Infant and child deaths in acute care settings: implications for palliative care

Despite 56% of child deaths occurring in inpatient hospital settings, who these children are and how they die has not been fully described. The purpose of this study was to identify the characteristics of those infants and children who die in acute care settings, and describe the extent to which palliative care was used prior to their deaths.

This study used a retrospective descriptive design. The 2000 Healthcare Cost and Utilization Project (HCUP) Kids' Inpatient Database (KID) was analyzed to define the national population of infants and children who die in acute care settings. In addition, medical records of a random sample of deaths at a large academic children's hospital were reviewed to further characterize the events surrounding childhood deaths.

The 2000 HCUP-KID included 13,643 deaths of children less than 18 years of age, representing an estimated 26,571 infant and child deaths, nationally. One hundred eleven infants and children who died at an academic children's hospital over four years were included in a detailed chart review. The majority of the deaths in both databases occurred in males, whites, and infants less than 12 months of age. Of the children who died in the academic children's hospital, most died in a critical care unit (86%). Fifty-four percent of the HCUP-KID deaths occurred in general hospitals and 46% occurred in children's hospitals. Children who died in children's hospitals had more complex chronic conditions (CCC) than in general hospitals. Regardless of hospital type, the most prevalent CCC categories were neuromuscular, cardiovascular, respiratory, congenital/genetic, and malignancies.

The results of this study suggest that large numbers of children die in both general and children's hospitals with a wide variety of illnesses and at all ages, indicating that all acute care pediatric providers need a working knowledge of and access to end-of-life and palliative care services.