BackgroundIn the coming years, surrogate decision-making is expected to become highly prevalent in Japanese clinical practice. Further, there has been a recent increase in activities promoting advance care planning, which potentially affects the manner in which judgements are made by surrogate decision-makers. This study aims to clarify the grounds on which surrogate decision-makers in Japan base their judgements.MethodsIn this qualitative study, semi-structured interviews were conducted to examine the judgement grounds in surrogate decision-making for critical life-sustaining treatment choices in acute care (...) hospitals.ResultsA total of 228 participants satisfied the inclusion criteria, and 15 were selected for interviews. We qualitatively analysed the content of 14 interview transcripts, excluding one that did not meet the inclusion criteria. Based on this analysis, we extracted 4 core categories, 17 categories, 35 subcategories, and 55 codes regarding judgement grounds in surrogate decision-making. The four core categories were as follows: patient preference-oriented factor (Type 1), patient interest-oriented factor (Type 2), family preference-oriented factor (Type 3), and balanced patient/family preference-oriented factor (Type 4). The Type 4 core category represented attempts to balance the preferences of the patient with those of the surrogate decision-maker.ConclusionsSurrogate decision-makers based their decisions on important aspects related to a patient’s life, and they considered not only the patient’s preferences and best interests but also their own preferences. As the need for surrogate decisions will increase in the future, decision-makers will need to consider judgement grounds from a more diverse perspective. (shrink)

Volume 19, Issue 10, October 2019, Page 84-86.

This article provides a philosophical analysis of a putative right of the child to have their expressed views considered in matters that affect them. Article 12 of the United Nations Convention on the Rights of the Child 1989 is an influential and interesting statement of that right. The article shows that the child’s ‘right to a voice’ is complex. Its complexity lies in the problem of contrasting an adult’s normative power of choice with a child’s weighted views, in the various (...) senses in which we might consider the child’s views, and in the questions of how to weight those views and how their weighting makes a practical difference in coming to a decision. In so doing we criticise other accounts that simply regard a child’s views as having consultative value. We also make better sense of how we might weight a child’s views. The philosophical issues addressed in the article carry implications for how we might understand Article 12 that are not satisfactorily identified and addressed in the voluminous literature on Article 12 within childhood studies. These issues also have implications for how we might understand the distinction between adults and children in respect of powers of personal choice. We conclude by emphasising the importance and value of the right that Article 12 seeks to formally identify. (shrink)

This article provides a philosophical analysis of a putative right of the child to have their expressed views considered in matters that affect them. Article 12 of the United Nations Convention on the Rights of the Child 1989 is an influential and interesting statement of that right. The article shows that the child’s ‘right to a voice’ is complex. Its complexity lies in the problem of contrasting an adult’s normative power of choice with a child’s weighted views, in the various (...) senses in which we might consider the child’s views, and in the questions of how to weight those views and how their weighting makes a practical difference in coming to a decision. In so doing we criticise other accounts that simply regard a child’s views as having consultative value. We also make better sense of how we might weight a child’s views. The philosophical issues addressed in the article carry implications for how we might understand Article 12 that are not satisfactorily identified and addressed in the voluminous literature on Article 12 within childhood studies. These issues also have implications for how we might understand the distinction between adults and children in respect of powers of personal choice. We conclude by emphasising the importance and value of the right that Article 12 seeks to formally identify. (shrink)

There are two main ways of understanding the function of surrogate decision making in a legal context: the Best Interests Standard and the Substituted Judgment Standard. First, we will argue that the Best Interests Standard is difficult to apply to unconscious patients. Application is difficult regardless of whether they have ever been conscious. Second, we will argue that if we accept the least problematic explanation of how unconscious patients can have interests, we are also obliged to accept that the Substituted (...) Judgment Standard can be coherently applied to patients who have never been conscious at the same extent as the Best Interests Standard. We then argue that acknowledging this result is important in order to show patients respect. (shrink)

Children's competence to refuse or consent to medical treatment or surgery tends to be discussed in terms of the child's ability or maturity. This paper argues that the social context also powerfully influences the child's capacity to consent. Inner attributes and external influences are discussed using an analogy of the genes and the stars.

