Much of the commentary in the wake of the Charlie Gard litigation was aimed at apparent shortcomings of the law. These include concerns about the perceived inability of the law to consider resourcing issues, the vagueness of the best interests test and the delays and costs of having disputes about potentially life-sustaining medical treatment resolved by the courts. These concerns are perennial ones that arise in response to difficult cases. Despite their persistence, we argue that many of these criticisms are unfounded. The first part of this paper sets out the basic legal framework that operates when parents seek potentially life-sustaining treatment that doctors believe is against a child’s best interests, and describes the criticisms of that framework. The second part of the paper suggests an alternative approach that would give decision-making power to parents, and remove doctors’ ability to unilaterally withhold or withdraw life-sustaining treatment that they regard is futile. This proposal is grounded in several values that we argue should guide these regulatory choices. We also contend that the best interests test is justifiable and since the courts show no sign of departing from it, the focus should be on how to better elucidate the underlying values driving decisions. We discuss the advantages of our proposed approach and how it would address some of the criticisms aimed at the law. Finally, we defend the current role that the judiciary plays, as an independent state-sanctioned process with a precedent-setting function.
- legal aspects
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Contributors All authors discussed the content of the article. EC produced an outline. LW and BPW refined the outline. EC was responsible for the manuscript preparation and LW and BPW contributed to the writing. All authors edited the manuscript and approved the final version.
Funding EC was supported by an Australian Government Research Training Program Scholarship and a National Health and Medical Research Council Centre of Research Excellence in End-of-Life Care Top-Up Scholarship.
Competing interests LW is an associate editor of the Journal of Medical Ethics.
Provenance and peer review Not commissioned; externally peer reviewed.
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