Wilkinson Dominic, de Crespigny Lachlan, Xafis Vicki
Oxford Uehiro Centre for Practical Ethics, Faculty of Philosophy, University of Oxford, Oxford, UK; Robinson Institute, Discipline of Obstetrics and Gynaecology, University of Adelaide, Adelaide, South Australia, Australia.
Department of Obstetrics and Gynaecology, University of Melbourne, Blairgowrie, Victoria, Australia.
Semin Fetal Neonatal Med. 2014 Oct;19(5):306-11. doi: 10.1016/j.siny.2014.08.007. Epub 2014 Sep 5.
In clinical practice, and in the medical literature, severe congenital malformations such as trisomy 18, anencephaly, and renal agenesis are frequently referred to as 'lethal' or as 'incompatible with life'. However, there is no agreement about a definition of lethal malformations, nor which conditions should be included in this category. Review of outcomes for malformations commonly designated 'lethal' reveals that prolonged survival is possible, even if rare. This article analyses the concept of lethal malformations and compares it to the problematic concept of 'futility'. We recommend avoiding the term 'lethal' and suggest that counseling should focus on salient prognostic features instead. For conditions with a high chance of early death or profound impairment in survivors despite treatment, perinatal and neonatal palliative care would be ethical. However, active obstetric and neonatal management, if desired, may also sometimes be appropriate.
在临床实践以及医学文献中，诸如18三体综合征、无脑儿和肾缺如等严重先天性畸形常常被称为“致死性的”或“与生命不相容”。然而，对于致死性畸形的定义以及哪些病症应归入此类，尚无共识。对通常被认定为“致死性”的畸形的结局进行回顾发现，即便存活时间延长的情况很罕见，但仍有可能发生。本文分析了致死性畸形的概念，并将其与存在问题的“无意义”概念进行比较。我们建议避免使用“致死性”一词，并建议咨询应聚焦于显著的预后特征。对于那些即便经过治疗仍有很高的早期死亡几率或幸存者会有严重功能障碍的病症，围产期和新生儿姑息治疗是符合伦理道德的。然而，如果有需求，积极的产科和新生儿管理有时也可能是合适的。
