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Ethical aspects of home long term ventilation in children with neuromuscular disease
1Royal Brompton Hospital, Sydney Street, London SW3 6NP UK. a.simonds@rbht.nhs.uk
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.
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