This paper presents four different understandings of the family and their concomitant views of the authority of the family in pediatric medical decision making. These different views are grounded in robustly developed, and conflicting, worldviews supported by disparate basic premises about the nature of morality. The traditional worldviews are often found within religious communities that embrace foundational metaphysical premises at odds with the commitments of the liberal account of the family dominant in the secular culture of the West. (...) class='Hi'>These disputes are substantial and ultimately irresolvable by sound rational argument because of the failure to share common foundational premises and rules of evidence. It is in light of these fundamental disagreements that there is a need to evaluate critically the claims and agenda advanced by the Convention on the Rights of the Child. (shrink)

Paediatric genomic research raises particularly challenging questions on whether and under what circumstances to return research results. In the paediatric context, decision-making is guided by the best interests of the child framework, as enshrined in the 1989 international Convention on the Rights of the Child. According to this Convention, rights and responsibilities are shared between children, parents, researchers, and the state. These "relational" obligations are further complicated in the context of genetic research.

The best-interests standard is a widely used ethical, legal, and social basis for policy and decision-making involving children and other incompetent persons. It is under attack, however, as self-defeating, individualistic, unknowable, vague, dangerous, and open to abuse. The author defends this standard by identifying its employment, first, as a threshold for intervention and judgment (as in child abuse and neglect rulings), second, as an ideal to establish policies or prima facie duties, and, third, as a standard of reasonableness. Criticisms (...) of the best-interests standard are reconsidered after clarifying these different meanings. (shrink)

While the best interest standard (BIS) enjoys wide endorsement as the ethical and decision-making standard in pediatrics, it has been criticized as vague and indeterminate. Alternate decision-making standards have been proposed to replace or augment the BIS, notably the harm principle (HP) and constrained parental autonomy (CPA) model. In this edition of The Journal of Clinical Ethics, Lainie Friedman Ross argues that CPA is a better standard than the BIS or the HP as both guide and limiter in pediatrics. In (...) response, I review the important work done by the BIS in pediatrics, and argue that neither the HP nor the CPA can take over these functions or replace the BIS. Among other things I argue: (1) The BIS provides more robust protections for the moral claims of children. (2) The CPA model and the HP do not resolve the indeterminacy and vagueness present in complex medical situations, and the BIS is better suited to deal with this vagueness and indeterminacy. (3) The BIS is a general principle of medical ethics with special application in pediatrics; it fits seamlessly into the system of medical ethics and fulfills many functions within pediatrics. The HP and the CPA model do not fit so readily within medical ethics, and are not equipped to take over the functions of the BIS. (shrink)

On what basis should we judge whether a parent’s medical decision for their child is morally acceptable? In a recent article, Johan Bester attempts to answer this question by defending a version of the Best Interest Standard for parental decision making. The purpose of this paper is to identify a number of problems faced by Bester’s version of BIS and to suggest ways to redress these problems. Accordingly, we intend to advance the project of formulating a method for guiding (...) parents’ medical decision making for their children. We argue that Bester’s standard fails to accommodate the autonomy of the child and that his criteria for assessing the reasonableness of the parents’ argument for their decision is too weak. We conclude that properly addressing these worries renders his test otiose and that it ought to be replaced with the three commonly held principles of bioethics—the principles of autonomy, beneficence, non-maleficence—and a standard of reasonableness. (shrink)

The best interest standard is the threshold most frequently employed by physicians and ethics consultants in challenging a parent’s refusal to provide consent for a child’s medical care. In this article, I will argue that the best interest standard has evolved to serve two different functions, and that these functions differ sufficiently that they require separate standards. While the best interest standard is appropriate for choosing among alternative treatment options for children, making recommendations to parents, and making (...) class='Hi'>decisions on behalf of a child when the legal decision makers are either unable to make a decision or are in dispute, a different standard is required for deciding when to seek state interference with parental decision-making authority. I will suggest that the harm principle provides a more appropriate threshold for determining when to seek state intervention than the best interest standard. (shrink)

