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)

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 "best interest of the child" standard is central to both pediatric bioethics and the child rights community. In pediatric bioethics in the United States, the best interest of the child standard is cited as the guidance principle for parental decision-making.1 Likewise, in the child rights community, the best interest of the child standard is "of paramount consideration" ). Both approaches also recognize parental rights and responsibilities and support a role for (...) the maturing child in the decision-making process. Why, then, do members of the pediatric bioethics community and the child rights communities not speak the same language?This article was developed out of... (shrink)

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)

When making decisions for adults who lack decision-making capacity and have no discernable preferences, widespread support exists for using the Best Interests Standard. This policy appeals to adults and is compatible with many important recommendations for persons facing end-of-life choices.Common objections to the policy are discussed as well as different meanings of this Standard identified, such as using it to express goals or ideals and to make practical decisions incorporating what reasonable persons would want. For reasons of (...) consistency, fairness, and compassion, this standard should be used for all incapacitated persons. (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)

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)

Bester offers powerful arguments for why the harm principle cannot replace the best interest standard (BIS) as a guide for, and limit on, surrogate healthcare decision making (Bester 2018). Since B...

RésuméEn examinant les politiques et lois provinciales canadiennes relatives à la santé pédiatrique, on constate que le principe du meilleur intérêt (PMI) bénéficie d'un soutien généralisé. Cependant, dans le domaine de la philosophie, le PMI est confronté à une opposition sérieuse. Certes, il reste quelques défenseurs fervents du PMI dans la littérature contemporaine ; cependant, je soutiens que tandis que certains auteurs défendent nominalement le PMI, mon analyse révèle que ce qu'ils défendent réellement est au mieux une version édulcorée de (...) celui-ci. Dans cet article, je soutiens que non seulement le PMI doit être compris de manière restrictive, mais qu'un preneur de décision substitut (PDS) doit satisfaire au PMI — car un PDS est le fiduciaire de son patient. (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 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)

A new analysis of the Best Interests Standard is given and applied to the controversy about testing children for untreatable, severe late-onset genetic diseases, such as Huntington's disease or Alzheimer's disease. A professional consensus recommends against such predictive testing, because it is not in children's best interest. Critics disagree. The Best Interests Standard can be a powerful way to resolve such disputes. This paper begins by analyzing its meaning into three necessary and jointly sufficient (...) conditions showing it: is an "umbrella" standard, used differently in different contexts, has objective and subjective features, is more than people's intuitions about how to rank potential benefits and risks in deciding for others but also includes evidence, established rights, duties and thresholds of acceptable care, and can have different professional, medical, moral and legal uses, as in this dispute. Using this standard, support is given for the professional consensus based on concerns about discrimination, analogies to adult choices, consistency with clinical judgments for adults, and desires to preserve of an open future for children. Support is also given for parents' legal authority to decide what genetic tests to do. (shrink)

One recurring criticism of the best interests standard concerns its vagueness, and thus the inadequate guidance it offers to care providers. The lack of an agreed definition of ‘best interests’, together with the fact that several suggested considerations adopted in legislation or professional guidelines for doctors do not obviously apply across different groups of persons, result in decisions being made in murky waters. In response, bioethicists have attempted to specify the best interests standard, to reduce (...) the indeterminacy surrounding medical decisions. In this paper, we discuss the bioethicists’ response in relation to the state's possible role in clarifying the best interests standard. We identify and characterise two clarificatory strategies employed by bioethicists —elaborative and enumerative—and argue that the state should adopt the latter. Beyond the practical difficulties of the former strategy, a state adoption of it would inevitably be prejudicial in a pluralistic society. Given the gravity of best interests decisions, and the delicate task of respecting citizens with different understandings of best interests, only the enumerative strategy is viable. We argue that this does not commit the state to silence in providing guidance to and supporting healthcare providers, nor does it facilitate the abuse of the vulnerable. Finally, we address two methodological worries about adopting this approach at the state level. The adoption of the enumerative strategy is not defeatist in attitude, nor does it eventually collapse into (a form of) the elaborative strategy. (shrink)

Clinicians sometimes disagree about how much to honor surrogates’ deeply held cultural values or traditions when they differ from those of the host country. Such a controversy arose when parents requested a cultural accommodation to let their infant die by withdrawing life saving care. While both the parents and clinicians claimed to be using the Best Interests Standard to decide what to do, they were at an impasse. This standard is analyzed into three necessary and jointly sufficient (...) conditions and used to resolve the question of how much to accommodate cultural preferences and how to treat this infant. The extreme versions of absolutism and relativism are rejected. Properly understood, the Best Interests Standard can serve as a powerful tool in settling disputes about how to make good decisions for those who cannot decide for themselves. (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)

