21 Parental Involvement in Prenatal Counseling for Infants at The Margin of Viability: An International Comparison

Abstract

Background: The inclusion of parents in the difficult decision-making inherent in prenatal counseling for infants at the margin of viability is internationally debated. However, there is little information on how much parental decision-making is incorporated into these conversations. This survey explores the extent of parental involvement in prenatal consults in two countries.Objective: To compare prenatal consultation attitudes and practices toward parental decision-making of New England (NE), USA and Swedish neonatologists for a hypothetical case of an infant at the margin of viability (23.5–24.5 weeks gestation, imminent delivery).Methods: An anonymous, self-administered survey was developed and distributed in English to all practicing neonatologists in 6 New England states and the country of Sweden (S).Results: For the New England portion, 148/175 surveys were completed (response rate 85%). For the Swedish portion, 88/128 surveys were completed (response rate 69%). Compared to their US counterparts, Swedish neonatologists less frequently report the belief that parents should be involved in making resuscitations decisions (NE 77% v S 26%, p<.0001). The practice of actually including the parents in the final decision regarding resuscitation is also reported less frequently in Sweden than in New England (NE 41% v S 10%, p<.0001). When asked to rank their most important role as a neonatologist, both countries ranked the provision of factual data first (NE 58% v S 55%). In Sweden communicating that resuscitation decisions will be made in the delivery room was more frequently ranked second (NE 28% v S 62%, p<.0001), while in New England assisting parents in weighing the risks and benefits of treatment options was more frequently ranked second (NE 56% v S 16%, p<.0001). New England and Swedish neonatologists report similar rates of asking about prior experiences with death and dying (NE 70% v S 68%) and prior experiences with premature or handicapped children (NE 91% v S 87%). However, different rates are reported when asking about parental interpretation of good quality of life (NE 73% v S 55%, p<.06) and desired parental role in the decision-making process (NE 89% v S 69%, p<.0001)Conclusion: Neonatologists in the US and Sweden report differences in the amount of parental input they seek in making decisions regarding resuscitation of infants at the border of viability.