It is sometimes argued that autonomous decision-making requires that the decision-maker’s desires are authentic, i.e., “genuine,” “truly her own,” “not out of character,” or similar. In this article, it is argued that a method to reliably determine the authenticity (or inauthenticity) of a desire cannot be developed. A taxonomy of characteristics displayed by different theories of authenticity is introduced and applied to evaluate such theories categorically, in contrast to the prior approach of treating them individually. The conclusion is drawn that, (...) in practice, the authenticity of desires cannot be reliably determined. It is suggested that authenticity should therefore not be employed in informed consent practices in healthcare. (shrink)

Respect for autonomy is a central moral principle in bioethics. The concept of autonomy can be construed in various ways. Under the non-ideal conceptualization proposed by Beauchamp and Childress, everyday choices of generally competent persons are autonomous to the extent that they are intentional and are made with understanding and without controlling influences. It is sometimes suggested that authenticity is important to personal autonomy, so that inauthenticity prevents otherwise autonomous persons from making autonomous decisions. Building from Beauchamp and Childress’s theory, (...) this article develops a non-ideal authenticity-based conceptualization of personal autonomy. Factors that indicate inauthentic decision-making are explicated, and the full concept is defended from three expected objections. The theory is then tested on a paradigm case which has concerned theorists and practitioners for some time, namely the possible inauthenticity of anorexia nervosa patients’ decision-making. It is concluded that the theory seems to be fruitful in analyses of the degree of autonomy of patients’ decision-making, and that it succeeds in providing reliable action-guidance in practical contexts. (shrink)

Background: Current practice frequently fails to provide care consistent with the preferences of decisionally-incapacitated patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a possible way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. The present study thus assessed the views of experienced surrogates regarding the possible use of PPPs as a means to help make (...) treatment decisions for decisionally-incapacitated patients. -/- Methods: This qualitative study used semi-structured interviews to determine the views of experienced surrogates [n=26] who were identified from two academic medical centers and two community hospitals. The primary outcomes were respondents’ overall level of support for the idea of using PPPs and the themes related to their views on how a PPP should be used, if at all, in practice. -/- Results: Overall, 21 participants supported the idea of using PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient’s best interests, not based on substituted judgment. Major themes which emerged were that surrogates, not the patient’s preferences, should determine how treatment decisions are made, and concern that PPPs might be used to deny expensive care or be biased against minority groups. -/- Conclusions: Surrogates, like patients, strongly support the idea of using PPPs to help make treatment decisions for decisionally-incapacitated patients. These findings provide support for developing a PPP and assessing it in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions are made, including whether to use a PPP. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making. Future research is needed to assess this disagreement and consider ways to address it. (shrink)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

Obtaining informed consent from patients is a moral and legal duty and, thus, a key legitimation for medical treatment. The pivotal prerequisite for valid informed consent is decision-making capacity of the patient. Related to the question of whether and when consent should be morally and legally valid, there has been a long-lasting philosophical debate about freedom of will and the connection of freedom and responsibility. The scholarly discussion on decision-making capacity and its clinical evaluation does not sufficiently take into account (...) this fundamental debate. It is contended that the notion of free will must be reflected when evaluating decision-making capacity. Namely, it should be included as a part of the appreciation-criterion for decision-making capacity. The argumentation is mainly drawn on the compatibilism of Harry Frankfurt. A solution is proposed which at the same time takes the notion of free will seriously and enriches the traditional understanding of decision-making capacity, strengthening its justificatory force while remaining clinically applicable. (shrink)

IntroductionExtended decision -making through the use of proxy decision -makers has been enshrined in a range of International Codes, Professional Guidance and Statute,For example, the UK Mental Capacity Act section 9.1; The General Medical Council ; the US National Guardianship Association ; Nuffield Council on Bioethics ; CIOMS-WHO section 6. Court cases such as Re Quinlan in the US have also contributed to establishing the groundings for the legal status of the proxy, albeit in terms of who might be suitable (...) as a proxy in cases where there was no clear appointment of them by a still competent individual. and is now widely seen as a useful means through which we can exercise control over decisions that affect our lives when we have lost capacity to make these decisions for ourselves.I will here limit myself to discussion of proxy consent for adults appointed prior to the loss of competence by the person they are acting as proxy for. The issue of p. (shrink)

