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)

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

Information on the factors influencing parents’ decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities. Electronic searches of 13 databases were conducted. These searches were supplemented by hand-searching Google Scholar and bibliographies and citation tracing. Thomas and Harden’s thematic synthesis method was used to synthesise (...) data from identified studies. Twenty-four papers were identified and reviewed, but two papers were removed following quality assessment. Three main themes were identified through systematic synthesis. Theme 1, entitled ‘all life is precious’, described parents’ perception of the importance of the fetus’ life, a fatalistic view of their situation alongside moral implications as well as the implications decisions would have on their own life, in consideration of previous life experiences. Theme 2 contained two sub-themes which considered the parent’s own imagined future and the influence of other people’s experiences. Finally, Theme 3 presented three sub-themes which may influence their parental decision-making: These described parental consideration of the quality of life for their unborn child, the possibility of waiting to try for another pregnancy, and their own responsibilities and commitments. The first review to fully explore parental decision-making process following lethal, life-limiting, or severely debilitating prenatal diagnosis provided novel findings and insight into which factors influenced parents’ decision-making process. This comprehensive and systematic review provides greater understanding of the factors influential on decision-making, such as hope, morality and potential implications on their own and other’s quality of life, will enable professionals to facilitate supported decision-making, including greater knowledge of the variables likely to influence parental choices. (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)

Health care workers or others may wish to override parental decisions because of their impact on the health or safetySafety of a child or others. Justification of such an action requires two types of principle: an authorityAuthority principle that designates the process for reversal, and anPrincipal, interventionintervention principleIntervention principle that specifies the grounds for reversal. It is generally accepted that states may overruleOverruleparentsParents’ decisions for good cause. I argue that the role of the state is to provide sufficient protection (...) against parental malfeasance. Parental malfeasance can be construed as either exposing a child to harmHarm or as insufficient defense of the child’s interestsChild's interests. I propose a test to determine what sorts of parental decisions might trigger intervention. I also propose constraints on government action to minimize government unfairness in applying the test. I show how this plays out in application. (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)

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)

Birchley9s critique of the harm threshold for overriding parental decisions is successful in demonstrating that the harm threshold, like the best interests standard, suffers from the problem of indeterminacy. However, his focus on critiquing empirical rather than normative arguments for the harm threshold means that his broad conclusion that it is ‘ill-judged’ is not justified. Advocates of the harm threshold can accept that the concept of harm to a child is indeterminate, yet still invoke strong normative arguments for this (...) way of responding to parental decisions that conflict with medical recommendations. I suggest that Birchley9s discussion, rather than showing that the harm threshold is mistaken, instead highlights the importance of developing a comprehensive account of children9s interests, for proponents of a best interests approach and for advocates of the harm threshold. (shrink)

Richard Thaler and Cass Sunstein define a nudge as “any aspect of the choice architecture that alters people's behavior in a predictable way without forbidding any options or significantly changing their economic incentives.” Much has been written about the ethics of nudging competent adult patients. Less has been written about the ethics of nudging surrogates’ decision‐making and how the ethical considerations and arguments in that context might differ. Even less has been written about nudging surrogate decision‐making in the (...) context of pediatrics, despite fundamental differences that exist between the pediatric and adult contexts. Yet, as the field of behavioral economics matures and its insights become more established and well‐known, nudges will become more crafted, sophisticated, intentional, and targeted. Thus, the time is now for reflection and ethical analysis regarding the appropriateness of nudges in pediatrics. We argue that there is an even stronger ethical justification for nudging in parental decision‐making than with competent adult patients deciding for themselves. We give three main reasons in support of this: (1) child patients do not have autonomy that can be violated (a concern with some nudges), and nudging need not violate parental decision‐making authority; (2) nudging can help fulfill pediatric clinicians’ obligations to ensure parental decisions are in the child's interests, particularly in contexts where there is high certainty that a recommended intervention is low risk and of high benefit; and (3) nudging can relieve parents’ decisional burden regarding what is best for their child, particularly with decisions that have implications for public health. (shrink)

