The use of tracheostomy with invasive ventilation (TIV) for amyotrophic lateral sclerosis (ALS) is challenging and raises the most delicate questions among the different stakeholders. The article is based on published research and the clinical experience in Norway. The four basic principles of heath care ethics are considered: beneficence, exploring the ambivalence between maximizing life-expectancy against the best quality of life and the risks of becoming locked-in; nonmaleficence looking at the criteria for withdrawal of ventilation, difficulties in assessing and considering quality of life, assessment of cognitive function, and the issues burden and the conflicting feelings of caregivers; the discussion of autonomy principle considers cognitive and behavioral impairment, and dependent relationship of caregivers; the issues of justice lead to the debate about the dichotomous relationship between the distribution of scarce resources and the moral need to provide the best care.
This paper provides a very good analysis of the ethical challenges during the complex decision-making process of TIV in ALS patients and how this affects and is affected by the perspective of the different stakeholders.
Magelssen M, Holmøy T, Andreas Horn M, Arne Fondenæs O, Dybwik K, Førde R. Ethical challenges in tracheostomy-assisted ventilation in amyotrophic lateral sclerosis. Journal of Neurology, November 2018, Volume 265, Issue 11, pp 2730-2736. doi.org/10.1007/s00415-018-9054-x