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Journal of Neurology

, Volume 265, Issue 11, pp 2730–2736 | Cite as

Ethical challenges in tracheostomy-assisted ventilation in amyotrophic lateral sclerosis

  • Morten Magelssen
  • Trygve Holmøy
  • Morten Andreas Horn
  • Ove Arne Fondenæs
  • Knut Dybwik
  • Reidun Førde
Original Communication

Abstract

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.

Keywords

Amyotrophic lateral sclerosis Ethics Beneficence Invasive ventilation Patient autonomy Tracheostomy 

Notes

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.

Ethical standards

Ethics approval was not required for this study as it did not involve the generation of new data.

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Centre for Medical Ethics, Institute of Health and SocietyUniversity of OsloOsloNorway
  2. 2.Department of NeurologyAkershus University HospitalLørenskogNorway
  3. 3.Institute of Clinical MedicineUniversity of OsloOsloNorway
  4. 4.Department of NeurologyOslo University HospitalOsloNorway
  5. 5.National Advisory Unit on Longterm Mechanical VentilationHaukeland University HospitalBergenNorway
  6. 6.Department of Anaesthesia and Intensive Care MedicineNordland HospitalBodøNorway
  7. 7.Nord UniversityBodøNorway

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