Shared decision making in paediatric ICU – in the child’s best interests?”

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In western medical practice, patient-clinician collaboration is central to establishing a patient’s best interests. Where the patient is a child who has no antecedent wishes because of immaturity or illness, this collaboration still takes centre stage with the child’s parents as proxies. English law favours this process, and parents and clinicians must decide together what a child’s best interests are, with recourse to the courts if no agreement can be found. The most controversial of these disagreements centre upon situations where a child will survive if they are treated, but it is unclear if survival serves their interests. Because such decisions rely on judgements about the value and quality of life, controversy centres upon the lack of an authoritative decision maker, and, as such, collaboration seems an intuitive solution.

Concerns about parent-clinician collaboration.
The legal record shows only one case reaches the English courts each year, and we can surmise that most disputes are resolved privately between parents and clinicians. Little is known about how agreements are reached, and, while the primary consideration is intended to be the child, competing factors within the clinical environment have potential to confound attempts to keep the child’s welfare in focus. Current models of collaborative decision making based upon consensus and compromise may offer us a template by which to measure the success or failure of collaboration, but raise some concerns. Theoretical work by Benjamin, Moreno and, lately, Huxtable has centred on judges, ethics boards and policy committees, and it is unclear how much can be applied to disputes played out at the hospital bedside. Firstly, it is not clear if we can expect the degree of reflexivity and mutual respect these theoreticians demand from conflicting parties. Secondly, while consensus and compromise models of decision making promote the aims of liberal pluralism, and thus offer benefits to the decision making parties, these benefits primarily manifest at a societal level in cohesiveness and liberal toleration.

Moving the focus back to the child.
Liberal values may offer ethical reasons for a conventional model of doctor-patient collaboration, but contain no suggestion that collaboration helps us reach a better decision in moral matters. In paediatric decision making, it is therefore unclear what benefits are reaped by the child upon whom the decision is meant to be focused; indeed, by collaborating on these terms it is unclear if the collaboration process hinders rather than helps any attempt to remain focussed on the child’s interests. In this paper I lay out the position in English law, a position that has wider European resonance due to its connection to human rights law, and discuss the literature around compromise and consensus. Finally I examine arguments for intersubjective collaboration that may suggest it offers us greater ethical insight, and consider both how the process of decision making needs to change to accommodate these arguments, and indeed, if they are sufficient to suggest the child’s best interests are benefited rather than endangered by this process.
Original languageEnglish
Publication statusPublished - 20 Jul 2013
EventEuropean Association of Centres of Medical Ethics - Ruhr University, Bochum, Germany
Duration: 19 Jul 201321 Jul 2013


ConferenceEuropean Association of Centres of Medical Ethics

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