The Effects of Introducing a Harm Threshold for Medical Treatment Decisions for Children in the Courts of England & Wales: An (Inter)National Case Law Analysis.

The case of Charlie Gard sparked an ongoing public and academic debate whether in court decisions about medical treatment for children in England & Wales the best interests test should be replaced by a harm threshold. However, the literature has scantly considered (1) what the impact of such a replacement would be on future litigation and (2) how a harm threshold should be introduced: for triage or as standard for decision-making. This article directly addresses these gaps, by first analysing reported cases in England & Wales about medical treatment in the context of a S31 order, thus using a harm threshold for triage and second comparing court decisions about medical treatment for children in England & Wales based on the best interest test with Dutch and German case law using a harm threshold. The investigation found that whilst no substantial increase of parental discretion can be expected an introduction of a harm threshold for triage would change litigation. In particular, cases in which harm is limited, currently only heard when there are concerns about parental decision-making, may be denied a court hearing as might cases in which the child has lost their capacity to suffer. Applying a harm threshold for triage in decisions about withholding or withdrawing life-sustaining treatment might lead to a continuation of medical treatment that could be considered futile.

Mediating disputes under the Mental Capacity Act 2005: relationships, participation, and best interests.

This article analyses the use of mediation to resolve mental capacity law disputes, including those that arise in the healthcare context. It draws on original empirical data, including interviews with lawyers and mediators, and analysis of a mediation scheme, to argue that mediation has the potential to be an effective method of resolution in mental capacity law. It highlights the relationship benefits of mediation while acknowledging the challenges of securing P's participation and best interests. The final section of the article considers how mediation can operate in one of the most challenging healthcare environments, the Intensive Care Unit. The article emphasizes that the challenges we see in mediation are not unique and exist across the spectrum of Court of Protection practice. Therefore, the article concludes that mediation may be used effectively but the jurisdiction would also benefit from a clearer regulatory framework in which it can operate.

The two lives of the Mental Capacity Act: rethinking East-west binaries in comparative analysis.

The Mental Capacity Act 2005 in England and Wales and Singapore's Mental Capacity Act 2008 (which substantially transplants provisions from the former statute) might appear to be twins on paper, but they have gone on to lead very different lives. In this article, we examine how two broadly identical laws have taken on divergent identities within their respective jurisdictions when implemented and interpreted in the courtroom. We reveal and analyse differences in parliamentary intent concerning at what stage a person's decision-making agency is putatively empowered; judicial development of central concepts; underlying socio-cultural commitments; and outline opportunities for bi-directional learning in mental capacity law across both jurisdictions.

How should we decide how to treat the child: harm versus best interests in cases of disagreement.

Where parents seek treatment for their young child that healthcare professionals cannot agree to, the High Court can determine what is in the child's best interests. Some activists and academics seek change to impose threshold criteria that would bolster the decision-making rights of parents and reduce deference to clinicians and the courts. We defend the best interests standard against arguments that a higher threshold of 'significant harm' should apply. We do so from ethical, legal, and clinical perspectives. The matter is of significant moral and practical importance, especially in light of the divergence of academic opinion, the burgeoning number of cases coming before the courts and recent case law and statutory attempts to effect change. We begin by disputing ethical claims that a significant harm threshold is preferable to the best interests standard, and then we set out jurisprudential and practical arguments that demonstrate the imprudence of a significant harm threshold and defend the established yardstick of best interests.

The Voluntary Sterilisation Act: Best Interests, Caregivers, and Disability Rights.

How can caregivers' interests be balanced with disability rights in decisions about whether to sterilise an intellectually disabled person? This question is considered in the context of Singapore, a commonwealth country that lacks a test case. Singapore has a lesser-known history of eugenics, and has struck an uneasy compromise between communitarian values and obligations under the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in recent years. This article provides an overview of Singaporean law under the Voluntary Sterilisation Act 1974 and the Mental Capacity Act 2008, and compares this with the law in Canada, England and Wales, and Australia. This article also situates the CRPD in the context of Singapore's dualist view of international law and communitarian approach to disability policy. It argues that CRPD rights to bodily integrity can be presumptively upheld in best interests determinations on sterilisation, while caregivers' interests can be accommodated in a relational understanding of best interests. A decisional framework along these lines is proposed.

What does the best interests principle of the convention on the rights of the child mean for paediatric healthcare?