In this paper I get clearer on the considerations that ought to inform the evaluation and development of medico-legal competency criteria—where this is taken to be a question regarding the abilities that ought to be needed for a patient to be found competent in medico-legal contexts. In the “Decisional Competency in Medico-Legal Contexts” section I explore how the question regarding the abilities that ought to be needed for decisional competence is to be interpreted. I begin by considering an interpretation that (...) takes the question to be asking about the abilities needed to satisfy an idealized view of competent decision-making, according to which decisional competency is a matter of possessing those abilities or attributes that are needed to engage in good or effective or, perhaps, substantially autonomous or rational decision-making. The view has some plausibility—it accords with the way decisional competency is understood in a number of everyday contexts—but fails as an interpretation of the question regarding the abilities that should be needed for decisional competence in medico-legal contexts. Nevertheless, consideration of why it is mistaken suggests a more accurate interpretation and points the way in which the question regarding the evaluation of medico-legal competency criteria is to be answered. Building on other scholarly work in the area, I outline in the “Primary and Secondary Requirements” section several requirements that decisional competence criteria ought to satisfy. Then, in the “Applying the Framework” section, I say something about the extent to which medico-legal competency criteria, as well as some models of decisional competency proposed in the academic literature, fulfil those requirements. (shrink)

In this article, I argue that persons suffering from Body Integrity Identity Disorder (BIID) can give informed consent to surgical measures designed to treat this disorder. This is true even if the surgery seems radical or irrational to most people. The decision to have surgery made by a BIID patient is not necessarily coerced, incompetent or uninformed. If surgery for BIID is offered, there should certainly be a screening process in place to insure informed consent. It is beyond the scope (...) of this work, however, to define all the conditions that should be placed on the availability of surgery. However, I argue, given the similarities between BIID and gender dysphoria and the success of such gatekeeping measures for the surgical treatment of gender dysphoria, it is reasonable that similar conditions be in place for BIID. Once other treatment options are tried and gatekeeping measures satisfied, A BIID patient can give informed consent to radical surgery. (shrink)

Health professionals faced with refusal of life-saving treatment may wish to override a person's wishes, especially if that person suffers from a mental disorder. Mental illness does not automatically mean a patient is incapable of making decisions of this nature. It is not always clear whether an individual is legally competent to decide whether to undergo treatment or not. This article discusses a clinical example and analyses some of the moral implications.

Although advance directives are widely believed to be a key way to safeguard the autonomy of incompetent medical patients, significant questions exist about their moral authority. The main philosophical concern involves cases in which an incompetent patient no longer possesses the desires on which her advance directive was based. The question is, does that entail that prior expressions of medical choices are no longer morally binding? I believe that the answer is “yes.” I argue that a patient’s autonomy is not (...) respected by honoring the desires she used to have but no longer does. I also consider and reject the view that honoring an advance directive that reflects the patient’s previous values must be in that patient’s best interests. If that is correct, then advance directives in the kind of case at issue are not morally binding. (shrink)

The generic idea that the human should enhance seems uncontroversial. However, there is a great controversy about the meaning of enhance and the means that should be used. The possibilities of enhance humans through the use of biotechnology are a central theme of the current bioethical debate. Human Enhancement is the concept used to translate the idea that a biotransformation would generate a bioenhancement. In this article, we present a proposal for a factual-elementary framework of the generic concept of human (...) enhancement, in order to highlight the differences between a normative terminology and a descriptive terminology. Then, we contest the radical polarization that creates a harmful bias in the debate, arguing that what is at issue is a decision making based on non-universal value judgments. (shrink)

It is plausible that what possible courses of action patients may legitimately expect their physicians to take is ultimately determined by what medicine as a profession is supposed to do and, consequently, that we can determine the moral acceptability of voluntary euthanasia and physician-assisted suicide on the basis of identifying the proper goals of medicine. This article examines the main ways of defining the proper goals of medicine found in the recent bioethics literature and argues that they cannot provide a (...) clear answer to the question of whether or not voluntary euthanasia and physician-assisted suicide are morally acceptable. It is suggested that to find a plausible answer to this question and to complete the task of defining the proper goals of medicine, we must determine what is the best philosophical theory about the nature of prudential value. (shrink)

This articles assesses the arguments that bioethicists have presented for the view that patient’ autonomy has value over and beyond its instrumental value in promoting the patients’ wellbeing. It argues that this view should be rejected and concludes that patients’ autonomy should be taken to have only instrumental value in medicine.

