 'management' of the tragic."--Jerome Bruner, University Professor, New York University
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