This study investigated the prenatal decision-making processes and birth plans for pregnancies where perinatal palliative care was a considered option following a diagnosis of major fetal anomalies. Conducted across nine multidisciplinary centers for prenatal diagnosis in the Paris-Ile-de-France region between 2015 and 2016, the prospective observational study included cases with severe and incurable fetal conditions eligible for termination of pregnancy (TOP). However, in these specific instances, discussions involved the potential limitation of life-sustaining treatments for the neonate.
Researchers collected data on prenatal diagnoses, the decision-making process, birth plan types, birth characteristics, pregnancy progression, and neonatal outcomes. The primary focus was to determine the final decisions reached after antenatal discussions. Out of 736 ongoing pregnancies with diagnoses of severe fetal conditions eligible for TOP, perinatal palliative care was discussed in 102 (13.9%) cases, involving 106 infants. Multidisciplinary discussions occurred in 93.4% of these palliative care considerations. Prenatal birth plans that included life-sustaining treatment limitation and comfort care were formulated in 9.9% of all 736 pregnancies. The most common reason for planning palliative care at birth was the anticipation of inevitable short-term death, accounting for 53.4% of palliative care plans. Notably, 71.7% of the 106 infants were born alive, and 17% were still alive at the last follow-up, including four infants with a pre-planned perinatal palliative care approach.
The study concluded that perinatal palliative care, within the context of severe and incurable fetal disorders identified through prenatal care diagnosis, is considered in a limited subset of cases. It is not broadly seen as a universal substitute for termination of pregnancy, even when facing diagnoses of major fetal anomalies. These findings highlight the complexities of prenatal decision-making and the nuanced role of perinatal palliative care in managing pregnancies complicated by severe fetal conditions identified through Perinatal Care Diagnosis.
