Determine how neonatologists and bioethicists conceptualize the Best Interests Standard (BIS), and how each group applies the BIS when determining the ethical appropriateness of end of life decisions.
A self-administered survey which asked participants to rank on a 7-point Likert-type scale the ethical appropriateness of forgoing life sustaining therapy (LST) in eight clinical scenarios common to the Neonatal ICU (NICU) and how they conceptualized the BIS in relation to the effects on the family. The survey was modified in response to feedback from a pilot survey, ported to Survey Monkey, and was sent to members of the Perinatal Section of the American Academy of Pediatrics and the American Society for Bioethics and Humanities . Standard demographic data was also collected.
A total of 666 neonatologists and 242 ethicists responded. Neonatologists split on whether they conceptualized the BIS as being either exclusively concerned with the direct effects on the infant and whether the infant’s interests were inextricably linked with those of the family (median responses 1 with an interquartile range (IQR) of -1 to 2 and -0.5 to 2 respectively). They rejected a conceptualization wherein the effects on the family may place limits on their obligation to the infant (median response -1 with an IQR of -2 to 1). The ethicists agreed to a conceptualization that the infant’s interests and those of the family are inextricably linked (median response 2 with an IQR of 0 to 2). They were neutral (median 0 with an IQR of -2 to 2) on whether the effect on the family could place a limit to their obligation to the infant, and rejected the conceptualization of the BIS as being infant-specific (median response -1 with an IQR of -2 to 2). In response to the questions on the appropriateness of forgoing LST, the ethicists were either less likely or equally likely to agree with forgoing LST than the neonatologists, with the exception of the least severe case, an unexpected result.
Ethicists most strongly endorse a conceptualization of the BIS that includes the effects on the family, while rejecting one that requires the exclusion of all effects on them. Neonatologists evenly split between these two conceptualizations, while rejecting one that allows the familial effects to place a limit on the family’s obligation to the infant. Ethicists seem less likely to agree with forgoing LST than the neonatologists, with the exception of the least severe case. These data suggest that even though most neonatologists and bioethicists use similar language there are important differences that may subtly influence how families are counseled regarding end of life decision making.