Breaking Down Barriers to End-of-Life Care for Children

By Serena Gordon
HealthDay Reporter
Monday, December 3, 2007; 12:00 AM

Copyright © 2007 ScoutNews, LLC. All rights reserved.

SUNDAY, Dec. 2 (HealthDay News) -- The death of a child is devastating for all concerned -- parents, grandparents, siblings, friends, even the child's doctor.

Complicating matters, even though more than 55,000 children die every year in the United States, palliative care -- which focuses on the pain, symptoms and stress of life-threatening illness -- isn't widely available for those youngsters.

A recent survey of parents who had suffered the loss of a child found that they believed end-of-life care for children could -- and should -- be improved. The parents identified specific areas that need to be changed, ranging from better communication and displays of emotion by medical staffers, to respect for the role of the parents.

"The death of a child is totally unnatural," said Dr. Karen Moody, co-director of integrative and palliative care at the Children's Hospital at Montefiore, in New York City. "There is no context where a child's death is OK. It's a crisis every time for every family."

And, it's not just families that may have trouble dealing with a child's death -- the health-care professionals may have difficulty, too.

"Most clinicians don't have a lot of experience in doing this. They may feel uncomfortable or like they failed the patient -- even if they did everything that could be done," said Dr. Edmund LaGamma, director of the regional neonatal intensive care unit at the Maria Fareri Children's Hospital at Westchester Medical Center in Valhalla, N.Y. "And, while experience allows you to get better [at coping or helping the family], it's not common for patients in pediatrics to die. So, pediatric doctors don't have as much experience with death as does someone in geriatrics."

Most pediatric deaths occur in a critical-care setting. And, about two-thirds of the deaths occur after removing mechanical ventilation while the child is in the pediatric intensive care unit, according to the survey, published in the journal Pediatrics.

Most of those parents responding were mothers, and three-quarters were married, with an average age of 42. Nine percent said they had no religious affiliation, 50 percent were Catholic, 34 percent were Protestant, 5 percent were Jewish, and 2 percent were Muslim, according to the study.