The present review analyses the implications of the best interests of the child principle, which is one of the most widely discussed principles of medical ethics and human rights, for paediatric healthcare. As a starting point, it presents the interpretation of the best interests principle by the United Nations Committee on the Rights of the Child. On this basis, it points out possible fields of application of the best interests principle with regard to paediatric healthcare and discusses the potential difficulties in the application of the best interests principle. Based on this, it illustrates the implications of the best interests principle for paediatric healthcare through four case studies, which look at ethical dilemmas in paediatric gynaecology, end-of-life care, HIV care and genetic testing.   Conclusion: The best interests principle requires action, inter alia, by health policymakers, professional associations, hospital managers and medical teams to ensure children receive the best possible healthcare. Whilst the best interests principle does not provide a conclusive solution to all ethical dilemmas in paediatric healthcare (as illustrated by the case studies), it provides children, medical teams, parents and families, and clinical ethicists with an indispensable framework for health care centred on the rights of the child. What is Known: • The best interests principle is one of the most widely discussed principles of medical ethics and human rights and one of the four general principles of the Convention on the Rights of the Child. What is New: • The present review discusses possible fields of application and potential difficulties of the best interests principle with regard to paediatric healthcare. • Based on this, it illustrates the implications of the best interests principle for paediatric healthcare through four case studies, which look at ethical dilemmas in paediatric gynaecology, end-of-life care, HIV care and genetic testing.

An exploration of person-centred approach in end-of-life care policies in England and Japan.

BACKGROUND: Increasing evidence has suggested that a person-centred approach (PCA) is beneficial not only for improving care outcomes but also for mitigating the pressure on public health systems. However, policy implementation gaps have prevented the translation of this complex framework into useful practical, ethical and moral stances for end-of-life care (EOLC). This article aims to explore the meaning and implications of person-centredness in EOLC policy discourses. METHODS: By perceiving policy documents as a medium embodied with socio-political and cultural norms, we analysed how PCA in EOLC is constructed within specific socio-cultural contexts and the implications of these contexts on resultant care. Focusing on England and Japan, we conducted a critical policy analysis to examine and compare key policy and legal documents released between 2000 and 2019 in these two post-industrial and socio-culturally distinctive countries. RESULTS: Our analysis found that the PCA is mobilised in policy discourses primarily through three interconnected dimensions: individual, relational and existential. While acknowledging that both countries have developed varied policy and legal mechanisms to emphasise holistic and integrated care with respect to these three dimensions, we also identified significant gaps in the pol icies both within and between England and Japan. They include ambiguity in defining patients' best interests, fragmented support for social and family care and the neglect of existential needs. CONCLUSIONS: This cross-cultural analysis has revealed the complex nature of discourses around PCA in English and Japanese EOLC policies, which often concentrate on the multifaceted aspects of experiences as one approaches the end of life. Despite this, we argue that a more holistic construction of PCA is needed in EOLC policies not only in England and Japan but also more broadly, to encapsulate the richness of end-of-life experiences.

Best interests and low thresholds: legal and ethical issues relating to needle and syringe services for under 18s in Sweden.

Access for legal minors to needle and syringe programmes raises a number of practical, legal and ethical challenges that traverse clinical practice, child protection and child rights. This article addresses the current legal age restriction on access to needle and syringe programmes (NSPs) in Sweden. Based on legislation and legislative preparatory works, it traces the rationale for retaining an age restriction in the context of a policy priority to improve access for people who inject drugs. Building on threshold theory and child rights literature, the article unpacks the apparent tension between protecting the low threshold nature of service provision, child protection duties of healthcare staff, and the best interests of the child. It explores whether this tension could be alleviated through replacing a legal age restriction for all with best interests assessments for each individual, and discusses the potential ethical and practical challenges involved in such a change.

Children's voices on their participation and best interests during a hospital stay in Australia.

PURPOSE: To explore school-aged children's experiences about their best interests and participation in care during a hospital admission. DESIGN AND METHODS: A descriptive qualitative design involving in-depth, iterative inductive review of child responses to generate key words that led to identification of categories and themes. The study was guided by the United Nations Convention on the Rights of the Child's definition of the best interests of the child, Bronfenbrenner's bioecological model and a child centred care approach. RESULTS: Nine school-aged children (5-15 years old) from one children's ward in Australia participated. Analysis yielded thirteen categories, six sub-themes, and three themes: 1) Relationships with parents were positive when they met their children's physical and emotional needs and advocated for them; 2) Relationships with staff were positive when staff created opportunities for children to have a say in their healthcare, and checked in on the children and 3) Seeking familiarity away from home was facilitated when the environment children found themselves in provided them their own space and various forms of entertainment. CONCLUSION: School-aged children were able to verbalize what their best interests were and how participation in care could be facilitated in the hospital setting. The inter-relationships of the children with their parents, healthcare professionals, and the immediate environment reflected interactions both within, and between systems. RESEARCH AND PRACTICE IMPLICATIONS: Children in hospital need to be provided with age-appropriate opportunities to participate in shared decision making to support their best interests. Studies that model and evaluate such opportunities are needed.

