Decision-Making about Congenital Anomalies. How do women and their partners make the decision to continue or terminate a pregnancy following suspicion or diagnosis of a severe congenital anomaly?

Background : Around 2-3% of pregnancies are affected by a congenital anomaly. However, anomalies account for around 30% of neonatal mortality in the UK. Whilst the incidence and rates of detection are similar across socioeconomic groups, rates of termination following diagnosis of a severe anomaly are lower in more deprived areas. The reasons for this are unclear and parental decision-making following suspicion or diagnosis of a congenital anomaly is largely unexplored. Aims: To explore the decision-making processes following diagnosis of a congenital anomaly and offer insight into how variations in termination rates arise. Methods: Data from interviews with parents-to-be and clinicians, and recorded consultations were collated. Analysis was undertaken using a constant comparative based approach. Findings: Following diagnosis of a severe congenital anomaly, parents-to-be face the devastating decision of whether to continue or terminate the affected pregnancy. Four typologies of decision-making were identified. These were entitled: Consequential, where parents sought to ‘rationally’ evaluate the best outcome for themselves and the unborn, Absolute, where fundamental beliefs pre-determined the decision taken, Delay/Avoid, where no active decision was made, and parents therefore continued with the pregnancy, and Assess/Reassess. This fourth typology subsequently sub-divided into two groups, Choice Removed, where indecisive parents were ‘pushed’ by clinicians into terminating the pregnancy, and Choice Disturbed, where the breakdown of the parent-clinician relationship resulted in parents disengaging with the clinical environment thus continuing with the affected pregnancy. Each type of decision-making resulted in differing tensions with clinicians who sought enactment of an ‘ideal’ decision-making process. Conclusion: This study provides a valuable insight into the lived experiences of parents. With this comes a greater awareness of the variations in the pathways and processes followed. The recommendations contribute to the understanding of those who determine policy and those who practice within the field of fetal medicine.