[Is the refusal of invasive or noninvasive ventilation in a child with spinal muscular atrophy ethically justified?]

Abstract

We report about an infant who was diagnosed with spinal muscular atrophy type 1 (Werdnig-Hoffmann) at the age of 7 weeks. In a detailed discussion with the physicians the parents decided against mechanical ventilation in the event of either acute or chronical respiratory failure. During care at home all palliative actions were taken to optimize the quality of life for the child. The boy died at the age of 7 months at home. Whether continuous mechanical ventilation in a child with spinal muscular atrophy type 1 should be the individual decision of the parents or whether it should never be offered by the physicians is discussed controversially in the present medical literature.

• Authors: Martina Radner, Annette Henry
• Journal: Wiener medizinische Wochenschrift (1946) (Wien Med Wochenschr) Vol. 168 Issue 7-8 Pg. 189-192 (May 2018) ISSN: 1563-258X [Electronic] Austria
• Vernacular Title: Ist die Ablehnung von invasiver oder noninvasiver Beatmung bei einem Kind mit spinaler Muskelatrophie aus ethischer Sicht vertretbar?
• PMID: 29450782 (Publication Type: Case Reports, Journal Article)

Topics

• Fatal Outcome
• Humans
• Infant
• Infant, Newborn
• Male
• Noninvasive Ventilation
• Quality of Life
• Respiration, Artificial
• Spinal Muscular Atrophies of Childhood