Where infants die: examination of place of death and hospice/home health care options in the state of Wisconsin.

Infants (less than 1 year of age) have the highest death rates in the pediatric population, yet there is little published on hospice utilization for infant home deaths. We sought to describe: (1) where infants with a predisposing life-threatening condition are dying, (2) agency services available to dying infants and their families, and (3) utilization of these services for infants within the state of Wisconsin. We collected information from death certificates for infants whose cause of death was either congenital anomaly or condition of the perinatal period, such as hypoxic ischemic encephalopathy or prematurity. In addition, we surveyed all hospice and home health agencies in Wisconsin to determine their ability to serve and whether they were utilized for this same population. During 1992-1996 in Wisconsin, state records indicate that 2591 infants died: congenital anomalies or conditions of the perinatal period resulted in 1538 (60%) of these deaths. Of the 508 infant deaths from congenital anomalies, 46 (9%) occurred at home. Of the 1030 deaths from conditions of the perinatal period, 16 (1.5%) occurred at home. Only 36 (40%) of the 91 hospice/home health agencies that responded to our survey provided services to the pediatric population between 1992-1996. During this time, only 11 agencies provided care for 20 infant home deaths, comprising 32% of infant home deaths reported to the state in that same time period. In comparison to adults and older children, we found a low home death rate for infants with a life-threatening condition. To clarify these findings, we discuss barriers to infant home death.