The notion of the best interest of children figures prominently in family and reproductive policy discussions and there is a considerable body of empirical research attempting to connect the interests of children to how families and society interact. Most of this research regards the effects of societal responses to perceived problems in families, thus underlying policy on interventions such as adoption, foster care and temporary assumption of custodianship, but also support structures that help families cope with various challenges. (...) However, reference to the best interest of children can also be applied to a more basic issue in family policy, namely that of what is to be considered a family in the first place. This issue does not raise any questions regarding the proper conditions for when society should intervene in or change the family context of a child. Rather, it is about what social configurations should be recognized as a potentially fitting context for children to enter into and (if all goes well) eventually develop into adulthood within /.../ such that society’s default institutional arrangements allow it to have (by sexual and artificial reproduction, adoption, and combinations of these), care for and/or guard children. [This] will frame any further discussion of /.../ policies having further implications for, for example, the practices of adoption and reproductive technology, as well as regulation of custody in the event of separation or parental disagreement. (shrink)

This paper examines a variety of social scientific studies purporting to demonstrate that transracial adoption is in the best interests of children. Finding flaws in these studies and the ethical and political arguments based upon such scientific findings, we argue for adoption practices and policies that respect the racial and ethnic identities of children of color and their communities of origin.

Savulescu and colleagues have provided interesting insights into how the UK public view the ‘best interests’ of children like Charlie Gard. But is best interests the right standard for evaluating these types of cases? In the USA, both clinical decisions and legal judgments tend to follow the ‘harm principle’, which holds that parental choices for their children should prevail unless their decisions subject the child to avoidable harm. The case of Charlie Gard, and others like (...) it, show how the USA and the UK have strikingly different approaches for making decisions about the treatment of severely disabled children. (shrink)

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With (...) reference to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances. (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)

In the context of critically ill children, Baines contended that the best interests test was neither objective nor coherent, and thus of little applicability in making end-of-life decisions. In reply, Bridgeman attempted to refute these claims through legal analysis and contended that the doctrine allowed for responsive, fact-specific, context-sensitive and prudential reasoning. This paper is a response to Bridgeman, and argues that an examination of case law reveals the subjective and value-laden nature of the test. Courts must (...) make decisions in contested cases, but there is no reason to hold that a judge can divine the best interests of a critically ill child better than either parents or medical staff. This paper analyses a number of cases where judicial decisions appear at odds with the child's best interests, and argues that as the outcome depends upon the value system of the decision-maker the test is unhelpful in contested end-of-life cases. (shrink)

One of the most contentious ethical issues in the neonatal intensive care unit is the withdrawal of life-sustaining treatment from infants who may otherwise survive. In practice, one of the most important factors influencing this decision is the prediction that the infant will be severely intellectually disabled. Most professional guidelines suggest that decisions should be made on the basis of the best interests of the infant. It is, however, not clear how intellectual disability affects those interests. Why should intellectual (...) disability be more important than physical disability to the future interests of an infant? Is it discriminatory to base decisions on this? This paper will try to unravel the above questions. It seems that if intellectual disability does affect the best interests of the child it must do so in one of three ways. These possibilities will be discussed as well as the major challenges to the notion that intellectual disability should have a role in such decisions. The best interests of the child can be affected by severe or profound intellectual disability. It is, though, not as clear-cut as some might expect. (shrink)

Law’s processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts’ decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts’ apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, (...) this article explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services – and into generalist ethics support services – in order to gauge whether this is indeed a promising development. (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)

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and (...) legal space within which to make decisions that will facilitate their child's long‐term autonomy, not only her present‐day autonomy. Moreover, third‐party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making. (shrink)

Wayne Martin and colleagues argue that decisions about patients’ best interests must sometimes take into account the interests of others Doctors often find themselves in circumstances where they must make decisions on behalf of an incapacitated patient. As a matter of both ethics and law, such decisions must be taken in the best interests of the patient, but uncertainty remains about what is meant by best interests, especially in relation to the interests of others. Should the interests (...) of others enter into a determination of the patient’s best interests? We believe that they should and argue against a recent trend to focus solely on the patient. It only takes a moment’s reflection to appreciate that the interests of one person are often wrapped up with the interests of others. A patient has an interest in recovering from her illness, but so do her family, employer, care providers, etc. Sometimes these various interests can be independently specified, but in other cases they are inextricably intertwined. Suppose that I am a single parent whose overriding interest is to ensure the wellbeing of my children. In that case the proper specification of my best interest is a function of theirs; I simply cannot determine the one without considering the other. This can create an ethical problem in medical decision making. In circumstances where medical staff must make a decision in the best interests of an incapacitated patient, to what extent can or should they take account of the interests of other people whose lives are affected by the outcome? These ethical issues have taken on a concrete legal shape in the UK with the implementation of the Mental Capacity Act 2005, which specifies that, “An act done, or decision made, under this Act for or on behalf of a person who lacks capacity …. (shrink)

