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The principle that physicians should always act in the best interests of the present patient is widely endorsed. At the same time, and often within the same document, it is recognised that there are appropriate exceptions to this principle. Unfortunately, little, if any, guidance is provided regarding which exceptions are appropriate and how they should be handled. These circumstances might be tenable if the appropriate exceptions were rare. Yet, evaluation of the literature reveals that there are numerous exceptions, several of (...) |
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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... |
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In the summer of 1998, the Wisconsin State legislature amended its child protection laws. Under new child abuse provisions, Wisconsin judges can confine pregnant women who abuse alcohol or drugs for the duration of their pregnancies. South Dakota enacted similar legislation almost simultaneously. The South Dakota statute requires mandatory drug and alcohol treatment for pregnant women who abuse those substances and classifies such activity as child abuse. In addition, the South Dakota legislation gives relatives the power to commit pregnant women (...) |
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In the summer of 1998, the Wisconsin State legislature amended its child protection laws. Under new child abuse provisions, Wisconsin judges can confine pregnant women who abuse alcohol or drugs for the duration of their pregnancies. South Dakota enacted similar legislation almost simultaneously. The South Dakota statute requires mandatory drug and alcohol treatment for pregnant women who abuse those substances and classifies such activity as child abuse. In addition, the South Dakota legislation gives relatives the power to commit pregnant women (...) |
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Shared decision-making between patients and physicians strives to balance decisional responsibility for clinical decisions. Directed by patients, SDM incorporates patients’ values and prefere... |
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The paper analyses the application of the best interest standard in the medical care of extremely preterm babies. It proposes that as long as the parents base their decision on a well-founded medical opinion regarding the neonate’s diagnosis and prognosis and are not victims of superstition or prejudice, medical professionals are obligated to respect the parents’ informed consent, even if the professionals disagree with the parents’ opinion. In their assessments of the neonate’s interest, medical professionals can be primarily guided by (...) |
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Infants are unable to make their own decisions or express their own wishes about medical procedures and treatments. They rely on surrogates to make decisions for them. Who should be the decision-maker when an infant’s biological parents are also minors? In this paper, we analyse a case in which the biological mother is a child. The central questions raised by the case are whether minor parents should make medical decisions on behalf of an infant, and if so, what are the (...) |
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Children dependent on life-prolonging medical technology are often subject to a constant background risk of sudden death or catastrophic complications. Such children can be cared for in hospital, in an intensive care environment with highly trained nurses and doctors able to deliver specialised, life-saving care immediately. However, remaining in hospital, when life expectancy is limited, can considered to be a harm in of itself. Discharge home offers the possibility for an improved quality of life for the child and their family (...) |
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Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support int... |
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:Use of the best-interests test as the legal standard to justify medical treatment in respect to legally incompetent adults or minors has come under sustained critique over the years. “Best interests” has variously been alleged to be indeterminate as well as susceptible to majoritarian ideology and inherent bias. It has also been alleged to be inferior to rights-based approaches. Against the background of several particularly hard cases involving minors discussed by Gillett in a prior article in this journal, this article (...) |
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Clinical ethics takes on a special cast in a rehabilitation clinic for psychosis where many patients come from severely disadvantaged backgrounds and many suffer from fluctuating decisional capacity. This paper illustrates several ethical issues—truth telling and partiality, prescribing concealed medication, questionable billing practices, industry collaboration, limits of confidentiality, grounds for abandonment and the primacy of autonomy—in the hope that discussing such matters will lead to a clearer framework for work with this population. |
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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 (...) |
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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 (...) |
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Non-beneficial paediatric research is vital to improving paediatric healthcare. Nevertheless, it is also ethically controversial. By definition, subjects of such studies are unable to give consent and they are exposed to risks only for the benefit of others, without obtaining any clinical benefits which could compensate those risks. This raises ethical concern that children participating in non-beneficial research are treated instrumentally; that they are reduced to mere instruments for the benefit of science and society. But this would make the research (...) |
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Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making to the extent (...) |
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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. |
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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 (...) |
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Standard views on surrogate decision making present alternative ideal models of what ideal surrogates should consider in rendering a decision. They do not, however, explain the physician''s responsibility to a patient who lacks decisional capacity or how a physician should regard surrogates and surrogate decisions. The authors argue that it is critical to recognize the moral difference between a patient''s decisions and a surrogate''s and the professional responsibilities implied by that distinction. In every case involving a patient who lacks decisional (...) |
