Ethical challenges in tracheostomy-assisted ventilation in amyotrophic lateral sclerosis
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.
KeywordsAmyotrophic lateral sclerosis Ethics Beneficence Invasive ventilation Patient autonomy Tracheostomy
Compliance with ethical standards
Conflicts of interest
Dr. Magelssen has received a fee for a lecture for Sanofi-Aventis. Dr. Holmøy has received unrestricted research grants from The Norwegian ALS foundation.
Ethics approval was not required for this study as it did not involve the generation of new data.
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