Federal efforts beginning in the 1990's have successfully increased pediatric research to improve medical care for all children. Since 1997, the FDA has requested 800 pediatric studies involving 45,000 children. Much of this research is "non-beneficial"; that is, it exposes pediatric subjects to risk even though these children will not benefit from participating in the research. Non-beneficial pediatric research (NBPR) seems, by definition, contrary to the best interests of pediatric subjects, which is why one state supreme court has essentially (...) prohibited it. It also appears that the only plausible rationale for this research is utilitarian, as it risks some children for the good of all. But that rationale is troubling. This Article answers two related questions: (1) What is the appropriate legal relationship between NBPR and the "best interests of the child" standard? (2) What is the ethical justification for this research? I argue that courts should hold that the "best interests" standard governs pediatric research. But, contrary to existing case law, courts must consider the benefits to each child, including pediatric subjects, from a policy that permits NBPR, and not simply consider that a non-beneficial protocol presents more risk than potential benefit to a child. Moreover, I argue that the justification for the practice need not be utilitarian. There is no need to appeal to the greater good to justify the research because each child has reason to endorse a policy permitting NBPR where there is a very low ceiling on acceptable risk, and each child has reason to participate in a practice from which she benefits. More controversially, I argue that each child, like other persons, has reason to help others when she can do so at little to no cost to herself. The Article then highlights practical implications of the offered justifications. (shrink)

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)

The ‘best interests’ decision making standard is used in clinical care to make necessary health decisions for non-capacitated individuals for whom neither explicit nor inferred wishes are known. It has been also widely acknowledged as a basis for enrolling some non-capacitated adults into clinical research such as emergency, critical care, and dementia research. However, the best interests standard requires that choices provide the highest net benefit of available options, and clinical research rarely meets this criterion. In (...) the context of modern norms of bioethics, the best interests standard rarely supports surrogate consent for research and should not be accepted as a routine provision. (shrink)

In his article, Bester (2018) criticizes the so-called “harm consensus” movement among a growing number of bioethicists and practitioners. He argues that the harm principle is unable to replace the...

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...

Two incompatible policies exist for guiding medical decisions for extremely premature, sick, or terminally ill infants, the Best Interests Standard and the newer, 20-year old "Baby Doe" Rules. The background, including why there were two sets of Baby Doe Rules, and their differences with the Best Interests Standard, are illustrated. Two defenses of the Baby Doe Rules are considered and rejected. The first, held by Reagan, Koop, and others, is a "right-to-life" defense. The second, held by (...) some leaders of the American Academy of Pediatrics, is that the Baby Doe Rules are benign and misunderstood. The Baby Doe Rules should be rejected since they can thwart compassionate and individualized decision-making, undercut duties to minimize unnecessary suffering, and single out one group for treatment adults would not want for themselves. In these ways, they are inferior to the older Best Interests Standard. A "negative" analysis of the Best Interests Standard is articulated and defended for decision-making for all incompetent individuals. (shrink)

In this commentary, the author discusses two strengths and two weaknesses of “Better than Best (Interest Standard) in Pediatric Decision-Making,” in which Lainie Friedman Ross critiques the best interest standard and proposes her own model of constrained parental autonomy (CPA) as a preferable replacement for both an intervention principle and a guidance principle in pediatric decision making. The CPA’s strengths are that it detaches from the language and concept of “best” and that it (...) better respects the family as a distinct and intimate decision-making unit. The first weakness of the framework, as an intervention principle, is that because it imports a Rawlsian understanding of basic interests, it neglects certain populations of children (for example, children with intellectual disabilities). The second weakness is that, as a guidance principle, it is unclear what actual guidance the CPA is positioned to offer and how that guidance would be justified. To conclude, this commentary offers suggestions for what should be required of both an intervention principle and a guidance principle in pediatric decision making. (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)

The ‘best interests’ standard is a highly seductive standard in English law. Not only does it appear to be fairly uncontroversial but it also presents as the most sensible, objective and ‘fair’ method of dealing with decision making on behalf of those who are perceived to be the most vulnerable within society. This article aims to provide a critical appraisal of how the standard has been applied within family law, to outline how the standard is (...) to be applied within healthcare law and, finally, to assess the relevance of the family law experience of the best interests standard to the operation of the standards as envisaged by the MCA. (shrink)

