Abstract

Terminally ill patients in 10 states plus Washington, D.C. have the right to take prescribed medications to end their lives (medical aid in dying). But otherwise-eligible patients with neuromuscular disabilities (ALS and other illnesses) are excluded if they are physically unable to “self-administer” the medications without assistance. This exclusion is incompatible with disability rights laws that mandate assistance to provide equal access to health care. This contradiction between aid-in-dying laws and disability rights laws can force patients and clinicians into violating one or the other, potentially creating an underclass of patients denied medical care that is available to those with other (less physically disabling) terminal illnesses. The immediacy of this issue is demonstrated by a lawsuit in Federal court filed in August 2021, requesting assistance in self-administration for terminally ill patients with neuromuscular diseases. This paper discusses the background of this conflict, the ethical issues at the heart of the dilemma, and recommends potential remedies.

 抽象的

10 个州以及华盛顿特区的绝症患者有权服用处方药物来结束生命（临终医疗救助）。但是，如果患有神经肌肉残疾（ALS 和其他疾病）的其他符合条件的患者在身体上无法在没有帮助的情况下“自我管理”药物，则被排除在外。这种排除与残疾人权利法不相容，该法要求提供援助以提供平等的医疗保健机会。助死法和残疾人权利法之间的这种矛盾可能会迫使患者和临床医生违反其中一项或另一项规定，从而可能导致底层患者无法获得为患有其他（身体残疾程度较轻）绝症的患者提供的医疗服务。 2021 年 8 月向联邦法院提起的一项诉讼证明了这个问题的紧迫性，该诉讼要求为患有神经肌肉疾病的绝症患者提供自我管理方面的协助。本文讨论了这场冲突的背景、困境核心的道德问题，并提出了可能的补救措施。