Pickering, Newton-Howes, and Young argue that a person should be considered incapable of making a specific decision if that decision is judged by onlookers to be seriously harmful to the dec...

The freedom to choose for oneself is a part of what it means to be a human being.Jackson J In England and Wales, the Mental Capacity Act 20...

In this article, we explore alternative conflict resolution strategies to assist families and clinicians in cases of intractable dissent in paediatric health care decision-making. We focus on the ethical and legal landscape using cases from the Australian jurisdiction in New South Wales, while referencing some global sentinel cases. We highlight a range of alternative means of addressing conflict, including clinical ethics support, and contrast and contextualise facilitative or interest-based mediation, concluding that legal intervention via the courts can be protracted and (...) distressing and should be a ‘last resort’. We acknowledge many might view this as the current status quo, but we go further to recommend strategies optimal for all parties to recognise early signs of conflict and prevent its harmful escalation. While more empirical research is needed, we contend that interest-based mediation may be a valuable adjunctive method of conflict resolution. If judiciously distinguished from and utilised with clinical ethical support, it can be an effective tool to address dissent and its negative sequelae in paediatric healthcare decision-making. (shrink)

The provision of intensive care enables the lives of neonates, infants and children to be sustained or extended in circumstances previously regarded as impossible. However, as well as benefits, such care may confer burdens that resultingly frame continuation of certain interventions as futile, conferring more harm than or any, benefit. Subsequently, clinicians and families in the paediatric intensive care unit are often faced with decisions to withdraw, withhold or limit intensive care in order to act in the best interests of (...) the child. An integral consideration in respect of these decisions is that futility is a concept that has to be contextualised for all those involved. Recent high-profile legal cases highlight the professional, clinical, legal and social conflicts that can arise when parents and clinicians have different interpretations of futility. In acknowledging the complexity of these conflicts for clinicians, this paper aims to support a better understanding of futility as an integral concept in such difficult and emotive decisions within professional practice. We utilise the concept of futility to frame how these decisions to withdraw or withhold certain invasive life-prolonging interventions are ethically and legally justifiable, even when they disagree or conflict with parental views. To support clinicians in understanding these decisions, we in part use the familiar bioethical framework of Principlism developed by Beauchamp and Childress. We suggest that understanding legal and ethical analysis of futility ultimately will help clinicians in approaching and reflecting on such decision-making. (shrink)

Adolescent sexuality is one of the most important reproductive health issues that confronts healthcare professionals with moral dilemmas and legal issues. In this study, we aim to justify the at-risk adolescents’ regulations on access to key reproductive health services (KRHSs) based on principles of Islamic biomedical ethics and jurisprudence. Despite the illegitimacy and prohibition of sexuality for both girls and boys in Islamic communities, in this study, using 5 principles or universal rules of purpose; certainty, no-harm; necessity; and custom, we (...) argue that first, applying these principles in the context of the no-harm principle can provide the best interests of at-risk adolescents; second, it is permissible to provide KRHSs to these adolescents with their own assent, as long as necessary, only with the intention of preventing or reducing harm. In this framework, while preventing harm, it tries to provide the best interests of at-risk adolescent. Thus, the principle of no-harm requires that the government, by designating the responsibility to healthcare professionals, protects at-risk adolescents from harm, and obliges these professionals to choose and implement the option that best suits adolescents’ interests. (shrink)

Although rapid genomic sequencing (RGS) is improving care for critically ill children with rare disease, it also raises important ethical questions that need to be explored as its use becomes more widespread. Two such questions relate to the degree of consent that should be required for RGS to proceed and whether it might ever be appropriate to override parents’ decisions not to allow RGS to be performed in their critically ill child. To explore these questions, we first examine the legal (...) frameworks on securing consent for genomic sequencing and how they apply to the specific context of RGS for critically ill children. We then use a tool from clinical ethics, the Zone of Parental Discretion, to explore two case studies and identify under which circumstances it might be appropriate for parental refusal of RGS to be overridden. We argue that RGS may be a context where, in addition to assessing the complexity of the test offered, it is ethically appropriate to consider an effect on patient outcomes when deciding the degree of consent required. We also suggest that there are some contexts where it may be ethically justified to perform RGS, even when it is actively against the wishes of the parents. More work is needed to examine exactly how ‘time-sensitive’ exceptions to current guidance on consent for genomic sequencing could be formulated and operationalised for RGS for critically ill-children. (shrink)

