Smyth A, Riedl M, Kimura R, Olick R, Siegler M
University of Chicago and MacLean Center for Clinical Medical Ethics, IL 60637-1470, USA.
J Neurol Sci. 1997 Oct;152 Suppl 1:S93-6. doi: 10.1016/s0022-510x(97)00253-0.
In an era where life-sustaining technology offers physicians unprecedented powers to prolong survival in terminal illness, the question of how end of life decisions are made has become a major subject of study and debate. Amyotrophic lateral sclerosis (ALS) is a disease in which physical ability declines while mental capacity most often remains intact. Since most patients with ALS die of respiratory failure, a distinguishing feature of this disease is whether a patient is offered and accepts a chance to go on long-term mechanical ventilation. This unusual feature makes ALS a compelling model for studying end of life decisions in different countries. This paper reviews the literature and presents preliminary data on how end of life decisions in ALS are made in the US, Great Britain, and Japan. We address this issue by examining how cultural differences in truth-telling and informed consent, societal differences in attitudes toward the use of artificial life support, and legal differences in the role and status of advance directives in each country influenced decisions in the following three groups of patients: (1) the mentally competent; (2) mentally incompetent patients who previously completed advance directives when competent; and (3) mentally incompetent patients who have not provided advance guidance about their wishes.
在一个维持生命的技术赋予医生前所未有的能力来延长绝症患者生命的时代，关于如何做出临终决定的问题已成为研究和辩论的一个主要课题。肌萎缩侧索硬化症（ALS）是一种身体能力下降而心智能力大多保持完好的疾病。由于大多数ALS患者死于呼吸衰竭，这种疾病的一个显著特征是患者是否被提供并接受长期机械通气的机会。这一不同寻常的特征使ALS成为研究不同国家临终决定的一个引人注目的模型。本文回顾了相关文献，并呈现了关于美国、英国和日本如何做出ALS临终决定的初步数据。我们通过考察以下三个方面来探讨这个问题：每个国家在告知真相和知情同意方面的文化差异、对使用人工生命支持态度的社会差异以及预先指示的作用和地位的法律差异如何影响以下三组患者的决定：（1）心智健全者；（2）先前心智健全时完成预先指示的心智不健全患者；（3）未就其意愿提供预先指导的心智不健全患者。
