Feature Story

Children with complex chronic conditions are more likely to die in their homes than in the hospital

Of the U.S. children who died between 1989 and 2003, one in five (22 percent) died from an underlying complex chronic condition such as congenital heart disease, cancer, or neuromuscular disease. During that period, the place where these children died shifted from the hospital setting to their homes, according to a national study. Improved medical management of these diseases has prolonged children's survival.

Also, technological advances such as tube feeding and home ventilators may allow more medically fragile children to be cared for at home. Finally, pediatric home care and hospice services are more available today, explain the researchers. They found that during the study period, 82 percent of children died in the hospital and 15 percent died at home.

However, the percentage of infants dying at home increased significantly from 4.9 percent in 1989 to 7.3 percent in 2003. The percentage of 1- to 9-year-olds dying at home increased from 17.9 to 30.7 percent, and the percentage of 10- to 19-year-olds grew from 18.4 to 32.2 percent. However, black and Hispanic children were half as likely to die at home as white children, even after adjusting for medical condition, geographic location, and other factors.

Differential access to health care services or technology, cultural attitudes toward palliative and end-of-life care, and different levels of financial or other support in the family's social network may make dying at home more or less likely, suggest the researchers. Their findings were based on a retrospective study of the National Center for Health Statistics Multiple Cause of Death Files spanning 1989-2003. They studied the place of death of all children 19 years or younger with a complex chronic condition.

The study was supported in part by the Agency for Healthcare Research and Quality (T32 HS00002).

More details are in "Shifting place of death among children with complex chronic conditions in the United States, 1989-2003," by Chris Feudtner, M.D., Ph.D., M.P.H., James A. Feinstein, M.D., Marlon Satchell, M.P.H., and others, in the June 27, 2007, Journal of the American Medical Association 297(24), pp. 2725-2732.

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