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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... |
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Biomedical research involving human subjects is an arena of conflicts of interests. One of the most important conflicts is between interests of participants and interests of future patients. Legal regulations and ethical guidelines are instruments designed to help find a fair balance between risks and burdens taken by research subjects and development of knowledge and new treatment. There is an universally accepted ethical principle, which states that it is not ethically allowed to sacrifice individual interests for the sake of society (...) |
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In “The Harm Principle Cannot Replace the Best Interest Standard: Problems With Using the Harm Principle for Medical Decision Making for Children,” Bester argues that conceptual and normative diffi... |
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Clinicians are required to act in the best interest of neonates.However, it is not obvious that entry into a randomised controlled trial (RCT) is in a neonate’s best interest because such trials often involve additional onerous procedures (such as intramuscular injections) in return for which the neonate receives unproven treatment or a placebo.On the other hand, neonatology needs to develop its evidence base, and RCTs are central to this task. The solution posited here is based on two points. First, “best (...) |
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The COVID-19 pandemic during 2020–2022 raised ethical questions concerning the balance between individual autonomy and the protection of the population, vulnerable individuals and the healthcare system. Pediatric COVID-19 vaccination differs from, for example, measles vaccination in that children were not as severely affected. The main question concerning pediatric vaccination has been whether the autonomy of parents outweighs the protection of the population. When children are seen as mature enough to be granted autonomy, questions arise about whether they have the right (...) |
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The aim of this paper is to analyze an Intensive Care Unit case that required ethics consultation at a University Hospital in Northern Italy. After the case was resolved, a retrospective ethical analysis was performed by four clinical ethicists who work in different healthcare contexts. Each ethicist used a different method to analyze the case; the four general approaches provide insight into how these ethicists conduct ethics consultations at their respective hospitals. Concluding remarks examine the similarities and differences among the (...) |
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Respecting patient autonomy through the process of soliciting informed consent is a cornerstone of clinical ethics. In pediatrics, until a child becomes an adult or legally emancipated, that ethical tenet takes the form of respect for parental decision-making authority. In instances of respecting religious beliefs, doing so is not always apparent and sometimes the challenge lies not only in the healthcare provider’s familiarity of religious restrictions but also their knowledge of medical interventions themselves which might conflict with those restrictions. We (...) |
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Background Doctors sometimes encounter parents who object to prescribed treatment for their children, and request suboptimal substitutes be administered instead. Previous studies have focused on parental refusal of treatment and when this should be permitted, but the ethics of requests for suboptimal treatment has not been explored. Methods The paper consists of two parts: an empirical analysis and an ethical analysis. We performed an online survey with a sample of the general public to assess respondents’ thresholds for acceptable harm and (...) |
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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 (...) |
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In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a “good death” for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and, second, between accounts of a good death that minimally and maximally promote the dying child’s interests. I propose a narrowed account of the dying child’s interests, because they differ from the interests of non-dying children. Importantly, this account illustrates how disagreements at the (...) |
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This paper offers a narrative approach to understanding the process of clinical reasoning in complex cases involving medical uncertainty, moral ambiguity, and futility. We describe a clinical encounter in which the pediatric health care team experienced a great deal of conflict and distrust as a result of an ineffective process of interpretation and communication. We propose a systematic method for analyzing the technical, ethical, behavioral, and existential dimensions of the clinical reasoning process, and introduce the Clinical Reasoning Discussion Toolâa dialogical (...) |
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This paper reviews the ethical literature on conflicts between health professionals and parents about medical decision-making for children. We present the results of a systematic review which addressed the question ‘when health professionals and parents disagree about the appropriate course of medical treatment for a child, under what circumstances is the health professional ethically justified in overriding the parents’ wishes?’ We identified nine different ethical frameworks that were put forward by their authors as applicable across various ages and clinical scenarios. (...) |
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According to various accounts, intervention in pediatric decisions is justified either by the best interests standard or by the harm principle. While these principles have various nuances that distinguish them from each other, they are similar in the sense that both focus primarily on the features of parental decisions that justify intervention, rather than on the competency or authority of the parties that intervene. Accounts of these principles effectively suggest that intervention in pediatric decision making is warranted for both physicians (...) |
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The current legal status and medical ethics of routine or religious penile circumcision of minors is a matter of ongoing controversy in many countries. We focus on the United Kingdom as an illustrative example, giving a detailed analysis of the most recent British Medical Association guidance from 2019. We argue that the guidance paints a confused and conflicting portrait of the law and ethics of the procedure in the UK context, reflecting deeper, unresolved moral and legal tensions surrounding child genital (...) |
