Fetal medicine specialist experiences of providing a new service of termination of pregnancy for fatal fetal anomaly: a qualitative study

Objective To explore fetal medicine specialists' experiences of caring for parents following a diagnosis of fatal fetal anomaly (FFA) during the implementation of termination of pregnancy (TOP) for FFA for the first time. Design Qualitative study. Setting Fetal medicine units in the Republic of Ireland. Population Ten fetal medicine specialists from five of the six fetal medicine units. Methods nvivo 12 assisted in the thematic analysis of semi-structured in-depth face-to-face interviews. Main outcome measures Fetal medicine specialists' experiences of prenatal diagnosis and holistic management of pregnancies complicated by FFA. Results Four themes were identified: 'not fatal enough', 'interactions with colleagues', 'supporting pregnant women' and 'internal conflict and emotional challenges'. Fetal medicine specialists feared getting an FFA diagnosis incorrect because of media scrutiny and criminal liability associated with the TOP for FFA legislation. Challenges with the ambiguous and 'restrictive' legislation were identified that 'ostracised' severe anomalies. Teamwork was essential to facilitate opportunities for learning and peer support; however, conflict with colleagues was experienced regarding the diagnosis of FFA, the provision of feticide and palliative care to infants born alive following TOP for FFA. Participants reported challenges implementing TOP for FFA, including the absence of institutional support and 'stretched' resources. Fetal medicine specialists experienced internal conflict and a psychological burden providing TOP for FFA, but did so to 'provide full care for women'. Conclusions Our study identified challenges regarding the suitability of the Irish legislation for TOP for FFA and its rapid introduction into clinical practice. It illustrates the importance of institutional and peer support, as well as the need for supportive management, in the provision of a new service. Tweetable abstract The implementation of termination services for fatal fetal anomaly is complex and requires institutional support.