Shelter from the Storm: Caring for a Child with a Life-Threatening Condition

Overview

critically ill and unlikely to survive. A recent Harvard University study on pediatric end-of-life care has shown that the medical community is failing such children and their families. Indeed, in their effort to be ever-hopeful and cure-oriented in the face of a child's terminal illness, they neglect to advise parents on the basics of emotional support for all family members, pediatric pain medication, and the need for making plans and worst-case preparations.Based on the National Advanced Illness Coordinated ...

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Shelter From The Storm: Caring For A Child With A Life-threatening Condition

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Overview

critically ill and unlikely to survive. A recent Harvard University study on pediatric end-of-life care has shown that the medical community is failing such children and their families. Indeed, in their effort to be ever-hopeful and cure-oriented in the face of a child's terminal illness, they neglect to advise parents on the basics of emotional support for all family members, pediatric pain medication, and the need for making plans and worst-case preparations.Based on the National Advanced Illness Coordinated Care program and the stories and advice gleaned from co-author Joanne Hilden's years of work as a pediatric oncologist, Shelter from the Storm fills this advice-and-caregiving void. A compassionate road map to what the family may have to face, what they may be asked to decide, and how they might want to involve their child in the decision-making, Shelter from the Storm will help parents and caregivers make informed, loving, and protective choices on behalf of their children in the most trying of times.

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Editorial Reviews

Library Journal
Caring for a dying loved one is always painful, but when the patient is your child, the pain cuts deeper. Too often, there seems to be nowhere for parents to turn for help and advice on dealing with their child's condition. Hilden, a pediatric oncologist, and Tobin, author of Peaceful Dying and director of the National Advanced Illness Coordinated Care program, draw on their years of working with terminally ill patients to address the medical, emotional, spiritual, and even financial questions that parents need to consider. They offer suggestions on how to discuss death with the child and the rest of the family, and they offer narratives from parents who have gone through the experience. With a large list of resources, this compassionate guide "takes your hand and guides you down a path you don't want to walk." Recommended for most collections.-KellyJo Houtz Griffin, Eatonville, WA Copyright 2003 Cahners Business Information.
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Product Details

  • ISBN-13: 9780738205342
  • Publisher: Da Capo Press
  • Publication date: 11/27/2002
  • Pages: 220
  • Sales rank: 1,449,390
  • Product dimensions: 5.34 (w) x 8.72 (h) x 0.56 (d)

Meet the Author

Joanne Hilden, M.D., is the Chair of the Department of Pediatric Hematology/Oncology and Medical Director of Pediatric Palliative Care at the Children's Hospital at The Cleveland Clinic in Cleveland, Ohio. Daniel R. Tobin, M.D., piloted the FairCare program for peaceful dying at the V.A. Hospital in Albany, New York. He is now expanding the program to a network of other hospitals and consulting for insurers on end-of-life issues. Karen Lindsey is coauthor of Dr. Susan Love's Breast Book and Dr. Susan Love's Hormone Book.

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Table of Contents

A Note on Language xi
Foreword xiii
Preface xix
Introduction: Why This Book? 1
1 Facing Your Child's Life-Threatening Condition 17
2 Individuality of Disease, of Child and Family, and of Choice 35
3 Taking Control of Your Life 43
4 Coming to Terms 77
5 Your Spiritual Mindset 127
6 The Turning Point 137
7 Some Needed Preparation 153
8 Finding Peace 173
Epilogue 193
Further Resources 199
Further Reading 201
Acknowledgments 207
Index 211
About The Children's Hospital at The Cleveland Clinic 219
About the Life Institute 220
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Sort by: Showing all of 2 Customer Reviews
  • Anonymous

    Posted March 14, 2010

    I Also Recommend:

    we are all getting through it

    I found this book to be extemely helpful in giving me informed information on palliative care. My baby was diagnosed with SMA at 3wks old and passed just after 4 months. This book, although it was general for any life threatening illness of children, helped me to know what to expect. Alot of info on obsticles of palliative care and being able to identify the downhill battle for his end of life treatment. I gotta say it gave me many answers that people in the medical field were to afraid to give me a specific answer for...and if you have a situation like this, you only have one shot to make it a smooth transition.

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted March 13, 2012

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