To most people outside the relevant laboratories and operating rooms, xenotransplants and artificial organ transplants are bizarre. While the bizarre scares many away and angers others, Lesley A. Sharp approached it and asked, What behooves medical research to take organs out of pigs and primates and design organs out of metal and plastic and use them to replace failing organs in humans? Sharp attended years of conferences, visited countless hospitals and laboratories, and interviewed engineers, scientists, and surgeons to explore the (...) choices and implicit values of decision‐makers in alternative transplantation. The Transplant Imaginary: Mechanical Hearts, Animal Parts, and Moral Thinking in Highly Experimental Science is a rich resource for philosophers who wish to expound on the morality of implanting nonhuman animal and mechanical organs into humans. The author's thorough ethnographic survey of xeno‐ and biomechanical transplant research leads well into two lines of questioning. First, how ethical is the pursuit of alternative transplant? Second, what is essential for transplant researchers to do their jobs ethically? (shrink)

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...

Objective To assess parental permission for a neonate's research participation using the MacArthur competence assessment tool for clinical research (MacCAT-CR), specifically testing the components of understanding, appreciation, reasoning and choice. Study Design Quantitative interviews using study-specific MacCAT-CR tools. Hypothesis Parents of critically ill newborns would produce comparable MacCAT-CR scores to healthy adult controls despite the emotional stress of an infant with critical heart disease or the urgency of surgery. Parents of infants diagnosed prenatally would have higher MacCAT-CR scores than (...) parents of infants diagnosed postnatally. There would be no difference in MacCAT-CR scores between parents with respect to gender or whether they did or did not permit research participation. Participants Parents of neonates undergoing cardiac surgery who had made decisions about research participation before their neonate's surgery. Methods The MacCAT-CR. Results 35 parents (18 mothers; 17 fathers) of 24 neonates completed 55 interviews for one or more of three studies. Total scores: magnetic resonance imaging (mean 36.6, SD 7.71), genetics (mean 38.8, SD 3.44), heart rate variability (mean 37.7, SD 3.30). Parents generally scored higher than published subject populations and were comparable to published control populations with some exceptions. Conclusions The MacCAT-CR can be used to assess parental permission for neonatal research participation. Despite the stress of a critically ill neonate requiring surgery, parents were able to understand study-specific information and make informed decisions to permit their neonate's participation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:When the Political Becomes Personal:Circumcision as a Cause and as a Parental DecisionJ. Steven SvobodaAs I prepared for the arrival of my first child, a son, a central activity that I previously saw as political suddenly also became very personal. I had founded a non-profit organization in 1997 devoted to educating the world that genital cutting of a child, regardless of a child's gender, is unnecessary and harmful. (...) This includes male circumcision. In 2001, as part of my non-profit work I led a team that went to the United Nations in Geneva and for the first time, put the issue of male circumcision as a human rights violation in the United Nations record. At the time, my then wife was pregnant with our first child, a son. (I had the ultrasound photo of my son-to-be on my nightstand while in Geneva.) Now the circumcision question would be posed to me!A few months after the Geneva trip, when it came time in early 2002 for my son's birth on the US territory of Guam, I naturally was never going to agree to the procedure. Nevertheless, I was trying not to inject my own beliefs into the arrival of my first child. My children's mother, while Jewish, is a pediatrician who always had some doubts about the wisdom of circumcision and easily agreed with my desire to keep our son intact. No one in either of our families had any serious problems with our decision.The nurse at the hospital in Guam where my wife worked and gave birth asked me a total of five separate times if I wanted my son to be circumcised. Each time, I answered, "No," without saying more, until the fifth time, when I politely added, "You do know that there is no medical reason for this to be done, right?" The nurse replied in a chirpy voice, "I know." I then asked, "Why do you ask parents about it then?" She replied, "Because they want it sometimes." Well, the odd thing about that is there is no other medically unnecessary procedure on their children for which parents are repeatedly solicited. And if I had agreed even one time, I am sure that my child would have been circumcised [End Page 73] without any follow-up questions to make sure I really wanted this done. Besides, at least in the absence of any medical condition making it necessary (which is essentially never the case), it should not be my decision to make, nor his mother's, but rather the child's whose body it is.The oddest aspect of this whole chain of events may be that I was not given a single shred of information explaining why I should support my son being cut. My son had zero issues after being left intact, and how could it be otherwise? My advice, naturally, to parents expecting boys (or girls, or intersex children, for that matter) is to educate yourself. You will learn, the more you look into these issues, that there are thousands of people around the world, including countless physicians and other experts, who believe childhood circumcision is as outmoded, useless, and as harmful a practice as footbinding. Why not leave the choice for the child to make about their own body? No asserted medical reason withstands the most minimal scrutiny. And religious claims must stop at the boundaries of another person's body, even if the person is your child. Parents: you have the right to teach your children your beliefs, but your children may not follow your beliefs, and they have the right to make their own decisions, so please consider refraining from marking their bodies with your religion. Two months to the day after his birth, I was holding my son in Washington, DC, having just traveled halfway around the world from Guam. (I was in DC to receive the National Organization of Circumcision Information Resource Center's (NOCIRC) Human Rights Award, which I was presented with for my founding of the non-profit.)My own experience with circumcision strongly influenced my decision. For a decade, I felt that no other single... (shrink)

