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[Perinatal palliative care in France: Who? Why? How?]
1UMR 7268 ADÉS, Aix-Marseille université/EFS/CNRS, espace éthique méditerranéen, hôpital adultes La Timone, 13005 Marseille, France; Service de soins intensifs et néonatologie, Assistance publique-Hôpitaux de Marseille, hôpital Nord, pôle femmes-parents-enfants, 13015 Marseille, France.
Abstract:
Severe congenital or morphologic anomalies are one of the main causes of infant morbidity and mortality. Some of these prenatally-diagnosed pathologies are incompatible with postnatal survival. In this context, some women choose to continue with pregnancy. Subsequently, perinatal palliative care seems to be a constructive answer to offer in such situations. At international level, this is a new clinical practice where decision dilemmas exist (prognostic uncertainty, prolonged survival, and attachment to the infant). It might be necessary to identify the factors that can affect these ethical tensions. With no national data, we explored the perceptions and professional practices that may influence parental requests for continuing with pregnancy, despite the uncertainty corresponding to the postnatal condition of a newborn with a lethal pathology. This exploration aims to question and debate current norms, especially in medical termination of pregnancy, discussing the dilemmas and divergences that affect decision-making and professional practices in neonatal palliative care. Reflection is also necessary on how to find an answer that can make sense within a request for continuation of pregnancy, despite the uncertainty inherent in the postnatal period in case of live birth of a newborn with a lethal abnormality.