Attachment goes to court: child protection and custody issues.

Attachment theory and research are drawn upon in many applied settings, including family courts, but misunderstandings are widespread and sometimes result in misapplications. The aim of this consensus statement is, therefore, to enhance understanding, counter misinformation, and steer family-court utilisation of attachment theory in a supportive, evidence-based direction, especially with regard to child protection and child custody decision-making. The article is divided into two parts. In the first, we address problems related to the use of attachment theory and research in family courts, and discuss reasons for these problems. To this end, we examine family court applications of attachment theory in the current context of the best-interest-of-the-child standard, discuss misunderstandings regarding attachment theory, and identify factors that have hindered accurate implementation. In the second part, we provide recommendations for the application of attachment theory and research. To this end, we set out three attachment principles: the child's need for familiar, non-abusive caregivers; the value of continuity of good-enough care; and the benefits of networks of attachment relationships. We also discuss the suitability of assessments of attachment quality and caregiving behaviour to inform family court decision-making. We conclude that assessments of caregiver behaviour should take center stage. Although there is dissensus among us regarding the use of assessments of attachment quality to inform child custody and child-protection decisions, such assessments are currently most suitable for targeting and directing supportive interventions. Finally, we provide directions to guide future interdisciplinary research collaboration.

Public health nurses' encounters with undocumented migrant mothers and children.

OBJECTIVES: Undocumented migrant children (UMC) are often affected by policies and practices that do not take their best interests into account. The aim of this study was to describe how public health nurses (PHNs) experienced challenges and dilemmas in ensuring the best interests of the undocumented migrant child. DESIGN: This study had a qualitative descriptive design. SAMPLE: Focus group interviews and semi-structured interviews were conducted with seven PHNs in four different child health centers (CHCs). RESULTS: Qualitative content analysis was applied. Three main themes were identified: building trust, ensuring the best interests of the child, and dilemmas and challenges in ensuring the best interests of the child. The study revealed examples of immigration policy being prioritized over the best interests of the child. PHNs experienced frustration when the best interests of the child were not taken into account. Strategies for managing these conflicting demands were identified. CONCLUSION: Conflicting demands appeared when national immigration policies collided with fundamental human rights and ethical standards. Rules that exclude certain groups are incompatible with PHNs professional ethics.

Consent Rights of Gender Diverse Children in Australia and the United Kingdom: Will the Court's Involvement End?

Gender diversity allows individuals to express their innate sense of self and has been increasingly recognised over time. Consequently, paediatric gender services have seen exponential increases in referrals internationally. This has resulted in novel issues for courts, such as a child's "best interests" when accessing puberty-suppressing and gender-affirming medical care. Most recently, in the United Kingdom, the adequacy of information provided to transgender children and their families was also debated. Progression of the common law in Australia has resulted in transgender children consenting to medical treatment once Gillick competent. Yet, Bell v Tavistock [2020] EWHC 3274 temporarily halted the care of the United Kingdom's transgender children, who were previously afforded consenting rights. On appeal it was determined to be inappropriate for the divisional court to have provided generalised guidance on children's capacity to consent to medical therapy. Through comparative analysis of case law, the adequacy of these regulations will be assessed.

A sufficiency threshold is not a harm principle: A better alternative to best interests for overriding parental decisions.

Douglas Diekema influentially argues that interference with parental decisions is not in fact guided by the child's best interests, but rather by a more permissive standard, which he calls the harm principle. This article first seeks to clarify this alternative position and defend it against certain existing criticisms, before offering a new criticism and alternative. This 'harm principle' has been criticized for (i) lack of adequate moral grounding, and (ii) being as indeterminate as the best interest standard that it seeks to replace. I argue that these are not serious problems. I take Diekema's negative point to be right-our actual standard for intervention is not literally the best interests of the child-but I disagree with his proposed replacement. First, Diekema's proposed harm threshold should be more carefully distinguished from Mill's harm principle. Second, there is no reason to assume that the standard for permissible intervention coincides with the threshold for harm (or serious harm). Thus, I propose that the best alternative to the best interests standard is not a harm principle, but rather a sufficiency threshold between adequate (or 'good enough') and inadequate (or 'substandard') parenting.

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.

Do parents really know best? Informed consent to sex assigning and 'normalising' treatment of minors with variations of sex characteristics.

