Spinal muscular artrophy type I: Do the benefits of ventilation compensate for its burdens?
Gray, Kelly, Isaacs, David, Kilham, Henry and Tobin, Bernadette Margaret. (2013) Spinal muscular artrophy type I: Do the benefits of ventilation compensate for its burdens? Journal of Paediatrics and Child Health. 49(10), pp. 807 - 812. https://doi.org/10.1111/jpc.12386
|Authors||Gray, Kelly, Isaacs, David, Kilham, Henry and Tobin, Bernadette Margaret|
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.
|Journal||Journal of Paediatrics and Child Health|
|Journal citation||49 (10), pp. 807 - 812|
|Publisher||Wiley-Blackwell Publishing Ltd.|
|Digital Object Identifier (DOI)||https://doi.org/10.1111/jpc.12386|
|Page range||807 - 812|
|Research Group||School of Philosophy|
|Place of publication||United Kingdom|
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