Complexity of consenting for medical termination of pregnancy: prospective and longitudinal study in Paris

BACKGROUND: We analyzed the patients’ perception of prenatal diagnosis of fetal cardiac pathology, and the reasons for choosing to continue with pregnancy despite being eligible to receive a medical termination of pregnancy. We also identified the challenges, the motives interfering in decision-making, and the consequences of the decisions on pregnancy, child and mother. METHODS: This descriptive, prospective and longitudinal study was conducted in France, amongst pregnant women who wished to continue their pregnancy despite an unfavorable medical advice (incurable fetal cardiac pathologies). Socio-demographic data were collected through a questionnaire. Such questionnaire covered information assessing the parents/mother’s perception of prenatal diagnosis, and medical termination of pregnancy, their interpretation of the established diagnosis and their motives for not considering pregnancy termination. RESULTS: 72 eligible patients were analyzed over one year: mean age 33 ± 6.89 years, 47 patients had already given birth to ≥1 healthy child. Mean gestational age at the detection of fetal cardiac pathologies was 30 ± 4.37 weeks of amenorrhea. Patients decided to keep the child after 3 ± 1.25 consultations. 56 (77.78%) patients made their decision with their husbands and 16 made their decision alone. Reasons for declining the medical termination were culpability and responsibility (n = 36), ideologies and convictions (n = 24), mistrust and hope (n = 12). Newborns of 67 patients died with a mean survival duration of 38 days. CONCLUSIONS: Patient informed consent should be sought before any decision in neonatology, even if conflicting with the medical team’s knowledge and the pregnant mother’s benefits. Decisions to accept or decline pregnancy termination depend on the patients’ psychological character, ideologies, convictions, and mistrust in the diagnosis/prognosis, or hope in the fetus survival. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12910-018-0270-9) contains supplementary material, which is available to authorized users.