In this issue of JCE, Douglas Diekema argues that the best interest standard (BIS) has been misemployed to serve two materially different functions. On the one hand, clinicians and parents use the BIS to recommend and to make treatment decisions on behalf of children. On the other hand, clinicians and state authorities use the BIS to determine when the government should interfere with parental decision-making authority. Diekema concedes that the BIS is appropriately used to “guide” parents in making (...) medical treatment decisions for their children. But he argues that the BIS is inappropriately used as a “limiting” standard to determine when to override those decisions. Specifically, Diekema contends that the BIS “does not represent the best means for determining when one must turn to the state to limit parental action.” He argues that this limiting function should be served by the harm principle instead of by the BIS.I contend that we should not reassign the BIS’s limiting function to the harm principle. In this article I make two arguments to support my position. First, the BIS has effectively served, and can serve, both guiding and limiting functions. Second, the harm principle would be an inadequate substitute. It cannot serve the limiting function as well as the more robust BIS. (shrink)

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether (...) the guidelines conflict or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

Approximately one in 10 children in foster care are medically complex and require intensive medical supervision, frequent hospitalization, and difficult medical decision making. Some of these children are in foster care because their parents cannot care for their medical needs; other parents are responsible for their child’s medical needs due to abuse or neglect. In either case, there can be uncertainty about the role that a child’s biological parents should play in making serious medical decisions. Here (...) we highlight some of the ethical challenges inherent in making these decisions for children in foster care, as seen through the lenses of a child welfare provider, an inpatient care physician, and a primary care pediatrician. (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)

The debate on “cognitive enhancement” has moved from discussions about enhancement in adults to enhancement in children and adolescents. Similar to positions expressed in the adult context, some have argued that pediatric cognitive enhancement is acceptable and even laudable. However, the implications differ between the adult and the pediatric contexts. For example, in the debate over cognitive enhancement in adults, i.e., those who have legal majority, respect for autonomy demands that personal preferences not be overridden in absence of strong (...) arguments because competent adults are in the best position to recognize and protect their own interests. However, the concepts of best interest and autonomy provide a different picture in the case of pediatric enhancement. In the context of decision-making involving minors, it is assumed that the parents are in the best position to promote and protect the interests of their children and this is chiefly why they are granted the authority to make decisions on their behalf. However, we argue in favor of guarding the physical integrity of children from intrusive medical interventions without medical need and with clear and detrimental effects. We also support leaving open other legitimate life trajectory and career choices, as this is in the best interest of the child, even if they are less in line with the expectations of parents or success in educational settings. In addition, parental decision-making in favor of cognitive enhancement suffers from a lack of information about cognitive enhancers and potential biases. Thus, bearing in mind these issues and the development of volitional capacities of children, we argue that pediatric enhancement is not a morally acceptable practice and “inevitability” can be curbed with clear and fair rules that establish duties of state representatives, physicians, and public institutions. We conclude by canvassing evidence-based policy options that could protect the open future of minors and define the parameters of parental decision-making analogous to the cases of nicotine and alcohol. (shrink)

Proponents of children's liberation (CL) argue that there are no morally relevant differences between children and adults. Consequently, special protective laws that limit children's freedom are unjustified, and should be abolished. Protectionists reject the premise of this argument, and hence also the conclusion. Proponents of CL mostly fix upon the capacity for instrumental reasoning as the criterion that should separate autonomous from non-autonomous individuals. I argue that most children are substantially worse at instrumental reasoning than most (...) adults, and although drawing a line between the two categories has an arbitrary element, outstanding exceptions on both sides can be justly accommodated. Furthermore, the capacity for instrumental reasoning is a necessary but not sufficient basis for equal rights. A morally decent society is more demanding of individuals than the skeptical or libertarian one that most plausibly grounds CL. To construct and live in such a society requires both prudence and morality. But there is evidence that children need protection and limits to develop these traits. So there are morally relevant differences between children and adults after all, and the argument from justice fails. The utilitarian arm of the argument also fails: because of these morally relevant differences, CL would have worse consequences than those envisioned by its supporters. Parents would lose important authority, and there would be more homeless children. Consequently, the gap between advantaged and disadvantaged persons would become larger and more irreversible. (shrink)

