title: Ethical aspects of home long term ventilation in children with neuromuscular disease.
abstract: 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.
authors.affiliation: Royal Brompton Hospital, Sydney Street, London SW3 6NP UK. a.simonds@rbht.nhs.uk
authors.forename: Anita K
authors.initials: AK
authors.lastname: Simonds
mesh_terms: D002648:Child; D003657:Decision Making; D026690:Ethics, Clinical; D006801:Humans; D009134:Muscular Atrophy, Spinal / Q000628:therapy; D020388:Muscular Dystrophy, Duchenne / Q000628:therapy; D009468:Neuromuscular Diseases / Q000628:therapy*; D011788:Quality of Life; D012121:Respiration, Artificial / Q000941:ethics*; D013997:Time Factors