Ethical aspects of home long term ventilation in children with neuromuscular disease

Paediatr Respir Rev. 2005 Sep;6(3):209-14. doi: 10.1016/j.prrv.2005.06.003.


Increasing numbers of children and young adults are now receiving home ventilation. Whereas in some neuromuscular conditions the outcome and quality of life gains are clear cut; in others eg Spinal Muscular Atrophy Type I there are a few outcome studies with conflicting results and it is more difficult to balance the ethical concepts of beneficence, non-maleficence, autonomy and distributive justice. As a result there are widespread variations in the clinical management of these children. This article examines decision-making in these areas seen from the perspective of the individual, the family and society.

Publication types

  • Review

MeSH terms

  • Child
  • Decision Making
  • Ethics, Clinical*
  • Humans
  • Muscular Atrophy, Spinal / therapy
  • Muscular Dystrophy, Duchenne / therapy
  • Neuromuscular Diseases / therapy*
  • Quality of Life
  • Respiration, Artificial / ethics*
  • Time Factors