Prenatal consultation practices at the border of viability: a regional survey.

OBJECTIVE: We undertook a survey of all practicing neonatologists in New England to determine their attitudes and practices regarding prenatal consultations for infants at the border of viability.

METHODS: A self-administered anonymous survey, mailed to every practicing neonatologist in the 6 Northeast states of Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont, explored respondent attitudes and practices with respect to a hypothetical clinical scenario of a prenatal consultation for an infant at the border of viability.

RESULTS: Our final sample included 149 surveys from 175 eligible neonatologists, giving a response rate of 85%. Seventy-seven percent of respondents indicated that they thought neonatologists and parents should make the decision jointly to withhold resuscitation. Only 40% indicated that the decision actually is made by both parties. A majority of neonatologists (58%) saw their primary role during the prenatal consultation as providing factual information to the parents. Far fewer (27%) thought that their main role was to assist the parents in weighing the risks and benefits of various management options. A majority of respondents indicated that parental understanding of the mother's current medical situation (96%), desired parental role (77%), and parental prior experience with premature or handicapped children (64%) were frequently or always discussed. However, far fewer respondents reported frequently or always asking about parental interpretations of a "good quality of life" (42%), parental prior experiences with death or dying (30%), and parental religious or spiritual beliefs (25%). Short-term outcomes and complications such as the need for surfactant/respiratory distress syndrome (89%) and the risk of intraventricular hemorrhage (81%) were discussed more extensively than long-term outcomes such as motor delays or cerebral palsy (68%), cognitive delays or learning disabilities (63%), and chronic lung disease (61%). Multivariate logistic regression analysis revealed 2 characteristics that were significant predictors of shared decision-making for the final decision regarding resuscitation in the delivery room for extremely premature infants, ie, believing that the main role of the neonatologist during prenatal consultations is to help parents weigh the risks and benefits of each resuscitation option (odds ratio: 4.1; 95% confidence interval: 1.6-10.9) and having >10 years of clinical experience (odds ratio: 3.6; 95% confidence interval: 1.5-8.8).

CONCLUSIONS: Overall, our results showed that neonatologists are quite consistent in discussing clinical issues but quite varied in discussing social and ethical issues. If neonatologists are to perform complete prenatal consultations for infants at the border of viability as described by the latest American Academy of Pediatrics guidelines, then they will be expected to address quality-of-life values more robustly, to explain long-term outcomes, and to incorporate parental preferences during their conversations. Potential barriers to shared decision-making have yet to be outlined.