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

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Description

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 paediatric end-of-life care. Dr. Bearison relies on narrative to bridge the disconnect among abstract theories, medical technologies, and clinical realities.show more

Product details

  • Hardback | 240 pages
  • 129.54 x 180.34 x 25.4mm | 272.15g
  • Oxford University Press Inc
  • New York, United States
  • English
  • 0195389271
  • 9780195389272
  • 1,990,084

Review quote

If you work in pediatric palliative care, this is required reading. If you work in adult palliative care, you should also read it because I think there are lessons to be learned from the attitudes in this book. * IAHPC Newsletter, Jan 2013 * David Bearison provides revealing insights into the experiences of patients, parents, and medical professionals who confront the serious illness and death of children. Their narratives convey the unfathomable grief that accompanies the devastating diagnoses. Bearison offers important examples of how to speak with honest respect while delivering the harshest truth. He also allows the reader to witness the strength, fortitude, and courage that real people actually display. * Rosamond Rhodes, Professor of Medical Education and Director of Bioethics Education, Mount Sinai School of Medicine * I rarely feel compelled to commend a book that is hard to read-but not because of the writing, which is clear and compelling. It is hard to read because few deaths can equal for sadness and a sense of loss the death of a child. The stories and narratives in this book do not spare us-outsiders looking in-from the emotional pain those deaths cause, in the children, their families, and the doctors and nurses who care for them. I could not put it down-or wait to put it down. * Daniel Callahan, The Hastings Center * This powerful book takes readers inside the most difficult conversations in pediatric care, but does so with a warmth and thoughtful concern that will buoy the reader's spirit. David Bearison takes us to the edge of medicine - the place where cure is no longer possible, but where physicians and mental health practitioners can make critical, positive differences in the lives of dying children and their families. Through the narratives, we come to see that even in cases of devastating medical illness, much can be done to offer comfort and promote coping when death looms on the horizon. Both medical and mental health practitioners will find this an immensely valuable and uplifting resource. * Gerald P. Koocher, Professor of Psychology and Associate Provost, Simmons College, Boston *show more

About David J. Bearison

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. 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.show more

Table of contents

Chapter 1: Pediatric End-of-Life Care and Talking About It ; Chapter 2: Narratives, Narrative Medicine, and Procedures ; Chapter 3: Twenty Stories about Children Dying ; Chapter 4: Narratives from Children Who Are Dying and Their Parents ; Chapter 5: Narratives about Families, Friends, and Hospital Practices ; Chapter 6: Conclusions ; Epilogue by Linda Granowettershow more