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- Title
Spinal muscular atrophy type I: Do the benefits of ventilation compensate for its burdens?
- Authors
Gray, Kelly; Isaacs, David; Kilham, Henry A; Tobin, Bernadette
- Abstract
We report the progress of an 8-year-old child with spinal muscular atrophy ( SMA) type 1. The parents elected in infancy that the child should be on long-term ventilation, but all attempts to establish this care at home have failed, so the child remains ventilated in the hospital. The leader of the long-term ventilation team reports on the child's progress and describes a week in the child's life. Two paediatricians argue that the benefits of long-term ventilation have not and do not compensate the child for the burdens imposed on her by this treatment and explain why they would not support the withdrawal of long-term ventilation now. They argue that long-term ventilation might have been avoided by applying to a court of law when the child was an infant. An ethicist discusses ethical aspects of decision-making in SMA type 1.
- Subjects
ARTIFICIAL respiration; SPINAL muscular atrophy; MEDICAL ethics; DECISION making; QUALITY of life
- Publication
Journal of Paediatrics & Child Health, 2013, Vol 49, Issue 10, p807
- ISSN
1034-4810
- Publication type
Article
- DOI
10.1111/jpc.12386