Spinal muscular atrophy type 1: Is long-term mechanical ventilation ethical?
Ryan, Monique, Kilham, Henry, Tobin, Bernadette, Jacobs, Stephen and Isaacs, David. (2007) Spinal muscular atrophy type 1: Is long-term mechanical ventilation ethical? Journal of Paediatrics and Child Health. 43(4), pp. 237 - 242. https://doi.org/10.1111/j.1440-1754.2007.01052.x
|Authors||Ryan, Monique, Kilham, Henry, Tobin, Bernadette, Jacobs, Stephen and Isaacs, David|
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|
|Journal||Journal of Paediatrics and Child Health|
|Journal citation||43 (4), pp. 237 - 242|
|Publisher||Blackwell Publishers Inc|
|Digital Object Identifier (DOI)||https://doi.org/10.1111/j.1440-1754.2007.01052.x|
|Page range||237 - 242|
|Place of publication||Australia|
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