In this article, I assess the position that voluntary euthanasia and physician-assisted suicide ought not to be accepted in the cases of persons who suffer existentially but who have no medical condition, because existential questions do not fall within the domain of physicians’ professional expertise. I maintain that VE and PAS based on suffering arising from medical conditions involves existential issues relevantly similar to those confronted in connection with existential suffering. On that basis I conclude that if VE and PAS (...) based on suffering arising from medical conditions is taken to fall within the domain of medical expertise, it is not consistent to use the view that physicians’ professional expertise does not extend to existential questions as a reason for denying requests for VE and PAS from persons who suffer existentially but have no medical condition. (shrink)

When it is considered to be in their best interests, withholding and withdrawing life-supporting treatment from non-competent physically ill or injured patients – non-voluntary passive euthanasia, as it has been called – is generally accepted. A central reason in support of the procedures relates to the perceived manner of death they involve: in non-voluntary passive euthanasia death is seen to come about naturally. When a non-competent psychiatric patient attempts to kill herself, the mental health care providers treating her are obligated (...) to try to stop her. Yet it has been suggested that death by suicide can be a part of the natural course of a severe mental illness. Accordingly, if the perceived naturalness of the deaths occurring in connection with non-voluntary passive euthanasia speaks for their moral permissibility, it could be taken that a similar reason can support the moral acceptability of the suicidal deaths of non-competent psychiatric patients. In this article, I consider whether the suicidal death of a non-competent psychiatric patient would necessarily be less natural than those of physically ill or injured patients who die as a result of non-voluntary passive euthanasia. I argue that it would not. (shrink)

A moral problem arises when a patient refuses a treatment that would save her life. Should the patient be treated against her will? According to an influential approach to questions of biomedical ethics, certain considerations pertaining to individual autonomy provide a solution to this problem. According to this approach, we should respect the patient’s autonomy and, since she has made an autonomous decision against accepting the treatment, she should not be treated. This article argues against the view that our answer (...) to the question of whether or not the refusing patient ought to be treated should be based on these kinds of considerations pertaining to individual autonomy and maintains that finding a plausible answer to this question presupposes that we resolve questions concerning subjectivity and objectivity of individual wellbeing. (shrink)

The moral status of business bluffing is a controversial issue. On the one hand, bluffing would seem to be relevantly similar to lying and deception. Because of this, business bluffing can be taken to be an activity that is at least prima facie morally condemnable. On the other hand, it has often been claimed that in business bluffing is part of the game and that therefore there is nothing morally questionable in business bluffing. In a recent issue of this journal, (...) Fritz Allhoff puts forward a novel defence of business bluffing. In this article, I will examine Allhoff’s arguments for the moral acceptability of business bluffing and argue that they are implausible. (shrink)

sirDr Campbell presents proponents of euthanasia with a dilemma.1 Only voluntary euthanasia is permissible; involuntary euthanasia is always impermissible. The question of allowing euthanasia arises most frequently when patients are terminally ill and experiencing great pain. But in these cases, he argues, if patients request euthanasia, their decision “is not freely chosen but is compelled by the pain”.2 It is easy to exaggerate the problem here; patients may have periods when they are pain-free and affirm repeatedly their desire that death (...) be hastened. Putting this aside, however, what should we conclude if euthanasia performed on patients who are suffering greatly is not voluntary?Dr Campbell concludes: “If the request to end one's life is not made freely, then it is doubtful that such requests ought to be followed”.2 An advance directive will not help, we are …. (shrink)

This article illustrates the less-acknowledged social construction of the concept of ‘incompetency’ and draws attention to the moral concerns it raises in health care encounters in the south Indian city of Chennai. Based on data drawn from qualitative research, this study suggests that surgeons subjectively construct the idea of incompetency through their understanding of the perceived circumstantial characteristics of the patients and family members they serve. The findings indicate that surgeons often underestimate patients and family members’ capacity based on constructed (...) assessments, which leads to paternalistic practice. In this article, I illustrate how these assessments influence the surgeons’ practices and provide the moral and practical justifications for their actions. The constructed knowledge becomes a source for drawing normative justification for surgeons’ actions and, in conjunction with socially enforced power relationships, results in patients and family members to be on the receiving end of disrespectful attitudes. Based on the data analysis and by drawing on philosophical analysis, I emphasize the need to focus on ‘respect for persons,’ to rethink the framework of ‘capacity,’ and to practice respect in hospital settings. (shrink)