Many people move house at some point during their childhood and not rarely more than once. While relocations are not always harmful for under-aged children, they can, and frequently do, cause great disruption to their lives by severing their social ties as well as any attachments that they might have to their neighbourhood, town, or wider geographical region, with long-lasting psychological effects in some cases. Since it is increasingly recognised within normative philosophy as well as within Western societies that older (...) minors should have the final say over certain issues that significantly affect their lives (think, for instance, of custody disputes, decisions about whether to get specific vaccinations or use contraceptives), this raises the question: Can it be morally incumbent upon parents to give their minor children a veto over family relocation? This article argues that the answer is affirmative. Specifically, it suggests that such duties exist if and only if (i) parents are not morally required to either relocate their families or stay put, (ii) the stakes of the decision about a family relocation are fairly low, and (iii) the children have the competence to make these decisions, as many older minors do. (shrink)

The worldwide COVID-19 pandemic has shed more light on the difficulty of making health care decisions integrating scientific knowledge and values associated to life and death issues, human suffering, quality of life, economic losses, liberty of movement, etc. But the difficulties related to health care decisions and the use of innovative drugs or technologies are not new, and many countries have created agencies that have the mandate to evaluate new technologies in health care. Health Technological Assessment (HTA) reports’ aim is (...) to guide the decision makers in these difficult matters. There are two ethical components in HTA. The first is the report’s presentation of an ethical evaluation of the technology. The second is the value-ladenness of the HTA decision-making process itself. When implicit value judgments are not elicited, the justification of the final decision cannot be transparent. The present paper aims to identify and elicit the implicit value-judgments related to each step of the HTA process. This research is grounded on an applied ethics decision-making paradigm based on the role of value judgments in the decision-making process. The first part discusses two different approaches to values and value judgments in HTA. In the second part, citations mentioning value judgments extracted from a systematic review on the integration of ethics into HTA were categorized to elicit the value judgments and their criteria for each different HTA decision-making steps. The results show that there are 18 decision-making steps in the HTA process where 23 implicit value-judgments can be recognized. The range of these value judgments encompasses the whole HTA process: from the initial request, the presenting of the principal issues, to the final report’s dissemination. Since stakeholders need to understand which value judgments the conclusion of a report relies on, eliciting the implicit value judgments in the HTA decision-making process should yield more transparency. (shrink)

The scarcity of human organs requires the transplant community to make difficult allocation decisions. This process begins at individual medical centers, where transplant teams decide which patients to place on the transplant waiting list. Each transplant center utilizes its own listing criteria to determine if a patient is eligible for transplantation. These criteria have historically considered preexisting affective and psychotic disorders to be relative or absolute contraindications to transplantation. While attitudes within the field appear to be moving away from this (...) practice, there is no data to confirm that eligibility criteria have changed. There are no nationwide guidelines detailing the manner in which affective and psychotic disorders should impact transplant eligibility. Individual transplant centers thus form their own transplant eligibility criteria, resulting in significant inter-institution variability. Data from the 1990s indicates that the majority of transplant programs considered certain psychiatric illnesses, such as active schizophrenia, to be absolute contraindications to transplantation. A review of literature reveals that no comprehensive data has been collected on the topic since that time. Furthermore, the limited data available about current practices suggests that psychiatric illness continues to be viewed as a contraindication to transplantation at some transplant centers. In light of this finding, we review psychiatric literature that examines the impact of affective and psychotic disorders on transplant outcomes and conclude that the presence of these disorders is not an accurate predictor of transplant success. We then discuss the requirements of justice as they relate to the creation of a just organ allocation system. We conclude that transplant eligibility criteria that exclude patients with affective and psychotic disorders on the basis of their psychiatric diagnosis alone are unjust. Just listing criteria must incorporate only those factors that have a causative effect on posttransplant morbidity and mortality. Justice also demands that we eliminate current inter-institution practice variations in favor of national transplant eligibility criteria. Given the limited data available about current practices, we call for an updated study investigating the manner in which affect and psychotic disorders impact transplant eligibility determinations. (shrink)

