MONDAY, March 6, 2006 (HealthDay News) -- It's a scenario that most people can't even bring themselves to think about: the death of a child.
That may explain, in part, why pediatric end-of-life care hasn't received much attention, and why palliative care for children isn't widely available.
But a new study in the March issue of Pediatrics brings the issue to the forefront by reporting what parents who have lost their children said was needed most during the dying process.
"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. Those memories, they carry with them for the rest of their lives," she said.
Dr. David Steinhorn, medical director of palliative care at Children's Memorial Hospital in Chicago, echoed Siegel's sentiments, "This is such an important area. You only have one chance to do end-of-life care right. We can't make it 100 percent pain-free or free of pain and anxiety, but we can minimize those aspects," he said.
Each year, more than 55,000 children die in the United States, according to the study. More than half of those children are under 1 year of age. Most pediatric deaths occur in critical-care settings, and two-thirds of deaths in pediatric intensive care (PICU) occur after the removal of life support such as mechanical ventilation, the study found.
The Boston researchers sent questionnaires to the families of 96 children who had died in one of three Boston-area hospitals. Fifty-six parents returned the questionnaires.
Of those who responded, 64 percent were mothers, 75 percent were married, and 91 percent were white. The average age was 42. Half of the respondents were Catholic, 34 percent were Protestant, 5 percent were Jewish, 2 percent were Muslim and 9 percent identified no religious affiliation.
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.
But it isn't always easy for doctors to deliver a poor prognosis, admitted Dr. Eugene Perlov, a physician with the hospice division of the Visiting Nurse Service of New York.
"[Health-care providers] have a hard time talking about bad news. We're so invested in good outcomes, which is natural because our mission is to heal," he said.
And, that's exactly where palliative care can come in, said Steinhorn.
"Palliative care brings in a whole set of additional support when no more curative measures are available," he said, though he added that pediatric palliative care isn't available at most hospitals, even children's hospitals, yet.
Both Steinhorn and Perlov pointed out another important obstacle to increasing the availability of palliative care -- it's currently hard to get insurance reimbursement for such care.
Siegel said palliative care can be helpful from the time of diagnosis through to the end of the child's life, however. "We need to support parents emotionally. We need to help them maintain hope, but prepare them for what's going to happen," she said, adding that there can be reluctance to calling on palliative care specialists. "It's so unnatural for children to die before their parents, it's hard for everyone to shift to palliative care."
For more information on coping with a terminally ill child, visit End of Life Care for Children, sponsored by the Texas Children's Cancer Center.