We had control over what happened: Pain control at a child's end of life

When Christine Reilly's little boy was being treated for cancer, she told his doctor she could handle almost anything. "The only thing I will not be able to tolerate is him looking at me and saying, 'Mommy, it hurts," she recalled.

Michael died when he was five years old, of alveolar rhabdomyosarcoma, which was diagnosed when he was nine months old. He pain was well controlled, especially at the end of his life.

Christine said once she and her husband knew Michael's cancer had spread, their focus shifted from curing the disease and having a child who could live a normal life to making sure he could have the most peaceful death possible. He died ten days after the family came home to Massachusetts from a trip to Disney World.

After they returned home, Michael's pain medications made him sleepier each day as his disease took its natural course. "We felt fortunate we had control over what happened," she said.

Dr. Joanne Wolfe and her colleagues just published a paper in the Archives of Pediatrics and Adolescent Medicine on this topic - the first paper that weighs parents' thoughts about the end of life for their terminally ill children. More than one-eighth of these parents considered hastening their child's death. Five parents said they had actually asked a caregiver to speed their child's death.

Advice to parents of terminally ill children: Use this study as a starting point for a discussion about end-of-life care for children. Explore all the options for pain control with your child's doctors and nurses.

Read a story about a plan for the end of life. Thanks to Elizabeth Cooney for the source story in the March 2 issue of the Boston Globe.