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极低孕周婴儿的临终决策:为何应避免为复杂决策制定简单规则。

End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided.

作者信息

Dupont-Thibodeau Amélie, Barrington Keith J, Farlow Barbara, Janvier Annie

机构信息

Department of Pediatrics and Clinical Ethics, University of Montreal; Neonatology and Clinical Ethics, Sainte-Justine Hospital, Montreal, Quebec, Canada H3T 1C5.

Department of Pediatrics, Sainte-Justine Hospital, University of Montreal, Montreal, Quebec, Canada.

出版信息

Semin Perinatol. 2014 Feb;38(1):31-7. doi: 10.1053/j.semperi.2013.07.006.

Abstract

Interventions for extremely preterm infants bring up many ethical questions. Guidelines for intervention in the "periviable" period generally divide infants using predefined categories, such as "futile," "beneficial," and "gray zone" based on completed 7-day periods of gestation; however, such definitions often differ among countries. The ethical justification for using gestational age as the determination of the category boundaries is rarely discussed. Rational criteria used to make decisions regarding life-sustaining interventions must incorporate other important prognostic information. Precise guidelines based on imprecise data are not rational. Gestational age-based guidelines include an implicit judgment of what is deemed to be an unacceptably poor chance of "intact" survival but fail to explore the determination of acceptability. Furthermore, unclear definitions of severe disability, the difficulty, or impossibility, of accurately predicting outcome in the prenatal or immediate postnatal period make such simplistic formulae inappropriate. Similarly, if guidelines for intervention for the newborn are based on the "qualitative futility" of survival, it should be explicitly stated and justified according to established ethical guidelines. They should discuss whether newborn infants are morally different to older individuals or explain why thresholds recommended for intervention are different to recommendations for those in older persons. The aim should be to establish individualized goals of care with families while recognizing uncertainty, rather than acting on labels derived from gestational age categories alone.

摘要

针对极早产儿的干预措施引发了许多伦理问题。“可存活期”的干预指南通常根据预先定义的类别对婴儿进行划分,例如根据完成的7天孕周将婴儿分为“无效”“有益”和“灰色地带”等类别;然而,这些定义在不同国家往往存在差异。很少有人讨论将胎龄作为类别界限判定依据的伦理合理性。用于做出维持生命干预决策的合理标准必须纳入其他重要的预后信息。基于不精确数据的精确指南是不合理的。基于胎龄的指南包含了对“完整”存活可能性被认为低到不可接受程度的隐含判断,但却没有探讨可接受性的判定。此外,严重残疾的定义不明确,在产前或产后即刻准确预测结果存在困难或不可能,这使得这种简单化的公式并不适用。同样,如果新生儿干预指南基于生存的“定性无效”,则应根据既定的伦理准则明确说明并给出理由。它们应该讨论新生儿在道德上是否与年龄较大的个体不同,或者解释为什么推荐的干预阈值与针对年龄较大者的建议不同。目标应该是在认识到不确定性的同时,与家庭共同确立个体化的护理目标,而不是仅依据胎龄类别得出的标签行事。

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