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)

Two new documents from the Committee on Bioethics of the American Academy of Pediatrics expand the terrain for parental decision making, suggesting that pediatricians may override only those parental requests that cross a harm threshold. These new documents introduce a broader set of considerations in favor of parental authority in pediatric care than previous AAP documents have embraced. While we find this to be a positive move, we argue that the 2016 AAP positions actually understate the importance of informed and (...) voluntary parental involvement in pediatric decision making. This article provides a more expansive account of the value of parental permission. In particular, we suggest that an expansive role for parental permission may reveal facts and values relevant to their child's treatment, encourage resistance to suboptimal default practices, improve adherence to treatment, nurture children's autonomy, and promote the interests of other family members. (shrink)

How shall we decide for others who cannot decide for themselves? And who—or what, in the case of artificial intelligence — should make the decision? The present issue of the journal tackles several interrelated topics, many of them having to do with surrogate decision making. For example, the feature article by Jardas et al 1 explores the potential use of artificial intelligence to predict incapacitated patients’ likely treatment preferences based on their sociodemographic characteristics, raising questions about the means by which (...) we come to decide for others. And a clinical ethics round table led by Wilkinson and Pillay2 examines the case of a premature baby on life support whose primary surrogate is herself incapacitated. Together, these examples force us to think more deeply about the meaning and significance of taken-for-granted concepts: respect for autonomy, substituted judgement, best interests. We’ll consider the baby first and then turn to AI. “Baby T” is a critically ill newborn delivered prematurely by emergency caesarean section. The mother had entered into a surrogacy arrangement with a same-sex male couple, the intended parents, who were to take over the baby’s care after birth—just as soon as a formal parental order could be obtained through the court. Until then, the birth mother, who had used her own eggs to conceive Baby T along with sperm from an unidentified donor, would have legal and ethical responsibility to decide about the baby’s care. Unfortunately, she too was in critical condition, having fallen unconscious prior to delivery due to a sudden brain haemorrhage. She remained unconscious, and thus incapacitated, during a crucial period in which time-sensitive decisions about Baby T’s care needed to be made, including whether to continue life support. Given the mother’s incapacity, who should …. (shrink)

Clinical guidelines summarise available evidence on medical treatment, and provide recommendations about the most effective and cost-effective options for patients with a given condition. However, sometimes patients do not desire the best available treatment. Should doctors in a publicly-funded healthcare system ever provide sub-optimal medical treatment? On one view, it would be wrong to do so, since this would violate the ethical principle of beneficence, and predictably lead to harm for patients. It would also, potentially, be a misuse of finite (...) health resources. In this paper, we argue in favour of permitting sub-optimal choices on the basis of value pluralism, uncertainty, patient autonomy and responsibility. There are diverse views about how to evaluate treatment options, and patients’ right to self-determination and taking responsibility for their own lives should be respected. We introduce the concept of cost-equivalence, as a way of defining the boundaries of permissible pluralism in publicly-funded healthcare systems. As well as providing the most effective, available treatment for a given condition, publicly-funded healthcare systems should provide reasonable suboptimal medical treatments that are equivalent in cost to the optimal treatment. We identify four forms of cost-equivalence, and assess the implications of CE for decision-making. We evaluate and reject counterarguments to CE. Finally, we assess the relevance of CE for other treatment decisions including requests for potentially superior treatment. (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)

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)

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)

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. (shrink)

Application of either the harm principle or the best interest standard to medical decision making conflicts with some types of pediatric research that pose elevated risk without the reasonable prob...

The justification for restrictive state intervention (RSI) such as criminal punishment or state reversal of parental decisions is called a limiting, or intervention (Buchanan and Brock 1989, 10), p...

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)

The current legal status and medical ethics of routine or religious penile circumcision of minors is a matter of ongoing controversy in many countries. We focus on the United Kingdom as an illustrative example, giving a detailed analysis of the most recent British Medical Association guidance from 2019. We argue that the guidance paints a confused and conflicting portrait of the law and ethics of the procedure in the UK context, reflecting deeper, unresolved moral and legal tensions surrounding child genital (...) cutting practices more generally. Of particular note is a lack of clarity around how to apply the “best interests” standard—ordinarily associated with time-sensitive proxy decision making regarding therapeutic options for a medically unwell patient—to a parental request for a medically unnecessary surgery to be carried out on the genitalia of a healthy child. Challenges arise in measuring and assigning weights to intended sociocultural or religious/spiritual benefits, and even to health-related prophylactic benefits, and in balancing these against potential physical, functional, and psychosexual risks or harms. Also of concern are apparently inconsistent safeguarding standards being applied to children based on their birth sex categorization or gender of rearing. We identify and discuss recent trends in British and international medical ethics and law, finding gradual movement toward a more unified standard for evaluating the permissibility of surgically modifying healthy children's genitals before they can meaningfully participate in the decision. (shrink)

In intensive care, disputes sometimes arise when patients or surrogates strongly desire treatment, yet health professionals regard it as potentially inappropriate. While professional guidelines confirm that physicians are not always obliged to provide requested treatment, determining when treatment would be inappropriate is extremely challenging. One potential reason for refusing to provide a desired and potentially beneficial treatment is because (within the setting of limited resources) this would harm other patients. Elsewhere in public health systems, cost effectiveness analysis is sometimes used (...) to decide between different priorities for funding. In this paper, we explore whether cost-effectiveness could be used to determine the appropriateness of providing intensive care. We explore a set of treatment thresholds: the probability threshold (a minimum probability of survival for providing treatment), the cost threshold (a maximum cost of treatment), the duration threshold (the maximum duration of intensive care), and the quality threshold (a minimum quality of life). One common objection to cost-effectiveness analysis is that it might lead to rationing of life-saving treatment. The analysis in this paper might be used to inform debate about the implications of applying cost-effectiveness thresholds to clinical decisions around potentially inappropriate treatment. (shrink)