title: Deficiencies and Missed Opportunities to Formulate Clinical Guidelines in Australia for Withholding or Withdrawing Life-Sustaining Treatment in Severely Disabled and Impaired Infants.
abstract: This paper examines the few, but important legal and coronial cases concerning withdrawing or withholding life-sustaining treatment from severely disabled or critically impaired infants in Australia. Although sparse in number, the judgements should influence common clinical practices based on assessment of "best interests" but these have not yet been adopted. In particular, although courts have discounted assessment of "quality of life" as a legitimate component of determination of "best interests," this remains a prominent component of clinical guidelines. In addition, this paper highlights the lack of uniform clinical guidelines available to medical professionals and parents in Australia when making end-of-life decisions for severely ill infants. Thus, it is argued here that there is a need for an overarching prescriptive uniform framework or set of guidelines in end-of-life decision-making for impaired infants. This would encourage greater transparency, consistency, and some degree of objectivity in an area that often appears subjective.
authors.affiliation: Deakin University, Melbourne, VIC, Australia. neera.bhatia@deakin.edu.au.
authors.forename: Neera
authors.initials: N
authors.lastname: Bhatia
authors.affiliation: Paediatric Intensive Care Unit, Royal Children's Hospital, Melbourne, Australia.
authors.forename: James
authors.initials: J
authors.lastname: Tibballs
mesh_terms: D001315:Australia; D026686:Beneficence; D003657:Decision Making / Q000941:ethics*; D006233:Persons with Disabilities; D004992:Ethics, Medical; D006801:Humans; D007223:Infant; D007229:Infant Welfare; D007231:Infant, Newborn; D007600:Judgment / Q000941:ethics; D008020:Life Support Care / Q000941:ethics* / Q000331:legislation & jurisprudence; D010290:Parents; D010820:Physicians; D017410:Practice Guidelines as Topic / Q000592:standards*; D028761:Withholding Treatment / Q000941:ethics* / Q000331:legislation & jurisprudence
keywords: Clinical guidelines; End-of-life care; End-of-life treatment for infants; Medical ethics; Withdrawal or withholding of life-sustaining treatment; “Best interests”