Harm is all you need? Best interests and disputes about parental decision-making

A growing number of bioethics papers endorse the harm threshold when judging whether to override parental decisions. Among other claims, these papers argue that the harm threshold is easily understood by lay and professional audiences and correctly conforms to societal expectations of parents in regard to their children. English law contains a harm threshold which mediates the use of the best interests test in cases where a child may be removed from her parents. Using Diekema's seminal paper as an example, this paper explores the proposed workings of the harm threshold. I use examples from the practical use of the harm threshold in English law to argue that the harm threshold is an inadequate answer to the indeterminacy of the best interests test. I detail two criticisms: First, the harm standard has evaluative overtones and judges are loath to employ it where parental behaviour is misguided but they wish to treat parents sympathetically. Thus, by focusing only on ‘substandard’ parenting, harm is problematic where the parental attempts to benefit their child are misguided or wrong, such as in disputes about withdrawal of medical treatment. Second, when harm is used in genuine dilemmas, court judgments offer different answers to similar cases. This level of indeterminacy suggests that, in practice, the operation of the harm threshold would be indistinguishable from best interests. Since indeterminacy appears to be the greatest problem in elucidating what is best, bioethicists should concentrate on discovering the values that inform best interests

The harm threshold:A view from the clinic

Calls for a harm threshold to mediate the best interests test have gained momentum following the case of Charlie Gard. This chapter considers normative and empirical claims made by proponents of the harm threshold. While I accept that the best interests test may need of reform, I deny that the harm threshold is the answer. The chapter is divided into two parts. Part one investigates the empirical basis of the claim about parental decision-making in medical practice. It uses an analysis of interviews that reveal some thresholds of decision-making that are volunteered by parents and healthcare professionals in discussions about non-treatment decisions in paediatric intensive care. To some extent I recognise that this data can be used to support the empirical claims made on behalf of the harm threshold. In the second part of the chapter, I take issue with the normative conclusion that this clinical picture means we ought to support the introduction of a harm threshold into medical law. I argue that a harm threshold is largely unmotivated because the current system of decision-making patently does consider the rights of parents as well as children. Proponents of the harm threshold may nevertheless be motivated simply by the desire to make medical law consistent with public law. I argue that there are differences in the level of certainty in clinical and social outcomes, that imply we need significantly more caution when making social welfare decisions. I also note that unintended consequences from the adoption of the harm threshold that may impinge on the rights of parents and increase conflict in the healthcare arena. Finally I argue that the very characterisation of arguments for parental rights as being about liberty is incorrect.<br/

The theorisation of ‘best interests’ in bioethical accounts of decision-making

BACKGROUND: Best interests is a ubiquitous principle in medical policy and practice, informing the treatment of both children and adults. Yet theory underlying the concept of best interests is unclear and rarely articulated. This paper examines bioethical literature for theoretical accounts of best interests to gain a better sense of the meanings and underlying philosophy that structure understandings. METHODS: A scoping review of was undertaken. Following a literature search, 57 sources were selected and analysed using the thematic method. RESULTS: Three themes emerged. The first placed best interests within the structure of wider theory, noting relationships with consequentialism, deontology, prudential value theory, rights and political philosophy. The second mapped a typology of processes of decision-making, among which best interests was ambiguously positioned. It further indicated factors that informed best interests decision-making, primarily preferences, dignity and quality of life. The final theme considered best interests from a relational perspective. CONCLUSIONS: Characterisation of best interests as strictly paternalist and consequentialist is questionable: while accounts often suggested a consequentialist basis for best interests, arguments appeared philosophically weak. Deontological accounts, found in law and Kantianism, and theories of political liberalism influenced accounts of best interests, with accounts often associating best interests with negative patient preferences (i.e. individual refusals). There was much more emphasis on negative interests than positive interests. Besides preference, factors like dignity and quality of life were held to inform best interests decisions, but generally were weakly defined. To the extent that preferences were unable to inform decision making, decisions were either made by proxy authority or by an intersubjective process of diffuse authority. Differing approaches reflect bifurcations in liberal philosophy between new liberalism and neo-liberalism. Although neither account of authority appears dominant, bias to negative interests suggests that bioethical debate tends to reflect the widespread ascendancy of neo-liberalism. This attitude was underscored by the way relational accounts converged on private familial authority. The visible connections to theory suggest that best interests is underpinned by socio-political trends that may set up frictions with practice. How practice negotiates these frictions remains a key question. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12910-021-00636-0