Where do children with complex chronic conditions die? Patterns in Washington State, 1980-1998

Little is known about factors that influence whether children with chronic conditions die at home. We sought to test whether deaths attributable to underlying complex chronic conditions (CCCs) were increasingly occurring at home and to determine what features were associated with home deaths.

A retrospective case series was conducted of all deaths that occurred to children age 0 to 18 years in Washington state from 1980 to 1998 using death certificate data, augmented with 1990 US Census data regarding median household income by zip code in 1989, to determine the site of death.

Of the 31 455 deaths identified in infants, children, and adults younger than 25 years, 52% occurred in the hospital, 17.2% occurred at home, 8.5% occurred in the emergency department or during transportation, 0.4% occurred in nursing homes, and 21.7% occurred at other sites. Among children who died as a result of some form of CCC (excluding injury, sudden infant death syndrome, and non-CCC medical conditions), the percentage of cases younger than 1 year who died at home rose slightly from 7.8% in 1980 to 11.6% in 1998, whereas the percentage of older children and young adults who had a CCC and died at home rose substantially from 21% in 1980 to 43% in 1998. Children who had lived in more affluent neighborhoods were more likely to have died at home. Using leukemia-related deaths as a benchmark, deaths as a result of congenital, genetic, neuromuscular, and metabolic conditions and other forms of cancer all were more likely to have occurred at home. Significant variation in the likelihood of home death, not explained by the individual attributes of the cases, also existed across the 39 counties in Washington state.

Children who die with underlying CCCs increasingly do so at home. Age at death, specific condition, local area affluence, and the location of home all influence the likelihood of home death. These findings warrant additional study, as they have implications for how we envision pediatric palliative care, hospice, and other supportive services for the future.