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Spinal muscular atrophy type 1: Is long-term mechanical ventilation ethical?
Ryan, Monique Kilham, Henry Tobin, Bernadette Jacobs, Stephen Isaacs, David
Ryan, Monique
Kilham, Henry
Tobin, Bernadette
Jacobs, Stephen
Isaacs, David
Abstract
We present a baby with spinal muscular atrophy type 1, an inherited disorder causing progressive weakness, leading to complete paralysis of respiratory, facial and limb muscles. Without intervention, death occurs in infancy due to respiratory failure. Mechanical ventilatory support can prolong life, but the child’s quality of life is highly debatable. We discuss the appropriateness of initiating and continuing intensive care for this child and others in a similar position.
Keywords
autonomy, competence, end‐of‐life, futility, quality of life
Date
2007
Type
Journal article
Journal
Journal of Paediatrics and Child Health
Book
Volume
43
Issue
4
Page Range
237-242
Article Number
ACU Department
Plunkett Centre for Ethics
Faculty of Theology and Philosophy
Faculty of Theology and Philosophy
Collections
Relation URI
Source URL
Event URL
Open Access Status
License
File Access
Controlled