Better definition of and explanation to families and health care providers about what palliative care programs offer may improve perceptions about palliative care and increase program utilization.
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.
The purpose of this study is to explore a theological perspective toward genetic counseling. A survey was sent to 207 ministers within the Evangelical Lutheran Church of America (ELCA), to determine their perspectives toward four different scenarios in a prenatal genetic counseling setting. The four different scenarios included situations involving Huntington disease, Down syndrome, trisomy 18, and anencephaly. Nearly all ELCA Lutheran pastors perceived genetic counseling as beneficial and useful and wanted to be involved in the decision-making process for whether or not to terminate pregnancy. Their views toward termination of pregnancy varied depending on the severity of the genetic abnormality. Severity in this study was based upon life compatibility. As the severity of the genetic abnormality increased, the percentage of Lutheran pastors who viewed termination as an option increased from 23% (Down syndrome) to 62% (anencephaly). A better understanding of how spiritual leaders view genetic counseling would provide an insight into how genetics and religious beliefs together play a significant role in shaping the decisions of those faced with abnormal pregnancies.
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