About.com Rating

The Bottom Line

By Joanne Hilden, M.D., and Daniel R. Tobin, M.D., with Karen Lindsey; 220 pages. From the book jacket: "This book is created to help you to feel some guidance in the dark, to help you make all the decisions you will need to make during this time."

Parents of children with life-threatening conditions need all the help and good advice they can get, especially since they often don't get enough from health-care professionals.

This book makes a worthy attempt at filling that gap.

About the Guide Rating



Pros

• Talks gently about the things no parent wants to hear
• Organized approach leads reader through difficult material
• Gives you the support and empowerment your doctor might not
• Offers respect for all parents' choices
• Serves as a resource that will be needed more and more as treatment options grow

Cons

• Respects all parents' choices, but clearly seems to favor "peaceful death"
• You'll need a fair degree of support and empowerment from your doctor to use these tips
• Degree of palliative care described may not be available to all families
• Suggests parents assert themselves with doctors, but some have lost custody for doing that
• Offers a best-case view of a worst-case world

Description

• Chapter 1: Facing Your Child's Life-Threatening Condition
• Chapter 2: Individuality of Disease, of Child and Family, and of Choice
• Chapter 3: Taking Control of Your Life
• Chapter 4: Coming to Terms
• Chapter 5: Your Spiritual Mindset
• Chapter 6: The Turning Point

• Chapter 7: Some Needed Preparation
• Chapter 8: Finding Peace
• Epilogue
  Further Resources
  Further Reading

Guide Review - Book Review: Shelter from the Storm

The death or serious illness of a child is something no parent wants to consider. When there's no option but to consider it, we all hope we'll have doctors as compassionate, clear-headed, and parent-friendly as the authors of this book. Stories in the media about parents losing custody for disagreeing with doctors' opinions and battles over when it's time to "pull the plug" make it seem as though most parents don't have that luxury. Perhaps that's a media distortion; I hope so. The palliative care and parental support described in this book seems like the best of all bad options.

The authors walk parents gently through the decisions that have to be made, the right way to involve siblings and family members, the need to pursue treatment options and the need to know when to stop, the spiritual struggles and the grieving process, the inspiring strength and unimaginable wisdom of children. This thoughtful volume will speak directly to the needs of many families who are dealing with tragedy now, and many who must think ahead to what they may be facing. The text constantly affirms parents' rights to participate in their child's care, and since the authors are both doctors, that's nice to hear.

And yet ... the book also constantly affirms the desirability of a peaceful death, and giving up any dramatic measures that would prevent that. Maybe this really is in the best interest of child and family, but with the euthanasia debate ringing in my ears, I wonder.

Discuss this book.