ABSTRACTThere are many different ethical arguments that might be advanced for and against childhood vaccinations. In this paper I explore one particular argument that focuses on the idea that such vaccinations are justifiable because they are held to be in the best interests of a particular child. Two issues arise from this idea. The first issue is how best interests are to be determined in this case. The second issue is what follows from this to justify potential interventions within the (...) family in relation to such vaccinations. I argue that best interests must be characterised objectively in such situations and that this means that, in at least some cases, parental decision‐making about vaccinating their children may be overridden. (shrink)

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. (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)

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 Diekema9s 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. (shrink)

BackgroundThe complexity of decision-making in the paediatric context is well recognised. In the majority of cases, parents and healthcare professionals work together to decide which treatments the paediatric patient should receive. On occasions, however, parental wishes conflict with what clinicians think is best for the paediatric patient. Where persistent disagreement between clinicians and parents exists, clinicians must ascertain if they have a moral, professional, and legal obligation to overrule the parents' decision and implement their preferred option.PurposeFew decision-making frameworks to assist (...) in addressing the ethical issues that arise in clinical decision-making relate specifically to the paediatric context. Diekema's Harm Threshold Framework and the Zone of Parental Discretion Framework assist in determining whether parental decisions should or should not be overridden. This paper examines the similarities and differences between these frameworks.MethodsThe frameworks are analysed i... (shrink)

Recent law and ethics literature has been inundated with recommendations of the "best interests" criterion as the appropriate guide for neonatal and maternal-fetal decision-making. Increasingly, however, its adequacy is being questioned. In Chapter 1, I survey the arguments of "best interests" defenders and critics and suggest one problem is that the "best interests" criterion has yet to be subjected to a systematic conceptual and ethical analysis. In Chapter 2, therefore, I conduct such an analysis to evaluate more systematically its appropriateness (...) as a decision-making guide in neonatal and maternal-fetal medicine, concluding that the "best interests" criterion cannot assist us in seeing and addressing all that is at stake in neonatal and maternal-fetal decision-making because it excludes any consideration of the "interdependent" and other interests of family members. Therefore, I suggest that an ethical criterion or set of criteria which can explicitly consider and adequately balance the interests of infants or fetuses and family members would be a more helpful guide for neonatal and maternal-fetal decision-making. ;In Chapters 3-7, I attempt to move beyond the "best interests" criterion, drawing on fieldwork I conducted in the United States, Sweden, and India to point out some conceptual and normative gaps to be addressed in the development of a more adequate guide for neonatal and maternal-fetal decision-making. In Chapter 3, I describe this fieldwork and explain its purpose as illustrating the clinical ethical strategies employed in these countries to balance the interests of various parties in actual decision-making. In Chapters 4-6, I describe these strategies. Finally, in Chapter 7, I point out some conceptual and normative gaps in these decision-making strategies, noting that these gaps have also been unaddressed by the "best interests" critics reviewed in Chapters 1 and 2. I suggest that we must address these gaps to develop theoretical structures that will enable us to explicitly consider and adequately balance the "interdependent" and other interests of infants or fetuses, their family members, and even society in neonatal and maternal-fetal decision-making. (shrink)

The “best interest standard” is the guidance principle for pediatric healthcare in the United States (US) and the United Kingdom (UK). In the UK, the best interest standard may also be used as an intervention principle when parents make good but non-ideal decisions whereas intervention in the US requires a determination of abuse or neglect. I examine whether and how the different uses of the best interest standard influence predictive genetic testing of children.

