Saint Louis University, USA.
Nurs Ethics. 2020 Feb;27(1):16-27. doi: 10.1177/0969733019840745. Epub 2019 Apr 28.
This article argues that while the presence and influence of "futility" as a concept in medical decision-making has declined over the past decade, medicine is seeing the rise of a new concept with similar features: suffering. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like "futility," claims of patient "suffering" have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about quality of life into decision-making. And like "futility," it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering.
本文认为，虽然“无效性”作为医学决策中的一个概念，在过去十年中已经有所减少，但医学领域正在出现一个具有类似特征的新概念：痛苦。与无效性一样，痛苦似乎具有一致的含义，但实际上，这个概念在口语中被用来指代非常不同的体验。与“无效性”一样，患者“痛苦”的说法被用来（也许有时是有意识的，但大多数情况下是无意识的）将关于生活质量的价值判断偷偷塞进决策中。与“无效性”一样，我们有必要认识到需要使用新的、更清晰的术语。本文将专门讨论儿科中患者痛苦的二手说法，但这些结论也可以类似地应用于由代理人做出的针对成人的医疗决策。虽然我将论证，像无效性一样，痛苦不是做出单方面治疗决策的充分理由，但我也将论证，患者痛苦的说法不能被忽视，而且它们几乎总是需要某种回应。在最后一节中，我提供了一些实用的建议，说明如何回应患者痛苦的说法。