This article critically examines, and ultimately rejects, the best interest standard as the predominant, go-to ethical and legal standard of decision making for children. After an introduction to the presumption of parental authority, it characterizes and distinguishes six versions of the best interest standard according to two key dimensions related to the types of interests emphasized. Then the article brings three main criticisms against the best interest standard: (1) that it (...) is ill-defined and inconsistently appealed to and applied, (2) that it is unreasonably demanding and narrow, and (3) that it fails to respect the family. Finally, it argues that despite the best interest standard’s potent rhetorical power, it is irreparably encumbered by too much inconsistency and confusion and should be rejected. (shrink)

The genetic testing and screening of children has been fraught with controversy since Robert Guthrie developed the bacterial inhibition assay to test for phenylketonuria and advocated for rapid uptake of universal newborn screening in the early 1960s. Today with fast and affordable mass screening of the whole genome on the horizon, the debate about when and in what scenarios children should undergo genetic testing and screening has gained renewed attention. United States professional guidelines — both the American College of Medical (...) Genetics /American Society of Human Genetics statement and the American Academy of Pediatrics Statement on the genetic testing of children and the new AAP and ACMG joint policy statement and technical report — as well as the old UK guidelines by the Working Part of the Clinical Genetics Society and the new United Kingdom guidelines by the British Society of Human Genetics all give the same answer: genetic testing and screening should only be done if it is in the child’s best interest. (shrink)

In Bester’s article (2018) challenging the use of the harm principle and advocating sole reliance on the use of a best interest standard (BIS) in pediatric decision-making, we believe that the auth...

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 (...) class='Hi'>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)

The American Journal of Bioethics, Volume 12, Issue 6, Page 17-20, June 2012.

The American Journal of Bioethics, Volume 12, Issue 4, Page 17-19, April 2012.

This paper is a response to a paper by John Coggon ‘Best Interests, Public Interest, and the Power of the Medical Profession'. It argues that certain legal judgements in relation to best interests seek to change and curtail the role of the medical profession in this arena while simultaneously extending the jurisdiction of the courts. It also argues that we must guard against replacing one professional standard, that of the medical profession, with another, that of the (...) judiciary in this area. (shrink)

The idea of a patient's best interests raises issues in prudential value theory–the study of what makes up an individual's ultimate (nonmoral) good or well‐being. While this connection may strike a philosopher as obvious, the literature on the best interests standard reveals almost no engagement of recent work in value theory. There seems to be a growing sentiment among bioethicists that their work is independent of philosophical theorizing. Is this sentiment wrong in the present case? Does value (...) theory make a significant difference in interpreting best interests? In pursuing this question, I begin with a quick sketch of broad kinds of value theories, identifying representatives that are plausible enough to count as contenders. I then explore what each account suggests in (1) neonatal treatment decisions, and (2) decisions for patients in persistent vegetative states. I conclude that while these accounts converge somewhat in their interpretations of best interests, they also have importantly different implications. (shrink)

The case of Twin B involves the decision to send a newborn to a less intensive Level 2 special care nursery (SCN) than to the Level 3 neonatal intensive care unit (NICU) that is considered optimal by the physician. The physician’s acceptance of the transfer is against the child’s best interest and is due to parental convenience. In analyzing the case, we reject the best interest standard. Our rejection is partly supported by the views of (...) Douglas Diekema, John Hardwig, and Lannie Ross. Instead of the best interest standard, we offer and defend an approach we base on a microeconomic analysis of externalities, such as those involved with automobile emissions. This extends our previously presented general microeconomic approach to patient decision-making. It provides a clearer way to evaluate situations, like those of Twin B, in which burdens faced by family members may be used to determine the appropriate level of treatment for a decisionally incapable patient. (shrink)

Conscious but incapacitated patients need protection from both undertreatment and overtreatment, for they are exceptionally vulnerable, and dependent on others to act in their interests. In the United States, the law prioritizes autonomy over best interests in decision making. Yet U.S. courts, using both substituted judgment and best interests decision making standards, frequently prohibit the withdrawal of life-sustaining treatment from conscious but incapacitated patients, such as those in the minimally conscious state, even when ostensibly seeking to determine what (...) patients would have wanted. In the United Kingdom, under the Mental Capacity Act of 2005, courts decide on the best interests of incapacitated patients by, in part, taking into account the past wishes and values of the patient. This paper examines and compares those ethicolegal approaches to decision making on behalf of conscious but incapacitated patients. We argue for a limited interpretation of best interests such that the standard is properly used only when the preferences of a conscious, but incapacitated patient are unknown and unknowable. When patient preferences and values are known or can be reasonably inferred, using a holistic, all-things-considered substituted judgment standard respects patient autonomy. (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)

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