Expanding Pediatric Hospice Care Options

Carol Ann Campbell writes for Kaiser Health News about changes in the hospice care model for pediatric patients.

New models of care similar to hospice but not limited to children who are dying have emerged in a handful of states, and many more are moving in that direction. The programs provide services for a broader range of severely ill children, such as those with congenital defects, muscular dystrophy, HIV/AIDS, massive burns or serious brain damage from car accidents and near-drownings.

Medicaid, the state-federal health program for the poor and disabled, is paying for services in an increasing number of states, among them Florida, California and Colorado. States that obtain federal permission to use Medicaid funds must demonstrate that the programs won’t add to costs. While advocates insist these initiatives can save money, not everyone is convinced. In New Jersey, officials are not seeking Medicaid coverage because of “financial constraints,” a spokesman said.

“Hospice is a philosophy of community-based care that supports the entire family, medically, socially and spiritually,” said Lori Butterworth, co-director of the Children's Hospice and Palliative Care Coalition in California. “We've created a new service model to meet the needs of children.”

Hospice was created with adult cancer patients in mind, and experts say the traditional approach does not work well for children, even when the prognosis is dire. “No parent will give up a chance to cure their children in order to get more services,” Butterworth said.

Private insurance programs generally follow the same rules as Medicaid and Medicare, the federal health program for the elderly and disabled, requiring a six-months-to-live