Making a career decision is one of the most complex development tasks faced by high school students who will graduate from school. Students need to believe that they would succeed in their effort to do the necessary tasks during the process of career decision-making. This belief is referred to as a career decision self-efficacy. This study examined the influence of parenting style on career decision self-efficacy through the mediation of proactive personality in senior high school students. (...) A total of 949 participants were involved in this study. Data were collected using Career Decision Self-Efficacy Scale-Short Form, Parental Authority Questionnaire, and Proactive Personality Scale. Data were analyzed using the regression technique with the Macro Process from Hayes. The regression results show that fathers’ and mothers’ authoritative parenting directly affect career decision self-efficacy; fathers’ and mothers’ authoritarian parenting, as well as mother's permissive parenting, affect the career decision self-efficacy only through the mediation of proactive personality. Also, fathers’ permissive parenting did not have a significant effect on career decisions self-efficacy either directly or indirectly through a proactive personality. Therefore parents – both father and mother – need to involve in developing career decision self-efficacy of their children through parenting process, especially authoritative parenting. (shrink)

In 2017 Ploug and Holm argued that anonymizing individuals in the Danish circumcision registry was insufficient to protect these individuals from what they regard as the potential harms of being in the registry. We argue that Ploug and Holm’s fears in each of the areas are misguided, not supported by the evidence, and could interfere with the gathering of accurate data. The extent of the risks and harms associated with ritual circumcision is not well known. The anonymized personal health data (...) supplemented with the circumcision registry will enable more precise research into the medical consequences of ritual circumcision, and allow parents to make more fully informed decisions about circumcision with minimal, if any, adverse consequences. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the 'AP-physician-family-relationship' and the dominant role Chinese families play in medical decision-making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese (...) writers from Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives 'weak' family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re-interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its 'parens patriae' power to defend the defenseless in society and the integrity of the medical profession. (shrink)

The story of Ashley, a nine-year-old from Seattle, has caused a good deal of controversy since it appeared in the Los Angeles Times on January 3, 2007.1 Ashley was born with a condition called static encephalopathy, a severe brain impairment that leaves her unable to walk, talk, eat, sit up, or roll over. According to her doctors, Ashley has reached, and will remain at, the developmental level of a three-month-old.

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the ‘AP‐physician‐family‐relationship’ and the dominant role Chinese families play in medical decision‐making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese (...) writers from Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives ‘weak’ family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re‐interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its ‘parens patriae’ power to defend the defenseless in society and the integrity of the medical profession. (shrink)

Volume 24, Issue 10, October 2024, Page 117-119.

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in (...) Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient. Surveys were statistically analysed by comparing physicians’ and parents’ perspectives and by evaluating factors associated with children’s actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of information (...) provision examined, parents’ and physicians’ perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient’s age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making. (shrink)