This paper aims to explore how pervasive constructions regarding a person's sex and gender identity in society and law limit the human rights of persons with variations of sex characteristics. Societal culture promulgates a binary (male/female) gender ideal which includes standards of normality for our bodies. People who do not easily fit these culturally constructed norms, such as persons with variations of sex characteristics, encounter numerous difficulties. The legal conceptualisation of 'sex' according to the binary maintains the medicalisation of variations of sex characteristics and reinforces the focus on sex 'normalising' treatment of children who are too young to provide their informed consent. The paper makes use of Belgium as an illustration. Not only is comprehensive legal research concerning variations of sex characteristics absent in Belgium, but the country has also been responsive to human rights claims regarding sexual identity in recent years. With regards to the sex assigning or 'normalising' treatment of persons with variations of sex characteristics, this paper argues that by accepting the substitution of the child's informed consent for the opinion of the legal representative in the absence of urgent medical necessity, Belgian law fails to protect the former's right to bodily integrity and best interests.

On the Child's Right to Bodily Integrity: When Is the Right Infringed?

This article considers two competing types of conceptions of the pre-autonomous child's right to bodily integrity. The first, which I call encroachment conceptions, holds that any physically serious bodily encroachment infringes on the child's right to bodily integrity. The second, which I call best-interests conceptions, holds that the child's right to bodily integrity is infringed just in case the child is subjected to a bodily encroachment that substantially deviates from what is in the child's best interests. I argue in this article that best-interests conceptions are more plausible than encroachment conceptions. They have more attractive implications regarding the permissibility of interventions in children's bodies that are beneficial for the child but are not medically necessary. They are better able to explain the moral distinction between cases in which an encroachment on a child's body is needed to benefit that child and cases in which an encroachment on one child's body is needed to benefit another. Finally, best-interests conceptions are more consonant than encroachment conceptions with our understanding of adults' right to bodily integrity.

End-of-life Decisions for Patients with Prolonged Disorders of Consciousness in England and Wales: Time for Neuroscience-informed Improvements.

This article explores how the law of England and Wales1 has responded thus far to medical and clinical advances that have enabled patients with prolonged disorders of consciousness to survive. The authors argue that, although the courts have taken account of much of the science, they are now lagging behind, with the result that some patients are being denied their legal rights under the Mental Capacity Act 2005. The article further argues that English law does not comply with the United Kingdom's commitments under the United Nations Convention on the Rights of Persons with Disabilities. Stressing the need for the law to keep in step with advances in science, the article concludes with robust recommendations for improvements, based on the latest research in neuroscience, to the way in which life-sustaining treatment decisions are made. This would mean that the wishes of patients, including those with covert awareness, can be better reflected in best interests assessments.

The Right to Biological Truth versus Stability of the Family.

This article reports on a 2019 Lithuanian case of disputed paternity. The judgment highlights the challenges of requiring deoxyribonucleic acid (DNA) testing of a family, where the infant is already part of an established family unit. The decision turned on the refusal of the putative parents to undergo imposed DNA testing. Ultimately, the Lithuanian Supreme Court (LSC) decided the matter according to the basis of the best interests of the child.

Supported Decision-Making for People Living with Dementia: An Examination of Four Australian Guardianship Laws.

Australia is obliged under the Convention on the Rights of Persons with Disabilities to provide decision-making support to people with cognitive impairment. While there has been considerable recent activity looking at how the law should respond to the challenges raised by the Convention, there has been little discussion in Australia of how these changes will impact upon the care of people with dementia (the largest class of person with cognitive impairment in Australia). This section examines current Australian legal approaches to decision-making for people with dementia in four jurisdictions (New South Wales, South Australia, Victoria and Western Australia) through an analysis of reported tribunal decisions in each of these jurisdictions. It notes the scope for informal supported decision-making and the basis for the invocation of guardianship orders, including the new Victorian supportive guardianship order, and compares the new standards raised by the Convention. The section considers legal reforms which could improve the implementation of supported decision-making for people living with dementia.

Bell v Tavistock: Why the Assent Model Is Most Appropriate for Decisions Regarding Puberty Suppression for Transgender and Gender Diverse Youth.

The decision of the High Court of England and Wales in Bell v Tavistock [2020] EWHC 3274 (Admin) raises important questions regarding best care for transgender and gender diverse (TGD) youth. In this section, I describe this case, its ruling, and its implications. The ruling is underpinned by the position that puberty suppression can only be ethically and legally permissible where the young person has not only provided their assent but has also been deemed capable to provide valid consent. I challenge this position on three grounds. First, it overlooks the key ethical question of whether puberty suppression is in the individual's best interests. Second, withholding puberty suppression until the young person can consent will likely result in harmful, irreversible consequences for them. Finally, puberty suppression is not sufficiently potentially harmful to justify the additional protection offered by requiring patient consent and court authorisation. For these reasons, I argue that an assent model should govern decisions about puberty suppression for TGD youth.