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.
Feudtner's 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.
"Although there is a clear trend toward higher proportions of medically fragile children dying at home, our research does not support a value judgment that dying at home is preferable to dying in a hospital," said Feudtner, a prominent advocate for improving quality of care for children with life-limiting conditions.
"We want each family to be able to make care decisions based on their own values, wishes and preferences, and medical professionals should collaborate with patients and families in helping them make decisions in an atmosphere of mutual understanding, trust and respect."
Over the 15-year period covered by the study, significant racial and ethnic disparities persisted, with the odds of dying at home remaining significantly lower among black and Hispanic children compared to white children. "This study cannot tell us why these racial and ethnic disparities exist," said Feudtner.
"If they reflect different preferences among these groups, then the differences would be much less worrisome than if the disparities are linked to poorer economic or social resources, or to reduced access to health care services and medical technology."
Feudtner concludes that the findings of the study underscore that much remains to be learned and accomplished in the field: "We clearly need more research to better understand family and patient needs, and to improve the quality of care for chronically ill children, whether they are at home or in the hospital."