Legacy MattersWhen children die, parents are devastated. What used to be a common denominator among American families is now uncommon.
Still 55,000 children die each year, more than half are less than a year old and the great majority die in hospitals
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.
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A recent survey of parents whose children have died in hospitals has identified six areas of critical importance that could improve pediatric end-of-life care.
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.
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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."