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.

The areas identified by these parents as needing improvement included:

• The need for honest and complete information from care-givers. The parents didn't want doctors and nurses to keep information from them to protect them. "What we cannot handle is not knowing what is going on," one parent wrote.
• Coordination of care and communication. Rather than having every doctor caring for a child present their opinion to parents -- which sometimes differs with other doctors' opinions -- perhaps one doctor should provide a consensus opinion.
• Easier access. Parents said they could easily miss doctors on rounds, even if they just stepped out for coffee. Having a regularly scheduled meeting time would be helpful for parents.
• Respect for the parent-child relationship. Parents wanted to be acknowledged as a vital part of the decision-making process.

Moody said that what's most important for the child is symptom and pain management. "If we could at least eradicate pain at the end of life, we would be making a big step forward," she said.

For the parents, Moody added, "I'm not convinced there's ever enough support. This is such a painful experience. And, communities don't know how to address people who've lost a child. People don't know what to say, so you see an avoidance. It becomes such an isolating experience."

To ensure that health-care professionals don't keep families of dying children at a distance, Moody said they need training. "Often, they [doctors and nurses] feel if there's nothing they can do, they just stay away. But, you do so much just by being available and making sure the child is comfortable."

LaGamma echoed that sentiment and said training through conferences is available. And, in medical settings where they don't have much experience with children's deaths, role-playing exercises can help prepare staffers for dealing with this difficult experience.

Small things, he added, can make a big difference to these families. "Touching them -- putting your hand on their back, having tissues available, taking the time to speak or sit with someone, some people want hugs, these things all matter," he said.

More information

To learn more about the needs of the family of a dying child, visit the Texas Children's Cancer Center.