How should liberal-democratic governments deal with emerging vaccination hesitancy when that leads to the resurgence of diseases that for decades were under control? This article argues that vaccination policies should be justified in terms of a proper weighing of the rights of children to be protected against vaccine-preventable diseases and the rights of parents to raise their children in ways that they see fit. The argument starts from the concept of the ‘best interests of the child involved’. The concept is (...) elaborated for this context into the dual regime structure in which parents have fiduciary authority over what they consider to be best for their child, and the state has fiduciary authority over a child’s basic interests. This argument leads to conditional mandatory vaccination programs that should be informed by a correct balancing of the two legal principles of proportionality and precaution. This results in contextual childhood vaccination policies of upscaling interference: a three-tiered approach of increased intrusion, from voluntary program when possible and mandatory or even compulsory programs when necessary to protect the child’s basic interests. (shrink)

Institutional guidelines for transgender children and adolescent minors fail to adequately address a critical juncture of care of this population: how to proceed if a minor and their parents have disagreements concerning their gender-affirming medical care. Through arguments based on ethical, paediatric, adolescent and transgender health research, we illustrate ethical dilemmas that may arise in treating transgender and gender diverse youth. We discuss three potential avenues for providing gender-affirming care over parental disagreement: legal carve-outs to parental consent, the mature minor (...) doctrine and state intervention for neglect. Our discussion approaches this parent–child disagreement in a manner that prioritises the developing autonomy of transgender youth in the decision-making process surrounding medically assisted gender affirmation. We base our arguments in the literature surrounding the risks and benefits of gender-affirming therapy in transgender children and the existing legal basis for recognising minors’ decision-making authority in certain medical situations. (shrink)

According to various accounts, intervention in pediatric decisions is justified either by the best interests standard or by the harm principle. While these principles have various nuances that distinguish them from each other, they are similar in the sense that both focus primarily on the features of parental decisions that justify intervention, rather than on the competency or authority of the parties that intervene. Accounts of these principles effectively suggest that intervention in pediatric decision making is warranted for both physicians (...) and the state under precisely the same circumstances. This essay argues that there are substantial differences in the competencies and authorities of physicians and the state, and that the principles that guide their interventions should also be conceived differently. While both the best interests standard and the harm principle effectively incorporate important aspects of physicians’ ethical obligations, neither adequately reflects the state’s ethical obligations. In contrast to physicians, the state has major obligations of distributive justice and neutrality that should form an integral part of any proposed ethical principles guiding state intervention in pediatric decision making. The differences are illustrated by examining recent cases involving parental refusal of chemotherapy in aboriginal Canadian communities and parental refusal of blood transfusions by Jehovah’s Witnesses. (shrink)

Douglas Diekema has argued that it is not the best interest standard, but the harm principle that serves as the moral basis for ethicists, clinicians, and the courts to trigger state intervention to limit parental authority in the clinic. Diekema claims the harm principle is especially effective in justifying state intervention in cases of religiously motivated medical neglect in pediatrics involving Jehovah’s Witnesses and Christian Scientists. I argue that Diekema has not articulated a harm principle that is capable of justifying (...) state intervention in these cases. Where disagreements over appropriate care are tethered to metaphysical disagreements, it is moral-metaphysical standards, rather than merely moral standards, that are needed to provide substantive guidance. I provide a discussion of Diekema’s harm principle to the broader end of highlighting an inconsistency between the theory and practice of secular bioethics when overriding religiously based medical decisions. In a secular state, ethicists, clinicians, and the courts are purportedly neutral with respect to moral-metaphysical positions, especially regarding those claims considered to be religious. However, the practice of overriding religiously based parental requests requires doffing the mantle of neutrality. In the search for a meaningful standard by which to override religiously based parental requests in pediatrics, bioethicists cannot avoid some minimal metaphysical commitments. To resolve this inconsistency, bioethicists must either begin permitting religiously based requests, even at the cost of children’s lives, or admit that at least some moral-metaphysical disputes can be rationally adjudicated. (shrink)

This work clarifies the role of the best interest standard (BIS) as ethical principle in the medical care of children. It relates the BIS to the ethical framework of medical practice. The BIS is shown to be a general principle in medical ethics, providing grounding to prima facie obligations. The foundational BIS of Kopelman and Buchanan and Brock are reviewed and shown to be in agreement with the BIS here defended. Critics describe the BIS as being too demanding, narrow, opaque, (...) not taking the family into account and not suitable as limiting principle. This work responds to these criticisms, showing that they do not stand up to scrutiny. They either do not apply to the BIS, only apply to misuses of the BIS or criticise a BIS that is not seriously defended in the literature. (shrink)