RésuméIntroductionLa motivation est. un thème crucial et répandu en médecine. Que. ce soit pour un scénario clinique ou chirurgical, l’acceptation de prendre une pilule ou de se rendre à une consultation est. essentielle au succès du traitement médical. La “décennie du cerveau” a fourni aux praticiens des données neuroscientifiques substantielles sur le comportement humain, a aidé à expliquer pourquoi les gens font ce qu’ils font et a créé le concept de “cerveau motivé”. Les résultats de la psychologie empirique ont stratifié (...) la motivation en étapes de changement, qui sont devenues plus complexes au fil des décennies. Cette recherche vise à améliorer la compréhension de la façon dont les gens prennent des décisions concernant leur santé et comment mieux comprendre les stratégies et les techniques pour les aider à résoudre les problèmes d’ambivalence de manière efficace et ciblée.MéthodesNous établissons un dialogue avec la phénoménologie de la volonté de Ricoeur afin de comprendre le sens de ces découvertes scientifiques. À partir de la phénoménologie husserlienne, Paul Ricoeur a développé sa pensée en s’éloignant de l’idéalisme transcendantal en émancipant les structures intentionnelles de la volonté du domaine de la perception. Résultats: En introduisant les concepts de volontaire et d’involontaire, Ricoeur s’est. écarté du dualisme cartésien, qui fait du corps un corps d’objet, cible de vicissitudes naturelles. Le nouveau dualisme entre volontaire et involontaire est. traité par référence à ce que Ricoeur a appelé le mystère central de l’existence incarnée, qui considère l’homme “double dans l’humanité, simple dans lavitalité”. Cette dualité permet de considérer le cerveau comme l’organe naturel du comportement dans le corps humain et d’utiliser la psychologie empirique comme moyen d’échapper aux subjectivations superficielles des concepts.ConclusionLa simplicité (ou unité) d’existence invite la médecine à repenser certaines de ses hypothèses philosophiques, de telle sorte que les patients puissent être considérés comme des sujets autonomes avec des projets de vie d’auteur. L’anthropologie ricourienne a un impact éthique profond sur la manière dont la médecine devrait utiliser la technologie, ce qui découle de résultats de psychologie empirique. L’utilisation de ces nouvelles connaissances doit également faire l’objet d’une inspection minutieuse, car elle modifie le rôle social de la science médicale. (shrink)

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. Each of these frameworks centred on a different key moral concept including harm, constrained parental autonomy, best interests, medically reasonable alternatives, responsible thinking and rationality. (shrink)

In this paper, I offer a view beyond that which would narrowly reduce the role of parents in medical decision making to acting as custodians of the best interests of children and toward an account of family authority and family autonomy. As a fundamental social unit, the good of the family is usually appreciated, at least in part, in terms of its ability successfully to instantiate its core moral and cultural understandings as well as to pass on such commitments (...) to future generations. The putative rights of children to expression, information, freedom of thought, conscience, religion, and to freedom of association with others are, in this essay, assessed from the perspective of those conditions necessary for the family to function as a moral community. In so doing, I respond to the move to liberate children from parental authority and to effect the transformation of the family as implied by the United Nations’ "Convention on the Rights of the Child" and the pediatric bioethics it supports. (shrink)

This paper argues that liberal tenats that justify intervention to promote the welfare of an incompetent do not suffice as a basis for analyzing parent-child relationships, and that this inadequacy is the basis for many of the problems that arise when thinking about the state's role in resolving family conflicts, particularly when monitoring parental discretion in medical decision-making on behalf of a child. The state may be limited by the best interest criterion when dealing with children, but parents (...) are not. The state's relation with the child is formal while the parental relation is intimate, having its own goals and purposes. While the liberal canons insist on the incompetent one's best interest, parents are permitted to compromise the child's interests for ends related to these familial goals and purposes. Parents decisions should be supervened, in general, only if it can be shown that no responsible mode of thinking warrants such treatment of a child. Keywords: proxy medical consent, children's rights, state's protection of children, parental authority and the state's intervention, paternalism, liberalism, parental values CiteULike Connotea Del.icio.us What's this? (shrink)

Futile treatment. Do not resuscitate. These terms and the thoughts they evoke may be unfamiliar to families with ill children. Similarly, laws, such as the Americans with Disabilities Act or the Emergency Medical Treatment and Active Labor Act, are probably unfamiliar. Yet these terms and laws, and, more important, their implications, are part of a new world of health care into which more families are thrust—the world of wrenching and complicated decisions.Although the number of these situations is increasing and even (...) predictable, the infrastructure of support services for families dealing with these medical decisions for seriously ill children has not been adequately addressed or developed. Parents know that some children are born with or develop serious illnesses and die. Amid absorbing large amounts of new information and interpreting the parameters and implications of what they are learning about their child's condition, families are forced by circumstances to assess—and to act on—their most critical, and perhaps previously unexamined, values. (shrink)

