Pediatric Advanced Care Team (PACT)

End-of-Life Homecare Increases

Children who die of a chronic illness are more likely to spend their final days at home compared to children who died two decades ago, according to a study in the June 27, 2007 issue of the Journal of the American Medical Association.

"There has been a quiet transformation in care for children with severe chronic conditions," said pediatrician Chris Feudtner, MD, PhD, MPH, of The Children's Hospital of Philadelphia, who is lead author of the study.

"Advances in medicine and technology are extending survival, as well as allowing medically fragile children to live at home. In addition, shifts in attitudes about palliative and end-of-life care may also be affecting both how these children live and whether they may die at home."

Palliative care focuses on relieving symptoms, improving comfort and enhancing quality of life when a cure is not possible. Feudtner is director of research for the Pediatric Advanced Care Team at The Children's Hospital of Philadelphia, which provides palliative care services to hospital patients.

Overall, a majority of chronically ill children still die in hospitals, with African American and Hispanic patients less likely than white patients to die at home. However, the shifting trend among certain families raises questions for all families, medical caregivers and policy-makers about how to best provide care and resources for very sick children.

Feudtner's team analyzed national health records for 198,000 US children whose deaths were attributed to a complex chronic condition between 1989 and 2003. Over 15 years, the proportion of chronically ill children dying at home increased significantly for each age group, from 4.9 percent to 7.3 percent among infants, from 17.9 percent to 30.7 percent for ages one to nine, and from 18.4 percent to 32.2 percent among 10- to 19-year-olds.

This is the first time that sites of death were studied for a national population of children with chronic diseases.

Read the press release.

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