Centre for Medical Ethics, Institute of Health and Society, University of Oslo, PB 1130, Blindern, 0318, Oslo, Norway.
Department of Neurology, Akershus University Hospital, Lørenskog, Norway.
J Neurol. 2018 Nov;265(11):2730-2736. doi: 10.1007/s00415-018-9054-x. Epub 2018 Sep 14.
The special nature of amyotrophic lateral sclerosis (ALS) and tracheostomy with invasive ventilation (TIV) leads to challenges that can be difficult in two senses: not only to handle well, but also to discuss with patients and other involved stakeholders. Because of the delicate nature of interpersonal relations and communication in ALS, some of the downsides to TIV may almost take on a nature of taboo, making them difficult to raise for open discussion. Yet these ethical challenges are important to be aware of, not only for health professionals and managers but, arguably, also for patients and next of kin. They are important also for a wider professional and societal debate about whether and to whom TIV should be offered. In this paper we highlight and examine ethical challenges in TIV for ALS, with a special emphasis on those that are hard to discuss openly and that therefore might fail to be addressed. The analysis is structured by the four core principles of healthcare ethics: beneficence, nonmaleficence, respect for patient autonomy, and justice.
肌萎缩侧索硬化症（ALS）的特殊性质和有创通气的气管切开术（TIV）带来了一些挑战，这些挑战在两个方面都很困难：不仅难以处理，而且难以与患者和其他相关利益相关者进行讨论。由于 ALS 中人际关系和沟通的微妙性质，TIV 的一些缺点几乎具有禁忌的性质，使得它们难以公开讨论。然而，这些伦理挑战不仅对卫生专业人员和管理人员很重要，而且可以说对患者和近亲也很重要。它们对于更广泛的专业和社会辩论也很重要，即是否以及向谁提供 TIV。本文重点介绍并探讨了 ALS 中 TIV 的伦理挑战，特别强调了那些难以公开讨论且因此可能无法解决的挑战。分析的结构是通过医疗保健伦理的四个核心原则：善行、不伤害、尊重患者自主权和正义。