Our objective is to understand how parents and children perceive their roles in decision making about research participation. Forty-five children (ages 4-15 years) with or without a chronic condition and 21 parents were the participants. A semistructured interview assessed perceptions of up to 4 hypothetical research scenarios with varying levels of risk, benefit, and complexity. Children were also administered the Peabody Picture Vocabulary Test, Third Edition, to assess verbal ability, as a proxy for the child's cognitive development. The audiotaped (...) interviews were transcribed and analyzed for themes related to parent and child decision-making roles. Both parents and children varied in their perceptions of decision-making roles. Child perceptions of parental influence on decision making as knowledge-based increased with cognitive development, whereas perceptions of parental influence as power-based decreased. Both children and parents commented that they would collaborate with each other when making decisions. Collaborative decision making appeared to increase with cognitive development. These findings suggest that approaches to child assent and parent permission should consider the parent-child relationship and how children and families typically make decisions. Future research is necessary to explain variation in the process of research decision making across children and families, explore the role of collaboration on children's decision-making skills, and understand developmental trajectories and mechanisms related to research decision making. (shrink)

The men and women who serve in the armed forces, in the words of Major General Joseph Caravalho, “sign a blank check, co-signed by their families, payable to the Army, Navy, Air Force, or Marines, up to and including their lives.” It is human nature to consider such a pact in polarized terms; the pact concludes in either a celebratory homecoming or funereal mourning. But in reality, surviving catastrophic injury may incur the greatest debt. The small but real possibility of (...) losing the ability to bear biological children due to genitourinary combat injury has been a topic of discussion in hushed tones, behind closed doors. But as policy changes move the conversation into the open, we must be fully aware of the far-reaching and long-term impacts of decisions on those who have sustained genitourinary injury. In January 2016, Secretary of Defense Ashton Carter outlined a set of reforms that would improve the quality of life for military families by recognizing the importance of maintaining fertility, even in the face of severe injury. This first promising step could build a solid foundation of insuring fertility preservation for wounded service members with genitourinary injury, and it could set a precedent beyond the military for insuring treatment for people who have lost their reproductive capacity. Thus, the ethical challenges raised by the new policy require careful analysis. (shrink)

The purpose of this study was to explore the relationship between parenting styles and career decision-making difficulties in college students, and uncovered the mediating roles of core self-evaluation and career calling. A total of 1,127 undergraduates were recruited to complete the questionnaires about parenting styles, core self-evaluation, career calling, and career decision-making difficulties. The results showed that: Positive and negative parenting styles could positively predict career decision-making difficulties in college students. Core self-evaluation and career calling mediated the (...) relationship between parenting styles and career decision-making difficulties. Sequential dual mediators only found in which positive paternal and maternal parenting styles predict career decision-making difficulties through core self-evaluation and career calling. Further analysis revealed gender difference in the relationship between parenting styles and career decision-making difficulties. The relation between paternal positive parenting style and career decision-making difficulties was significant in male students, but absent in female students; the relation between maternal positive parenting and career decision-making difficulties and the relation between paternal negative parenting and career calling were significant in female students, but absent in male students; and the relation between career calling and career decision-making difficulties was greater in male than in female. The current study expanded and deepened those existing understandings about the relationship between parenting styles and adolescents’ career decisions, so as to further reveal its internal mechanism and provide more reasonable suggestions and targeted guidance for career counseling. (shrink)

The growing phenomenon of teenage pregnancy introduces the problem of who should serve as surrogate decision makers for the children of adolescent parents. The justifications which sanction society's grant of presumptive decision making authority for adult parents, and the rationales and empirical evidence supporting a central role for adolescents who wish to make medical decisions regarding their own care, together suggest that older adolescent parents should be viewed as the presumptive decision makers for their children. There is, (...) however, empirical evidence that adolescent parents lack the cognitive abilities of childless adolescents of the same age and that many exhibit lower levels of emotional stability, sensitivity to infant needs, and social adjustment. These deficiencies, where present, undermine the very justifications for allowing adolescents to make medical decisions for their children. These findings are strong enough to justify a greater level of watchfulness over the competency and decisions of those adolescents who wish to make decisions for their children, but not definitive enough to conclude that, as a group, they be presumed incapable of making those decisions. (shrink)

