Helping Dying Children Live Well

From the January day 6-year-old Lucas Livingston was diagnosed with leukemia, to a time three months later when his body rejected his father’s transplanted bone marrow, his family and caregivers at the Johns Hopkins Children’s Center had but one resolve: treat to cure. But in the next two months of fighting, Lucas’ condition only got worse. His father Gordon Livingston, in his memoir Only Spring, recalls spending the last 11 days in intensive care, watching his son fade in and out of consciousness. “When your child dies,” says the Hopkins-trained psychiatrist, “it’s just an inconceivable loss. It’s not the order things are supposed to go in, and people have no preparation for this.”That was in 1992. Since then, Hopkins has taken many strides to give better care to its dying patients, and especially its young ones. “Sometimes people think that when we start speaking about palliative care it means we’ve given up hope,” says Cynda Rushton, DNSc, RN, FAAN, Johns Hopkins University School of Nursing associate professor and Program Director of Harriet Lane Compassionate Care, Hopkins’ pediatric palliative care program. “But instead of focusing on the death, we want to help them to live as well as they can, for as long as possible.”Livingston never once lost hope during the five-month ordeal, but fears too many of his son’s doctors and nurses did. “If anything, the doctors were afraid to be hopeful,” he says. “But it wasn’t helpful to us to see them dragging in on rounds like funeral directors.”Read more at...Johns Hopkins Nursing Magazine, Spring 2006.