Needs of dying children wins heart of actress
Joanne Kenen

WASHINGTON—Melissa Gilbert, best known for her role on “Little House on the Prairie” in the 1970s, is part of a health coalition kicking off a national campaign next week to improve care for seriously ill and dying children. Gilbert, now 43, is more than a celebrity spokeswoman; since her emergence as a child star at age nine, she has visited sick children in homes and hospitals, lobbied for policy change, and taken training courses in end-of-life pediatric care alongside nurses.
She even plans to go to nursing school, although she’s not sure when that will be. “I’d do it in a heartbeat,” she said, if she could figure out how to squeeze in four years of school while juggling a career and her life as a wife and mother. About 53,000 U.S. babies, children and teenagers die each year. Groups advocating for more pediatric hospice and palliative care say too many die in pain, and without adequate emotional support for themselves and their families.
Tens of thousands of other children live for many years with severe chronic illnesses such as cystic fibrosis and could benefit from more access to palliative care. Traditional hospice care usually is available to people with a life expectancy of six months or less, and people usually have to stop seeking a cure. Palliative care can be more flexible, offering “comfort care” for longer time spans and without the requirement that a patient stops aggressive treatment.
Gilbert knows first-hand the trauma of having a very sick child. One of her own children was premature and began life precariously in a neonatal intensive care unit. He’s a healthy sixth-grader now, but in that first difficult year Gilbert said she got to know families who were not so lucky. Even before that, the actress, who has also been president of the Screen Actor’s Guild, had been drawn to sick children. Her best friend died of a brain tumor when they were only four, and since her emergence as a child television star she has spent lots of time visiting hospitals.
“Somehow I always ended up on the pediatric oncology ward,” she said in a telephone interview from her home in California.
She is now president of the board of the Children’s Hospice and Palliative Care Coalition, which will team up in New Orleans next week with the National Hospice and Palliative Care Organization and other health groups on a program called “Partnering for Children.” “We can raise awareness about the importance of pediatric palliative care, which is dedicated to ensuring that seriously ill children and their families get the compassionate medical, emotional, and spiritual support they need to hold on to hope, whatever form it takes,” Dr. Don Schumacher, president of the national hospice organization, said in a statement.
Gilbert and the health groups want more outreach about hospice and palliative care both to families with sick children and to the medical community itself. They want the doctors, nurses and social workers who have specialized in the care of the dying to do more to meet the needs of the youngest patients.
Children are not miniature adults; their diseases follow different trajectories, and they don’t always respond to medication, including painkillers, like adults. Only about one in eight of the nation’s 4,100 hospices have a formal pediatric program; the record is mixed on whether the rest of them will take a young patient, according to the hospice organization.
About 7,000 children get hospice services each year, but about 20,000 more terminally ill children — many of whom die in high-tech hospitals far from home — could benefit, the national hospice organization estimates. Most hospice care is provided at home.