Dodd introduces child pediatric pain treatment bill

by Kevin Joy

WASHINGTON - Before a gathering of children that have survived life-threatening illnesses and their families, Sen. Christopher Dodd, D-Conn., on Tuesday announced the introduction of legislation , that would provide $35 million aimed at improving pediatric pain treatment methods for seriously ill children.

Co-sponsoring the Compassionate Care for Children Act of 2003 and speaking with Dodd was Sen. Mike DeWine, R-Ohio, and Reps. Deborah Pryce, R-Ohio, and John Murtha, D-Pa. Their proposal would provide grants to doctors and nurses for training and education in how to provide end-of-life care to children and money for research in pain and symptom management.

"The critical issue here is about choices," Dodd said. "Far too many brave children living with terminal illnesses are forced to endure preventable pain and suffering."

The nation's health care system does not account for the special needs of children, the co-sponsors said. Under Medicaid, the parents of a child diagnosed with fewer than six months to live are required to choose between painkilling and medicinal treatment. So if parents, for example, place a dying child under hospice care, they must sign a "do not resuscitate" order, and the child is denied direct healing services like chemotherapy or surgery.

DeWine said the proposed legislation would permit simultaneous pain management and disease treatment for such children, which today allows only a limited number of hospice-approved doctors to see them, excluding outside physicians and specialists.

"This bill would allow parents not to make an impossible choice-one no parent should have to make," he said. "Many of these children do not get the care they need."

According to the National Association of Pediatric Hospitals, approximately 1 million children in the United States are living with a life-threatening illness, and fewer than 10 percent of terminally ill children who die each year receive any sort of hospice care during their last days.

But determining the life expectancy of a seriously ill child can be difficult, and existing health care rules do not account for sick children living significantly beyond a doctor's diagnosis, says Ann Langley, senior council for public policy for the National Association of Children's Hospitals.

"Medicaid and private insurance follow Medicare guidelines designed for the elderly," Langley said. "When hospice care became a required benefit of Medicaid, it wasn't written with children in mind."

Approximately 50 percent of those on Medicaid are children, according to Langley, and the difficult, restrictive choices that confront parents of children with life-threatening diseases are different from the issues affecting the aged.

"It's much different choosing hospice care if you are 80 years old and have six months to live," Langley said. "Families don't want to make that choice for a child-and the child certainly can't make that choice."

She also praised the legislation because it would help finance children's hospices, many of which have underpaid staffs and programs lacking operational funds.

Dodd, who introduced the Family and Medical Leave Act in 1993, which now permits eligible employees up to three months of unpaid leave to care for a newborn, an adopted child or a family member or to take time off because of a severe health condition, stressed the equal importance of the new legislation and was met with a round of applause from parents and the approximately 25 children who joined him on stage.

"It was once a radical notion to choose between children and families and your job during a time of illness," Dodd said, "But to say to somebody that you've got to make a choice regarding your child's care-to me, that's just wrong."

"We're going to pass this. I promise."