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.

Australia

“…This supported the notion that evidence-knowledge-based education for neonatal palliative care has the potential to improve clinician confidence, through an increase in knowledge and positive attitudes toward neonatal palliative care delivery. One of the difficulties in Australia, however, has been the lack of available clinical guidelines that provide guidance on the withdrawal or withholding of aggressive curative treatment of babies so that a palliative model of care can be adopted (Bhatia and Tibballs 2015). The paucity of available guidance did not appear to have impacted upon a willingness of Australian neonatal units to engage with parents in treatment limitation discussions (TLDs) (withdrawal of life-sustaining treatment).…”

“…As previously discussed, Bhatia and Tibballs (2015) have suggested the guidelines for withholding and withdrawing life-sustaining treatment for babies in Australia are inadequate. This is coupled with a lack of common law to support the withdrawal of such measures: this makes the instigation of palliative care as an option for babies who are not expected to survive.…”

Decision‐making at the borderline of viability: Who should decide and on what basis?

“…Some ethicists favour the Harm Principle, according to which parental authority should only ever be curtailed when parental decisions will cause significant harm to a child . In cases where parental preferences for treatment raise serious concerns, it is the clinician's duty to advocate for and protect the child by over‐riding parental decisions or seeking the court's assistance in determining who should make the decision …”

“…28,42 In cases where parental preferences for treatment raise serious concerns, it is the clinician's duty to advocate for and protect the child by over-riding parental decisions or seeking the court's assistance in determining who should make the decision. 43 I argue that over-riding parental decisions to forego treatment for babies at the borderline of viability where there is doubt about the prognosis in an effort to advocate for the baby cannot reasonably be justified and that such efforts could have disastrous effects.…”