Study: Pediatric End-of-Life Care Lacking

March 7, 2006

Each year, more than 55,000 children die in the United States; more than half of those children are under 1 year of age. A new study in the March issue of Pediatrics reports on what parents who have lost their children said was needed most during the dying process.

The parents identified six areas of critical importance that could improve pediatric end-of-life care:

• Honest and complete information. Families wanted health-care providers to be forthcoming with information and not try to withhold information to protect them.
• • Ready access to staff. In a rushed hospital setting, it’s easy for a parent to miss the doctor on rounds. Parents suggested setting up a regular time for bedside consultations.
• Communication and care coordination. Often, an ill child will have many different specialists caring for him or her. Some parents found talking to so many doctors confusing, particularly if doctors expressed differing opinions.
• Emotional expression and support by staff. Parents wanted to know that staff members cared and were “real people.”
• Preservation of the integrity of the parent-child relationship. Parents wanted health-care providers to acknowledge their vital role in their child’s life. They wanted to be respected and included in the decision-making process.
• Faith. Faith was a double-edged sword for this group of parents. Some found comfort in their faith and sought counsel from religious personnel. Others felt betrayed by their beliefs at this difficult time.

Parents felt it was important for doctors to give them the big picture and to be honest with them about their child’s situation, no matter how grim the prognosis. “What we cannot handle is not knowing what is going on,” wrote one parent.

“We can’t always prevent someone from dying, but we can create a better situation,” said Dr. Linda Siegel, a pediatric critical care and palliative care expert at Kravis Children’s Hospital at Mount Sinai Medical Center, in New York City. For example, she said, a child can die with monitors screeching and a code team present, shocking their heart, trying to revive them, or a child can die with a parent holding them, the room lights low and soft music playing in the background.

“Health-care providers need to be aware of the impact they have on the family at the end of life,” said Siegel. “Those memories, they carry with them for the rest of their lives.”