Abstract:What is in the best interests of a child, and could that ever include interventions that we might regard as prima facie detrimental to a child’s physical well-being? This question is raised a fortiori by growth attenuation treatments in children with severe neurological disorders causing extreme developmental delay. I argue that two principles that provide guidance in generating a conception of best interests for each individual child yield the right results in such cases. The principles are as follows: thepotentiality (...) principle, whereby every child should be able to develop its potential and is entitled to receive certain help in doing so, and theprinciple of psychosomatic harmony, whereby every human being is entitled to treatment that is appropriate to or enables a life in which mind and body are in tune with each other. These principles indicate a certain response to what we can call Ashley-type cases and admit certain caveats. (shrink)

The treatment decisions of competent adults, especially treatment refusals, are generally respected. In the case of minors something turns on their age, and older minors ought increasingly to make their own decisions. On the other hand, parents decide on behalf of infants and young children. Their right to do so can best be justified in terms of the importance of preserving intimate family relationships, rather than in terms of the child's best interests, although the child's best interests (...) will most often follow from this arrangement. Nevertheless, there are and ought to be legal, ethical, and financial constraints on parental decision making. (shrink)

While the substantiation of “best interests” has received much attention, the question of how “the child” is conceptualised to ensure any action taken or decision made is in the particular child’s best interests has been largely neglected. In this paper, I argue that the lack of robust understanding of who “the child” is means that we continue to make many generalisations and category-based assumptions in determining the child’s best interests. In addressing the challenge of doing right by the individual child, (...) I propose a three-step approach based on a theoretical model of the child that avoids presumptions about child-typical needs and insists on an assessment of the child’s individual characteristics, needs, qualities, and circumstances, making it the only conceptualisation fully meeting the child centrism criterion required by children’s rights as determined by the United Nations Convention on the Rights of the Child. (shrink)

People are using innovative internet of things technologies to gain individualised management of their type 1 diabetes. The #WeAreNotWaiting movement supports them to build their own hybrid closed loop systems and access their real time blood sugar data via any web connected device. A small number of parents in Australia use such DIY looping systems to manage their child’s type 1 diabetes, but these systems have not been approved by the Therapeutic Goods Administration in Australia, creating ethical dilemmas for (...) clinicians about how to respond to the use of medical devices that are not registered on the Australian Register of Therapeutic Goods. This article considers whether the use of DIY looping is in the best interests of the child and, if not, whether intervention in parental decision making is justified to prevent harm to the child. It addresses the ongoing duty of healthcare professionals to provide care to children who are ‘looping.’ Reference is made to findings from a study, Personalised Closed Loop Systems for Childhood Diabetes, to illustrate stakeholders’ perceptions of benefits and harms of DIY looping systems. I conclude that the decision of parents to use DIY looping technology could be considered to be in a child’s best interests, broadly defined, and falls within the Zone of Parental Discretion, however healthcare practitioners who support parents may have professional concerns in doing so. (shrink)

Opt-out systems of postmortem organ procurement are often supposed to be justifiable by presumed consent, but this justification turns out to depend on a mistaken mental state conception of consent. A promising alternative justification appeals to the analogical situation that occurs when an emergency decision has to be made about medical treatment for a patient who is unable to give or withhold his consent. In such cases, the decision should be made in the best interests of the patient. The analogous (...) suggestion to be considered, then, is, if the potential donor has not registered either his willingness or his refusal to donate, the probabilities that he would or would not have preferred the removal of his organs need to be weighed. And in some actual cases the probability of the first alternative may be greater. This article considers whether the analogy to which this argument appeals is cogent, and concludes that there are important differences between the emergency and the organ removal cases, both as regards the nature of the interests involved and the nature of the right not to be treated without one’s consent. Rather, if opt-out systems are to be justified, the needs of patients with organ failure and/or the possibility of tacit consent should be considered. (shrink)

General Practitioners (GPs) and allied healthcare professionals working in primary care are regularly required to make decisions with, for and on behalf of patients who lack capacity. In England and Wales, these decisions are made for incapacitated adult patients under the Mental Capacity Act 2005, which primarily requires that decisions are made in the patient’s ‘best interests’. Regarding children, decisions are also made in their best interests but are done so under the Children (...) Act 1989, which places paramount importance on the welfare of the child. Decisions for children are usually made by parents, but a GP may become involved if he or she feels a parent is not acting in the best interests of the child. Internationally, including elsewhere in the UK, different approaches are taken. We hypothesise that, despite the legislation and professional guidelines, there are many different approaches taken by GPs and allied healthcare professionals in England and Wales when making these complex decisions with, for and on behalf of patients who lack capacity. To better understand what is known about how these decisions are made, we plan to undertake a scoping review and directed content analysis of the literature. While the majority of decisions made in primary care are made by GPs, for completeness, this review will include all allied healthcare professionals working in primary care. (shrink)

Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (ICUs) (pediatric ICU, (...) pediatric cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

Opt-out systems of postmortem organ procurement are often supposed to be justifiable by presumed consent, but this justification turns out to depend on a mistaken mental state conception of consent. A promising alternative justification appeals to the analogical situation that occurs when an emergency decision has to be made about medical treatment for a patient who is unable to give or withhold his consent. In such cases, the decision should be made in the best interests of the patient. The analogous (...) suggestion to be considered, then, is, if the potential donor has not registered either his willingness or his refusal to donate, the probabilities that he would or would not have preferred the removal of his organs need to be weighed. And in some actual cases the probability of the first alternative may be greater. This article considers whether the analogy to which this argument appeals is cogent, and concludes that there are important differences between the emergency and the organ removal cases, both as regards the nature of the interests involved and the nature of the right not to be treated without one’s consent. Rather, if opt-out systems are to be justified, the needs of patients with organ failure and/or the possibility of tacit consent should be considered. (shrink)

Unrepresented patients are individuals who lack decision makingcapacity and have no family or friends to make medical decisions for them. This population is growing in number in the United States, particularly within emergency and intensive care settings. While some bioethical discussion has taken place in response to the question of who ought to make decisions for these patients, the issue of how surrogate medical decisions ought to be made for this population remains unexplored. In this paper, (...) we argue that standard applications of surrogate decision making principles in health care are not well suited to many unrepresented patients with long-term mental health diagnosis. We argue that when applied to this population, the substituted judgment standard, designed to preserve patient preferences and values, may lead to the exclusion of their preferences. We argue further that the application of the best interest standard runs the risk of leading to harmful cases of overtreatment or undertreatment. We offer an alternative interpretation of the best interest principle that is better able to promote the well-being of unrepresented patients, especially for those who lack capacity because of mental disorders. This alternative is based on the practices and principles of harm reduction and includes three components: emphasis on considering the expressed preferences of unrepresented patients, a focus on reducing harm as well as the delivery of clinical benefits, and a recognition of the importance of promoting trust. (shrink)

ERRATUMWe regret that, due to a technical error, the uncorrected version of Angus Dawson's article was printed in 19:1. We apologise to the author and reprint in full the corrected version of the paper on the following pages. A. Dawson et al.. Bioethics 2005; 19: 72–89. ABSTRACTThere are many different ethical arguments that might be advanced for and against childhood vaccinations. In this paper I will explore one particular argument that focuses on the idea that childhood vaccinations are justifiable because (...) they are held to be in the best interests of a particular child. Two issues arise from this idea. The first issue is how best interests are to be determined in the case of childhood vaccinations. The second issue is what follows from this to justify potential interventions within the family in relation to such vaccinations. I argue that best interests must be characterised objectively in such situations and that this means that, in at least some cases, parental decision‐making about vaccinating their children may be overridden. (shrink)

In this paper I argue that liberal proponents of mandatory autonomy education tend to overlook or underestimate the potential threats that such an education poses to the overall well-being of children (including, ironically, threats to the development of genuine autonomy). They do so by paying insufficient attention to the importance of moral virtue as a constitutive element of and precondition for genuine autonomy, and by failing to recognize how the development and consolidation of moral virtue may be undermined by (...) the sort of autonomy education they recommend. I develop my argument through engagement with the work of Eamonn Callan and Ian MacMullen, drawing on Aristotelian ethics to highlight the shortcomings in their accounts. (shrink)

Two of the most poignant decisions in pediatrics concern disagreements between physicians and families over imperiled newborns. When can the family demand more life-sustaining treatment than physicians want to provide? When can it properly ask for less? The author looks at these questions from the point of view of decision theory, and first argues that insofar as the family acts in the child’s best interest, its choices cannot be constrained, and that the maximax and minimax strategies are equally (...) in the child’s best interest. He then proposes a guideline according to which the family can demand LST if it is physiologically possible to preserve a life the child can be expected to welcome, and refuse such treatment if it causes suffering that is “more than can be borne” even if an uncompromised life is expected to emerge. (shrink)

