A majority of chronically ill children still die in hospitals, with African American and Hispanic patients continuing to be less likely than white patients to die at home. 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.
However, the shifting trend in place of death raises questions for families, medical caregivers and policy-makers about how to best provide care and resources for very sick children.
There has been a quiet transformation in care for children with severe chronic conditions, said pediatrician Chris Feudtner, M.D., Ph.D., M.P.H., lead author of the study in the June 27 Journal of the American Medical Association. 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.
Feudtners study team analyzed national health records for 198,000 U.S. children whose deaths were attributed to a complex chronic condition between 1989 and 2003. Those conditions include heart disease, cancer, neuromuscular diseases that worsen over time, and genetic illnesses, among others.
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 was the first time the sites of death were studied for a national population of children with chronic diseases.
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