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Spinal muscular artrophy type I: Do the benefits of ventilation compensate for its burdens?
Gray, Kelly Isaacs, David Kilham, Henry Tobin, Bernadette Margaret
Gray, Kelly
Isaacs, David
Kilham, Henry
Tobin, Bernadette Margaret
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.
Keywords
Date
2013
Type
Journal article
Journal
Journal of Paediatrics and Child Health
Book
Volume
49
Issue
10
Page Range
807-812
Article Number
ACU Department
Plunkett Centre for Ethics
Faculty of Theology and Philosophy
Faculty of Theology and Philosophy
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Source URL
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Open Access Status
License
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Controlled