Termination counseling among US perinatal genetic counselors in the setting of second trimester fetal anomalies

Abstract

AbstractMany pregnant people learn of fetal anomalies in the second trimester and subsequently present to prenatal genetic counselors (PGCs) for counseling, including but not limited to a nuanced discussion about whether to continue or terminate pregnancy. In those who choose to terminate, the decision between dilation and evacuation (D&E) or induction is often one of patient preference and as such, is heavily influenced by the quality of counseling received. PGCs are expertly trained to provide values‐based counseling, yet little is known about their termination counseling practices, referral practice patterns, and perceived responsibilities in caring for this group of pregnant people. To gain this knowledge, we surveyed a national sample of PGCs in early 2022 and received 70 completed responses. The survey contained open‐ and closed‐ended questions. Data were analyzed using descriptive statistics, and free response data were analyzed using inductive content analysis. Eighty percent (n = 56) of respondents reported that <50% of their patients had previously received termination options counseling. Most strikingly, 15% of respondents provided termination counseling that was beyond their self‐identified comfort level. Scenario‐based questions assessed respondents' counseling practice patterns in seven real‐world situations, presented in order of decreasing severity for the fetus. Respondents were 50% less likely to provide termination options counseling to patients between the most lethal to the least lethal proposed fetal anomaly. The scenario‐based analysis revealed two distinct termination counseling approaches: (1) all options counseling with an explicit discussion of options to continue or terminate and (2) discretionary options counseling focused on identifying patient preferences to guide counseling and not explicitly stating all available options. This study highlights the need to ensure PGCs feel well‐trained to discuss the general features of second trimester pregnancy termination and, if unable to do so, to practice in systems with timely referral to providers well‐versed in the counseling about all methods of termination.