title: [When death is an act of care: refusing life support for children].
abstract: This paper analyzes a court case involving parents' refusal of life support measures for an 8-month-old infant with spinal muscular atrophy type I, a fatal degenerative genetic disease. The parents filed for a court injunction to ensure that the infant would not be submitted to mechanical ventilation in case of respiratory distress. The Brazilian courts recognized the parents' right to refuse life support measures, and the infant died a week after the ruling. The parents' request was to guarantee their right to avoid medical procedures that would not alter the infant's clinical prognosis. The author of this paper was called on to provide expert ethical counsel in this case, and the article is a modified and condensed version of the author's report to the presiding judge.
authors.affiliation: Programa de Pós-graduação em Política Social, Universidade de Brasília, Brasília, Brasil. anis@anis.org.br
authors.forename: Debora
authors.initials: D
authors.lastname: Diniz
mesh_terms: D001938:Brazil; D006801:Humans; D007223:Infant; D008297:Male; D033282:Parental Consent; D012297:Right to Die / Q000941:ethics / Q000331:legislation & jurisprudence*; D014897:Spinal Muscular Atrophies of Childhood; D016312:Treatment Refusal / Q000941:ethics / Q000331:legislation & jurisprudence*