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An increasing number of children are adopted in the United States from countries where both medical care and environmental conditions are extremely poor. In response to worries about the accuracy of medical histories, prospective adoptive parents increasingly request genetic testing of children prior to adoption. Though a general consensus on the ethics of pre-adoption genetic testing (PAGT) argues against permitting genetic testing on children available for adoption that is not also permitted for children in general, a view gaining traction argues (...) |
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Many pediatric research regulations, including those of the United States, the Council for International Organizations of Medical Science, and South Africa, offer similar rules for review board approval of higher hazard studies holding out no therapeutic or direct benefit to children with disorders or conditions. Authorization requires gaining parental permissions and the children’s assent, if that is possible, and showing that these studies are intended to gain vitally important and generalizable information about children’s conditions; it also requires limiting the risks (...) |
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Many pediatric research regulations, including those of the United States, the Council for International Organizations of Medical Science, and South Africa, offer similar rules for review board approval of higher hazard studies holding out no therapeutic or direct benefit to children with disorders or conditions. Authorization requires gaining parental permissions and the children’s assent, if that is possible, and showing that these studies are intended to gain vitally important and generalizable information about children’s conditions; it also requires limiting the risks (...) |
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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 (...) |
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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 (...) |
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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 (...) |
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Edmund Pellegrino and David Thomasma’s writings have had a worldwide impact on discourse about the philosophy of medicine, professionalism, bioethics, healthcare ethics, and patients’ rights. Given their works’ importance, it is surprising that commentators have ignored their admission of an unresolved and troubling dilemma and inconsistency in their theory. The purpose of this article is to identify and state what problems worried them and to consider possible solutions. It is argued that their dilemma stems from their concerns about how to (...) |
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Recalcitrant disputes among health care providers and patients or their families may signal deep cultural differences about what interventions are needed or about clinicians’s professional duties. These issues arose in relation to a mother’s request for hymenoplasty or revirgination for her minor daughter to enable an overseas, forced marriage and protect her from an honor killing. The American College of Obstetrics and Gynecology committee recommends against members performing a hymenoplasty or other female genital cosmetic surgeries due to a lack of (...) |
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Families and clinicians approaching a child’s death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child’s best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician’s primary ethical duty to the paediatric patient. This approach does (...) |
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Modern parents, particularly in countries with highly developed public health systems, are not short of guidance about how to feed their children.1 Advice flows freely from many sources. State organs, particularly health departments and health care providers, offer advice with a reassuringly official provenance. Nutritional and pediatric societies, health-related charities, childcare manuals, parenting websites, and nutrition publications draw on scientific research in formulating their advice. Newspapers and magazines report the findings of the latest nutrition studies. Advice is also relayed informally (...) |
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Baselines are commonly used to enable harm identification. The temporal, the counterfactual and the duty-based normative baselines are the most prominent. Each of these captures an aspect of common conceptions of what it is to harm and be harmed. However, each baseline also fails to deliver workable identifications of harm when presented with certain types of case. Problematic cases are found readily in childhood, a venue in which harm identification is often called for. Without a reliable means of identifying harm (...) |
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The morality of abortion is a longstanding controversy. One may wonder whether it’s even possible to make significant progress on an issue over which so much ink has already been split and there is such polarizing disagreement (Boyle 1994). The papers in this issue show that this progress is possible—there is more to be said about abortion and other crucial beginning-of-life issues. They do so largely by applying contemporary philosophical tools to moral questions involving life’s beginning. The first two papers (...) |
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The justification for restrictive state intervention (RSI) such as criminal punishment or state reversal of parental decisions is called a limiting, or intervention (Buchanan and Brock 1989, 10), p... |
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Within and among societies, there are competing understandings of the status of children, including debates over whether they can bear rights and, if so, which rights they bear and against whom, and their capacity to make decisions and be held responsible and accountable for actions. There also are different understandings of what constitutes a family; what authority parents have over and regarding their children; and what should happen to children who are without parents because of death, desertion, or imprisonment. These (...) |
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Although there are many different moral arguments concerning the use of Best Interests in neonatal decision-making, there seems in practice a firm commitment to application of the concept. And yet, there is still little reflection given by practitioners about what employing a Best Interest determination means in infant care. The following lays out a comprehensive taxonomy of interest-sources in order to provide for more robust considerations of what constitutes best interests of/for neonates. |
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