Florida program could help expand hospice care for kids nationwide

Caprice A. Knapp, Ph.D.

Caprice Knapp, Ph.D., an assistant research professor of epidemiology and health policy research in the College of Medicine. Photo by Sarah Kiewel

Less than 11 percent of children with life-threatening illnesses receive hospice care in the last year of life, in part because insurance requirements make it difficult for families to obtain care, according to a new University of Florida study.

But a pilot program in Florida that has redefined when children can receive palliative care could help change this, UF researchers say.

“One barrier has been the way the reimbursement system works,” said Caprice Knapp, Ph.D., an assistant research professor of epidemiology and health policy research in the College of Medicine and the lead author of three studies recently published on pediatric palliative care in Florida. “Traditionally, for hospice reimbursement, if your child has a terminal illness, you can access hospice care but a physician must certify that the child is within the last six months of life.

“Even though hospice services are beneficial and families who end up using them are happy with them, parents might perceive this as giving up hope due to the six-month rule.”

Florida was one of four states selected to receive $3.2 million to develop a new model for pediatric palliative care and was the first to implement its program in 2005. Called “Partners in Care: Together for Kids,” this program allows children on Medicaid or the State Children’s Health Insurance Program to receive palliative care from the time they are diagnosed with a life-threatening condition, regardless of prognosis.

“Care for children at the end of life costs a lot of money,” Knapp said. “But if we move them into this new model of care, we might be able to save money and improve their quality of life.”

Prior to the program, between 7 and 11 percent of children who died in Florida received hospice services at the end of life, according to a study the researchers published in March in the Journal of Palliative Medicine. By contrast, about 30 percent of adults with cancer receive hospice care at the end of life, Knapp said.

Minority children were even less likely to receive hospice services. According to the study, white children incurred about $800 more in hospice expenses than minority children.

Between 2005 and 2008, enrollment in the program, which is available in seven cities across Florida, increased from 80 patients to 468. Of those families, 85 percent reported they were pleased with the program, according to an article published in the Journal of Palliative Medicine in November.

Although the word “hospice” tends to trigger thoughts of older patients in their last days of life, palliative care actually ranges from managing a patient’s symptoms to offering psychological services to patients and their families.

“Children who have palliative care often live better,” said Sarah Friebert, M.D., director of the A Palette of Care Program and the Haslinger Division of Pediatric Palliative Care at Akron Children’s Hospital in Ohio. “Their families are more well-adjusted. Their symptoms are more controlled. They are able to enjoy the good times they have. Palliative care can really help make that better.”

Because Florida’s new program allows children and families to obtain pediatric palliative care anytime after their diagnosis, more families can now receive services, Knapp said.

Depending on the outcomes of the program, private insurance companies might eventually choose to adopt similar policies, Knapp added.

“Florida is the only state where the rule has been changed across-the-board,” Knapp said. “It’s about the big picture, though. We’re making small strides toward comprehensive pediatric palliative care coverage, but this is the first time this has ever been done by a state.”