For many years the prevailing paradigm for medical decision making for children has been the best interest standard. Recently, some authors have proposed that Mill’s “harm principle” should be used to mediate or to replace the best interest standard. This article critically examines the harm principle movement and identifies serious defects within the project of using Mill’s harm principle for medical decision making for children. While the harm principle proponents successfully highlight some difficulties in present-day use of the best interest (...) standard, the use of the harm principle suffers substantial normative and conceptual problems. A medical decision-making framework for children is suggested, grounded in the four principles. It draws on the best interest standard, incorporates concepts of harm, and provides two questions that can act as guide and limit in medical decision making for children. (shrink)

When shared decision making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward. This article reviews the evolution of thought about the best interest standard and then discusses the advantages of the harm principle (HP) and the zone of parental discretion (ZPD). Applying these frameworks to parental refusals in situations of complexity and uncertainty presents challenges that necessitate concrete substeps to analyze the big picture and identify key (...) questions. I outline and defend a new decision-making tool that includes three parts: identifying the nature of the disagreement, checklists for key elements of the HP and ZPD, and a “think list” of specific questions designed to enhance use of the HP and ZPD in clinical decision making. These tools together will assist those embroiled in complex disagreements to disentangle the issues to find a path to resolution. (shrink)

Informed consent processes are a vital component of both human and veterinary medicine. Current practice encourages veterinarians to learn from insights in the human medical field about how best to achieve valid consent. However, drawing on published literature in veterinary and medical ethics, this paper identifies considerable differences between the purposes of veterinary and human medical consent. Crucially, it is argued that the legal status of animal patients as ‘property’ has implications for the ethical role of veterinary informed consent and (...) the protection of the animal ‘patient’. It is suggested that veterinary informed consent should be viewed as an ethical pivot point where the multiple responsibilities of a veterinary professional converge. In practice, balancing these responsibilities creates considerable ethical challenges. As an example, the paper discusses the renewed call for UK veterinarians to make animal welfare their first priority; we predict that this imperative may increasingly cause veterinary informed consent to become an ethical pressure point due to tensions caused by the often conflicting interests of animals, owners and the veterinary profession. In conclusion, the paper argues that whilst gaining informed consent can often be presented as a robust ethical justification in human medicine, the same cannot be said in veterinary medicine. If the veterinary profession wish to prioritise animal welfare, there is an urgent need to re-evaluate the nature of authority gained through owner informed consent and to consider whether animal patients might need to be better protected outside the consent process in certain circumstances. (shrink)

This article critically examines the legal arguments presented on behalf of Charlie Gard’s parents, Connie Yates and Chris Gard, based on a threshold test of significant harm for intervention into the decisions made jointly by holders of parental responsibility. It argues that the legal basis of the argument, from the case of Ashya King, was tenuous. It sought to introduce different categories of cases concerning children’s medical treatment when, despite the inevitable factual distinctions between individual cases, the duty of the (...) judge in all cases to determine the best interests of the child is firmly established by the case law. It argues that the focus should not have been on a threshold for intervention but on whether his parents had established that the therapy they wanted was a viable alternative therapeutic option. In the April hearing, Charlie’s parents relied on the offer of treatment from a US doctor; by July they had an independent panel of international experts supporting their case although by this time the medical evidence was that it was too late for Charlie. One of Charlie’s legacies for future disputes may be that his case highlighted the need for evidence as to whether the treatment parents want for their child is a viable alternative therapeutic option before a court can determine which therapeutic option is in the best interests of the child. (shrink)

Children do not belong to their parents. They are not property, although throughout much of history they were considered chattel. In the 21st century, it is generally agreed that children are indiv...

In an earlier paper entitled _Harm is all you need?_, I used an analysis of English law to claim that the harm threshold was an unsuitable mediator of the best interests test when deciding if parental decisions should be overruled. In this paper I respond to a number of commentaries of that paper, and extend my discussion to consider the claim that the harm threshold gives appropriate normative weight to the interests of parents. While I accept that parents have some (...) rights over their children, I argue these are dependent on parents’ duties to benefit their children. While many such benefits are understood pluralistically, and are thus within parents’ ambit to decide, I claim that health benefits are ordinally different, because they play a foundational role in the flourishing of an individual. In the light of this, clinicians have the moral authority to override parental refusals, although in some cases abstaining from exercising this authority may be a pragmatic way to maintain parental engagement and ensure our ability to benefit the child in future. (shrink)