Home Is Site of Final Days of Dying Children

PHILADELPHIA, June 26 -- Children with complex chronic conditions are more likely to die at home today than they were two decades ago, researchers here said.

From 1989 through 2003, the proportion of children and adolescents with complex chronic conditions who died at home, rather than in a hospital, rose significantly (P<0.001), found Chris Feudtner, M.D., Ph.D., of the Children's Hospital of Philadelphia.

The shift probably reflects a combination of factors: prolonged survival in what once were swiftly lethal conditions, better technology for home care, and increasing use of hospice and palliative care, Dr. Feudtner and colleagues reported in the June 27 issue of the Journal of the American Medical Association.

And it raises important issues about how home care is delivered, the researchers argued, including how to monitor quality, expansion of palliative and hospice care, and equity of access.

"There has been a quiet transformation in care for children with severe chronic conditions," Dr. Feudtner said.

"Advances in medicine and technology are extending survival, as well as allowing medically fragile children to live at home," he added. "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."

For unclear reasons, though, the changes are largely confined to white children. Black and Hispanic children of all ages were half as likely to die at home than were whites, the researchers said.

"If they reflect different preferences among these groups," he said, "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."

The findings come from a 15-year retrospective analysis of death statistics from the National Center for Health Statistics, focusing on those who died before they were 20.

Over that period, Dr. Feudtner and colleagues found, 22.1% of the deaths could be attributed to complex chronic conditions, such as malignancies, or genetic disorders.

Analysis showed:

• The proportion of those younger than a year who died at home rose to 7.3% in 2003 from 4.9% in 1989.
• The corresponding rates among those from one to nine were 30.7% and 17.9%.
• And among those ages 10 to 19, they were 32.2% and 18.4%

Among infants, the absolute number of home deaths remained steady -- 456 in 1989 and 469 in 2003 -- but the number dying in hospital dropped sharply. Also, the number of home deaths among other children and adolescents rose to 1,655 in 2003 from 1,132 in 1989, an increase that was significant at P<0.001, again while hospital deaths dropped.

Overall, the percentage of home deaths went from 10.1% in 1989 to 18.2% in 2003. For each successive year, the likelihood of dying at home rose 4%, with an odds ratio of 1.04, and a 95% confidence interval from 1.03 to 1.04.

The study also found:

• Girls were more likely to die at home than boys. The odds ratio was 1.06, with a 95% confidence interval from 1.03 to 1.09.
• Compared with infants, those ages one through nine were nearly three times as likely to die at home. The odds ratio was 2.77, with a 95% confidence interval from 2.67 to 2.88.
• Compared with infants, those ages 10 through 19 were nearly 2.5 times as likely to die at home. The odds ratio was 2.57, with a 95% confidence interval from 2.47 to 2.67.

One strength of the study, the researchers said, is that it accords with a previous smaller study in Washington state. Also, it appears to parallel what has been happening among adults with chronic illnesses.

Finally, the researchers said, "the magnitude of the temporal trends and the racial and ethnic disparities regarding where children die are not only statistically significant but substantial and pronounced."