The siren call of individualism is compelling. And although we have recognized its dangerous allure in the realm of adult decision-making, it has had profound and yet unnoticed dangerous effects in pediatric decision-making as well. Liberal individualism as instantiated in the best interest standard conceptualizes the child as independent and unencumbered and the goal of child rearing as rational autonomous adulthood, a characterization that is both ontologically false and normatively dangerous. Although a notion of the individuated child might have a (...) place in establishing a threshold of care obligated and enforced by the state, beyond this context we should turn our attention more explicitly to the relational interests of children. (shrink)

Child assent is recommended in addition to parental consent when enrolling children in clinical research; however, appreciation and relevance ascribed to these concepts vary in different contexts, and information on attitudes towards storage of biological samples for future research is limited, especially in developing countries. We assessed caregivers’ understanding and appreciation of consent and assent procedures, and their attitudes towards use of stored blood samples for future research prior to enrolling a child in clinical research. A total of (...) 17 in-depth interviews were conducted with primary caregivers of children at enrolment or on the immediate follow-up date. All caregivers recalled significant amount information from the study information sheet and were able to appropriately link such information to the consent process. While all participants confirmed information received prior to blood sampling as adequate, a few noted that the purpose was not sufficiently well communicated. Caregivers felt children were cognitively vulnerable, and prone to decisions that were not necessarily in their best interest. Nearly all caregivers felt it was their right and responsibility to overrule objections from their ward’s regarding enrolment into specific study or receipt of a therapeutic procedure. There were no objections or concerns regarding use of stored biological samples for future research purposes. There is thus, a need to improve understanding of caregivers on the information provided during the informed consent process. Context-specific studies on the age of assent in specific populations are needed. (shrink)

Ross’s argument against the best interest standard (BIS) makes a clear case for the problems of the BIS, and she also notes challenges with such notions as the harm principle. In light of these critiques, Ross champions her longstanding pediatric moral norm for decision making, constrained parental autonomy (CPA). This article argues that while Ross’s critique of the traditional accounts of the BIS is correct, her solution still raises some concerns. As such, I offer the “reasonable interests standard” as (...) a way of addressing what I see as weaknesses in both the BIS and CPA. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction to the Special Issue on Pediatric Decision-MakingErica K. SalterUnlike in the traditional decisional dyad in adult-based care, pediatric decision-making typically involves a triadic relationship among the patient, their parents, and the health-care providers. This complex relationship raises questions and concerns regarding each party’s expectations, obligations, and authority. For example, should a parent be allowed to withhold a poor diagnosis from an adolescent patient? Should an HLA-matched six-year-old sister (...) be permitted to serve as a bone marrow donor for her older sibling with lysosomal storage disease? Or, should parents be given decisional authority to consent to gender-affirming care for an adolescent with gender dysphoria? Cases like these are among the most ethically challenging decisions faced by parents and health-care providers because they present competing interests and values, and it’s not always clear what is in the best interests of the child.In the context of American medicine, the best interest standard has been identified as the primary ethical and legal guide for decision-making. In its most prominent form, the best interest standard requires parents and pediatric practitioners to choose the medical treatment that maximizes benefits and minimizes harms to the particular child in question. However, over the past few decades, the standard has come under significant scrutiny, with discussions and debate in the academic bioethics literature asking whether the standard is able to serve the [End Page 181] purposes it is thought to serve and whether alternative standards might be better suited to the task(s). Despite vigorous interest in these issues, the academic literature did not seem to generate any sense of identifiable consensus about how others ought to make health-care decisions on behalf of children.Thus, in June 2022, 17 scholar-experts on pediatric decision-making standards gathered in St. Louis, MO, for a three-day symposium of discussion and consensus-building. The participating authors represented different disciplinary perspectives and different viewpoints in the debate about guidance principles that underlie pediatrics. Despite apparent disagreement about such standards in the literature, the group was able to generate a set of six consensus-based recommendations (see Table 1) for pediatric decision-making. These recommendations, as well as their application, justification, and limitations, were published as a special article in Pediatrics in August 2023 (Salter et al. 2023), which was composed with the primary goals of accessibility, teachability, and implementability for practicing pediatric clinicians. Click for larger view View full resolutionTable 1.Six consensus recommendations for pediatric decision-makingWhile the group was able to find agreement about these six central principles of pediatric decision-making, there remained several related issues that were outside of the scope of the symposium aims. For example, should these recommendations apply to neonates, children in state custody, or adolescents, and if so, how would their application be operationalized? What specific conditions should justify state intervention on parental authority? How should parents and health-care providers think about obligations to siblings in health-care decisions? This [End Page 182] special issue of Perspectives in Biology and Medicine provides a forum for our authors and collaborators to further explore these, and other, important questions.The issue opens with a piece by the symposium organizers and editors of this special issue, Erica Salter, Lainie Friedman Ross, and D. Micah Hester, describing the symposium’s inspiration and design, its execution, and the implications it might have for pediatric ethics. This contribution compares the six symposium recommendations with existing statements about pediatric decision-making, in particular the statements developed by the American Academy of Pediatrics (AAP). In “How We Found Consensus on Pediatric Decision-Making and Why It Matters,” readers will find a detailed account of the process engaged to develop the six consensus-based recommendations, as well as a discussion of the value and limitations of such a process, which may serve as a model of consensus-building useful for other unsettled topics of interest in the bioethics community.The issue’s second article, “Childhood Interests: What They Are, and Why It Matters,” by Johan Bester and Jeffrey Blustein, dives into the conceptual foundation of the symposium’s first two recommendations. This... (shrink)

