Tosello B
UMR 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.
Arch Pediatr. 2016 Sep;23(9):983-9. doi: 10.1016/j.arcped.2016.06.011. Epub 2016 Jul 26.
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.
严重的先天性或形态学异常是婴儿发病和死亡的主要原因之一。其中一些产前诊断出的病症与出生后存活不兼容。在这种情况下，一些女性选择继续妊娠。随后，围产期姑息治疗似乎是针对此类情况的一个建设性应对措施。在国际层面，这是一种存在决策困境（预后不确定性、延长生存期以及对婴儿的情感依恋）的新临床实践。可能有必要确定会影响这些伦理冲突的因素。由于没有全国性数据，我们探讨了可能影响父母不顾患有致命病症的新生儿出生后状况的不确定性而要求继续妊娠的观念和专业做法。这一探索旨在质疑和辩论当前规范，尤其是在医学终止妊娠方面，讨论影响新生儿姑息治疗决策和专业做法的困境与分歧。对于如何在继续妊娠的请求中找到一个合理答案进行反思也很有必要，尽管对于患有致命异常的新生儿活产情况下出生后时期固有的不确定性。