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex’s parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex’s (...) developmental disabilities. Second, Alex’s parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex’s parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child. (shrink)

This study investigated Belgian and Dutch parental opinions on confidentiality and consent regarding medical decisions about adolescents. Through an online survey, we presented six cases (three on confidentiality, and three on consent) to 1,382 Belgian and Dutch parents. We studied patterns in parental confidentiality and consent preferences across and between cases through binomial logistic regressions and latent class analysis. Participants often grant the right to consent for a treatment to the adolescent, but the majority diverges from the adolescent’s (...) preferences regarding confidentiality. More educated participants would rather not be informed about cases regarding a sexually transmitted disease or depression than lower educated participants. Further analysis shows that participants’ preferences correspond to authoritative (47%), permissive (30%) and authoritarian (17%) parenting styles. Belgian and Dutch parents are willing to grant some degree of autonomy, but they want to be informed about specific health issues. Parental views on confidentiality and granting consent appear to mirror existing parenting styles. (shrink)

Bioethics has dedicated itself to exploring and defending both reasons for and against certain aspects of clinical care, biomedical research and health policy, including what decisions must be made, who should make them, and how they should be made. In pediatrics, it’s widely acknowledged that parents’ reasons may matter pragmatically; attending to parents’ reasons is important if we want to work with families. Yet the conventional view in pediatric ethics is that parents’ reasons are irrelevant to whether a decision (...) is permissible or impermissible according to accepted ethical standards. In this paper, we explore whether parents’ reasons matter ethically and, if so, in what way and for whom. First, we clarify what we mean by ‘reasons.’ Second, we provide an overview of how reasons are typically treated in medical decision-making and pediatric ethics. Third, we analyze a hypothetical pediatric case to illustrate how changing reasons can transform ethical analyses, including by contributing to where and how clinicians and ethicists draw the boundaries intrinsic to common pediatric ethical frameworks. We push back against the conventional view and argue that parents’ reasons matter ethically in several ways. We call for further research on the role of parents’ reasons in clinical ethics deliberation. (shrink)

The aim of this article is to generate knowledge about parents’ participation in life-and-death decisions concerning their very premature and/or critically ill infants in hospital neonatal units. The question is: what are parents’ attitudes towards their involvement in such decision making? A descriptive study design using in-depth interviews was chosen. During the period 1997-2000, 20 qualitative interviews with 35 parents of 26 children were carried out. Ten of the infants died; 16 were alive at the time of the interview. (...) The comparative method (grounded theory) was used to analyse the data. The analysis was carried out continuously and in parallel with data collection. Six categories were revealed by the analysis: indecision and uncertainty (ambivalence); information and communication; participate, but do not decide; seeming to be included; the parents’ child; and individual consideration. The findings appear to indicate that parents agree that they should not have the final word in decisions concerning their infants’ future life or death. Such a responsibility would put too heavy a burden on parents who lack the medical knowledge and the professional experience needed to make such a decision, and would be likely to lead to them experiencing strong feelings of guilt. The findings show that parents should be well informed and listened to during the whole decision-making process. Their primary concern was how nurses and physicians communicate with parents who are experiencing a crisis, and how this serious information is presented. (shrink)

The case presented here is tragic, not just in the sense of being a sad story, but in the dramatic meaning of tragedy. It presents us with a situation where there is no clear path, where moral ambiguity exists, and where no possible solution could unequivocally be declared the right or good one. Ethical deliberation can help here, but only as a way of clarifying the issues and offering reasonable solutions. It cannot show us the one right way.Baby G has (...) profound medical conditions, including respiratory failure, a chest wall deformity that will require surgery, and profound neurodevelopmental disability. Even a best case scenario portends a shortened lifespan and.. (shrink)

In “Acquiescence Is Not Agreement: The Problem of Marginalization in Pediatric Decision Making,” Caruso Brown argues that clinicians and ethicists should attend to voices marginalized by hie...