In W v M and Others (Re M) the Court of Protection considered whether withdrawal of artificial nutrition and hydration was in the best interests of a person in minimally conscious state. The Mental Capacity Act 2005 states that in determining best interests the decision-maker must consider, so far as is reasonably ascertainable, the patient's wishes, feelings, beliefs and values. Baker J. indicated that a high level of specificity is required in order to attribute significant weight to these factors. (...) It is preservation of life which carries substantial weight in the best interests' balance sheet. Could the (prior) values of a patient ever meet the probative standard necessary to offset the weight accorded to preservation of life? Rather than referencing the patient's values to specific circumstances and treatments they could be more effectively considered as part of the patient narrative, how the patient would want her life story to continue/cease. (shrink)

Based on the experiences of one of the authors teaching philosophy for children in Iran, the paper asks whether respecting children's rationality, in the form of cultivating their ability and disposition to think critically, is in their best interest in an authoritarian context such as Iran. It argues that, in authoritarian contexts, respect for children's capacity for rational thought must be balanced with responsibility for their safety in their community. In other words, children's ‘best interest’ must (...) consider children both as individuals and as members of communities. The paper proposes that P4C should be used not only to teach analytic critical thinking and foster a ‘critical spirit,’ but also to help students develop the practical wisdom to judge where, when, and how best to use these skills and dispositions. (shrink)

ERRATUMWe regret that, due to a technical error, the uncorrected version of Angus Dawson's article was printed in 19:1. We apologise to the author and reprint in full the corrected version of the paper on the following pages. A. Dawson et al.. Bioethics 2005; 19: 72–89. ABSTRACTThere are many different ethical arguments that might be advanced for and against childhood vaccinations. In this paper I will explore one particular argument that focuses on the idea that childhood vaccinations are justifiable because (...) they are held to be in the best interests of a particular child. Two issues arise from this idea. The first issue is how best interests are to be determined in the case of childhood vaccinations. The second issue is what follows from this to justify potential interventions within the family in relation to such vaccinations. I argue that best interests must be characterised objectively in such situations and that this means that, in at least some cases, parental decision‐making about vaccinating their children may be overridden. (shrink)

Healthcare decision making for children has adopted the best interest of the child standard, a principle originally employed by judges to adjudicate child placement in the case of parental death, divorce, or incompetence. Philosophers and medical ethicists have argued whether the best interest principle is a guidance principle (informing parents on how they should make healthcare decisions for their child), an intervention principle (deciding the limits of parental autonomy in healthcare decision making), or both. Those who defend it (...) as only a guidance principle often cite the harm principle as the appropriate intervention principle. In this article, I challenge current use of the best interest principle in pediatric decision making as a guidance principle and as an intervention principle. I propose a model that I call constrained parental autonomy, which focuses on promoting and protecting the child’s primary goods or basic needs. I show that constrained parental autonomy can serve as both a guidance principle and an intervention principle in making decisions. I conclude by examining a case study involving bone marrow donation by a young child to her sister. (shrink)