Theorising and Critiquing ‘Best Interests’: A Systematic Review

"The ‘best interests’ standard is a key part of international law and bioethics, governing the medical treatment of children and adults who lack decision-making capacity. While the concept is used in various circumstances, ‘best interests’ has a long association with medical decision-making, appearing in English language medical journals from at least the early-19th century. Despite its history, the concept of ‘best interests’ has been fiercely criticised within bioethics and law. Critics argue that ‘best interests’ is vague and lacks specificity, and because of this, is an unchallengeable repository of medical power, and an affront to patient autonomy or parental rights. These critiques have fuelled recent calls to replace or radically reform the ‘best interests’ standard from international bodies (the Committee on the Rights of Persons with Disabilities), and national campaign groups (the Charlie Gard Foundation in the United Kingdom). This paper, undertaken as part the BABEL Wellcome Trust Collaborative Award, presents a systematic review of fifty-three theoretically rich analyses of best interests from the 1970s to the present. The discussions consider best interests primarily in clinical situations, such as withdrawal of treatment, dementia, organ donation and circumcision. They reveal a range of theories that underlie best interests including objectivism, paternalism, patient rights, pragmatism and utilitarianism. We discuss what this multiplicity of theoretical bases can reveal about the coherence of current critiques as well as the fundamental structure, and prospects of survival, of the ‘best interests’ standard. "

CRITICAL-CARE DECISIONS ON NEONATES AND YOUNG CHILDREN IN ENGLAND AND WALES – LESSONS FOR SOUTH AFRICA

In this article it will be pointed out that in South Africa there are currently insufficient measures in place to protect the child patient, especially the neonate. A perusal of the case law of England and Wales reveals that in a number of cases on critical-care decisions the courts have used their opportunities to lay down criteria on issues such as the withholding or withdrawal of treatment in neonatal intensive care. These cases and the principles laid down in them may serve as precedents for South African case law. The English and Welsh courts have also provided guidelines on the interpretation of the best-interests standard in critical-care decisions. Guidelines on critical-care decisions were drafted by the Royal College of Paediatrics and Child Health, as well as the Nuffield Council on Bioethics. South Africa lacks suchcomprehensive guidelines on critical-care decisions concerning children. It is suggested that a comprehensive set of guidelines be drafted specifically for the unique South African position.

Assimilation, Removal, Discipline, and Confinement

A full understanding of the roots of child separation must begin with Native children. This Article demonstrates how modern child welfare, delinquency, and education systems are rooted in the social control of indigenous children. It examines the experiences of Native girls in federal and state systems from the late 1800s to the mid1900s to show that, despite their ostensibly benevolent and separate purposes, these institutions were indistinguishable and interchangeable. They were simply differently styled mechanisms of forced assimilation, removal, discipline, and confinement. As the repeating nature of government intervention into the lives of Native children makes clear, renaming a system does not change its effect. The historical roots of these systems must be acknowledged, and the current systems must be abolished and replaced. To answer the question of what a nonpunitive, non-assimilative system would look like, this Article looks to tribal courts and indigenous justice systems. It points to specific examples of how Native communities have reshaped ideas about caring for and disciplining children, including traditional adoption, kinship care, wellness courts, family group conferencing, and a “best interests” standard that emphasizes the link between individual and collective well-being.

Still a Mother

This book traces the trajectories of mothers who have lost or ceded custody to an ex-partner. The book argues that these noncustodial mothers' experiences should be understood within a greater web of gendered social institutions such as employment, education, health care, and legal systems that shapes the meanings of contemporary motherhood in the United States. If motherhood means “being there,” then noncustodial mothers, through their absence, are seen as nonmothers. They are anti-mothers to be reviled. At the very least, these mothers serve as cautionary tales. The book questions the existence of an objective method for determining custody of children and challenges the “best-interests standard” through a feminist, reproductive justice lens. The stories of noncustodial mothers that the book relates shed light on marriage and divorce, caregiving, gender violence, and family court. Unfortunately, much of the contemporary discussion of child-custody determination is dominated either by gender-neutral discussions or, at the opposite end of the spectrum, by the idea that fathers are severely disadvantaged in custody disputes. As a result, the idea that mothers always receive custody has taken on the status of common sense. If this was true, as the book's author affirms, there would be no book to write.

A capabilities approach to best interests assessments

It is an accepted principle of domestic and international law and policy that the welfare or best interests of the child must be the primary or paramount consideration in any decision made with regard to that child's upbringing. While this ‘best interests standard’ has become a core principle of welfare law, what might constitute a child or young person's best interests is given very little formal shape or content. This has provoked sustained criticism from practitioners, academics and the judiciary. In response, this paper argues that the capabilities approach can give best interests assessments much needed normative content, thereby addressing many of the criticisms directed towards the standard. The approach provides a theoretically nuanced framework for theorising about basic social justice and for evaluation, deliberation, and policy development across social welfare sectors. In arguing for a capabilities approach to best interests assessments, the paper sets out an agenda for change. It addresses the conceptual and methodological justifications for this change, and explores the empirical work that would be required. It identifies the steps and underlying principles necessary for a best interests process aligned with the capabilities approach, providing the necessary foundations for a radical reconceptualisation of best interests processes.

Do Parents Know Best?

While Article 5 of the UN Convention on the Rights of the Child requires states to respect parents’ responsibilities to provide ‘appropriate’ direction and guidance to their children, Article 18 also proclaims that ‘the best interests of the child will be [the parents’] basic concern’. But how can this be done if, as is widely accepted, the “best interests” standard is too indeterminate safely to allow courts to substitute their assessment of children’s interests for those of a child’s parents? This reason for privatising such decisions has been reinforced by concerns over the extent of public expenditure on court involvement in and legal aid for such issues, with the possible result of withdrawal of the law from this process. This article argues that there are inherent risks in leaving the arrangements for children of separating parents entirely in the hands of the parents, and considers various ways in which such risks might be reduced.

Patient Autonomy, Capacity, and Consent

This chapter discusses patient autonomy, capacity, and consent involving children. It first provides a general overview of children’s rights with respect to making medical decisions in both the United States and Europe. The chapter then discusses the best interests standard (which is usually applied in cases of minors) and how to consider capacity in the context of children. In the discussions of European approaches, the chapter covers relevant international and regional human rights law. The jurisdiction of England and Wales are used as examples. The chapter also provides a general overview of US state approaches and federal law. The chapter concludes by noting some new areas of medical decision-making which challenge the traditional models.