Russell J A
Department of Neurology, Tufts University School of Medicine, Lahey Hitchcock Clinic, Burlington, MA 01805, USA.
J Neurol. 1998 Aug;245 Suppl 2:S4-6; discussion S29. doi: 10.1007/pl00014808.
Amyotrophic lateral sclerosis (ALS) is universally fatal. Technological advances have provided a means to impact upon, without radically improving, the natural history of the disease. In addition, we now have the capability of potentially identifying patients who are pre-symptomatic carriers of the rare heritable forms of the disease. These capabilities provide the basis for the numerous ethical dilemmas that face patients, physicians, and agencies responsible for health care expenditures; dilemmas that can only be amplified between cultures. This paper attempts to address some of the major ethical issues germane to the care of ALS patients. It discusses the emergence of autonomy as the reigning principle of medical ethics in the United States and its potential conflict with the ethical dilemma of limited resource allocation. Finally, it attempts to compare and contrast, in an admittedly anecdotal and fragmentary fashion, the perspective of other cultures regarding the care of ALS patients.
肌萎缩侧索硬化症（ALS）是一种致命的疾病。技术进步为在不从根本上改善疾病自然史的情况下对其产生影响提供了一种手段。此外，我们现在有能力潜在地识别出那些患有罕见遗传性形式疾病的无症状携带者。这些能力为患者、医生以及负责医疗保健支出的机构所面临的众多伦理困境奠定了基础；而这些困境在不同文化之间只会被放大。本文试图探讨与ALS患者护理相关的一些主要伦理问题。它讨论了在美国，自主性作为医学伦理的主导原则的出现及其与资源有限分配的伦理困境之间的潜在冲突。最后，本文试图以一种公认的轶事性和碎片化的方式，比较和对比其他文化对ALS患者护理的看法。
