Critical decisions for critically ill infants: principles, processes, problems

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Deciding what is best for a critically ill infant can be fraught, particularly if the question before the parent, healthcare professional or judge is “to treat or not to treat?” We explore the courts’ dealings with cases in which this ethico-legal question has been posed, inspired by Margaret Brazier’s work in this context with the Nuffield Council on Bioethics. Specifically, we consider whether the clinical ethics committee (CEC) might improve the principles and processes by which resolution is achieved. The principle might appear straightforward: decisions must rest on the “best interests” of the infant. Yet this cardinal legal principle can have diverse ethical interpretations, such that the best interests of an infant are neither self-evident nor incontestable. When deciding, doctors should apparently engage in shared decision-making with parents, with the courts stepping in if agreement fails to materialise. Yet, how – or whether – consensus is achieved is also open to question, as is the role that the courts play when consensus cannot be found.
These questions of principle and process inevitably introduce ethical questions, whose answers apparently require ethical sensitivity. Are the courts equipped to bear the moral load? Perhaps CECs, increasingly available across the United Kingdom (UK), might have a role to play, since their functions include providing advice on ethically difficult situations. In assessing this service, we will not only advance normative arguments, but also make reference to the views of those closest to the dilemmas that can arise on the paediatric intensive care unit (PICU). The findings we report indicate variation in the perceived effectiveness of CECs, obstacles to non-medics’ access to CECs, and questions about the expertise and authority of committee members. Such insights suggest that work identifying and disseminating best practice is needed if clinical ethics committees are to deliver on their apparent promise.
Original languageEnglish
Title of host publicationPioneering healthcare law
Subtitle of host publicationessays in honour of the work of Margaret Brazier
EditorsC Stanton, T Hervey, A Farrell, A Mullock
Number of pages13
Publication statusPublished - 2016


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