“Informed consent” is a legal instrument that allows individuals to define their own interests and to protect their bodily privacy. In current medical practice, patients who have consented to surgery are considered to have implied consent to anaesthesia, even though anaesthesia is associated with its own particular set of risks and consequences that are quite separate from those associated with surgery. In addition, anaesthetists often perform interventions that are the only medical treatment received by a patient. Anaesthetists, therefore, should always (...) obtain separate consent for anaesthesia, and should regard the process of consent as a stimulus for active, fluid reciprocal discussion with patients about treatment options. (shrink)

In healthcare ethics there is a discussion regarding whether autonomy of personal preferences, what sometimes is referred to as authenticity, is necessary for autonomous decision-making. It has been argued that patients’ decisions that lack sufficient authenticity could be deemed as non-autonomous and be justifiably overruled by healthcare staff. The present paper discusses this issue in relation certain psychiatric disorders. It takes its starting point in recent qualitative studies of the experiences and thoughts of patients’ with anorexia nervosa where issues related (...) to authenticity seem particularly relevant. The paper examines different interpretations of authenticity relevant for autonomy and concludes that the concept, as it has been elaborated in recent debate, is highly problematic to use as a criterion for autonomous decision-making in healthcare. (shrink)

Decision-making capacity is a key concept in contemporary healthcare ethics. Previous research has mainly focused on philosophical, conceptual issues or on evaluation of different tools for assessing patients’ capacity. The aim of the present study is to investigate how the concept and its normative role are understood in Swedish psychiatric care. Of special interest for present purposes are the relationships between decisional capacity and psychiatric disorders and between health law and practical ethics.

This paper will discuss why and how social network sites ought to be used in surrogate decision making (SDM), with focus on a context like Singapore in which substituted judgment is incorporated as part of best interest assessment for SDM, as guided by the Code of Practice for making decisions for those lacking mental capacity under the Mental Capacity Act (2008). Specifically, the paper will argue that the Code of Practice already supports an ethical obligation, as part of a patient-centred (...) care approach, to look for and appraise social network site (SNS) as a source of information for best interest decision making. As an important preliminary, the paper will draw on Berg’s arguments to support the use of SNS information as a resource for SDM. It will also supplement her account for how SNS information ought to be weighed against or considered alongside other evidence of patient preference or wishes, such as advance directives and anecdotal accounts by relatives. (shrink)

In her recent book, L. A. Paul presses a serious problem for normative decision theory. Normative decision theory seems to be inapplicable when the values of potential outcomes are unknown, or when our preferences may change as a result of our choice. Paul then offers a framework for overcoming these problems, known as therevelation approach. I argue that, contrary to what Paul suggests, this approach is unhelpful in the large class of cases where the decision at hand centrally concerns persons (...) other than the decision-maker. Unless Paul’s account is supplemented in order to handle such cases, many decisions will remain rationally intractable. (shrink)

People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes ‘good’ proxy decision-making for research has remained unexplored. Interventions are needed to (...) improve and support proxy decision-making for research but are hampered by a lack of understanding about what constitutes decision quality in this context. A global increase in conditions associated with cognitive impairment such as dementia has led to an urgent need for more research into these conditions. The COVID-19 pandemic and subsequent necessity to conduct research with large numbers of critically ill patients has made this need even more pressing. Much of the empirical research centres on the desire to improve decision accuracy, despite growing evidence that authenticity is more reflective of the aim of proxy decisions and concerns about the methodological flaws in authenticity-focused studies. Such studies also fail to take account of the impact of decision-making on proxies, or the considerable body of research on improving the quality of healthcare decisions. This paper reports a concept synthesis of the literature that was conducted to develop the first conceptualisation of ‘good’ proxy decisions about research participation. Elements of decision quality were identified across three stages of decision-making: proxy preparedness for decision-making which includes knowledge and understanding, and values clarification and preference elicitation; the role of uncertainty, decisional conflict, satisfaction and regret in the decision-making process; and preference linked outcomes and their effect. This conceptualisation provides an essential first step towards the future development of interventions to enhance the quality of proxy decision-making and ensure proxy decisions represent patients’ values and preferences. (shrink)

Patient preference predictors (PPPs) promise to provide medical professionals with a new solution to the problem of making treatment decisions on behalf of incapacitated patients. I show that the use of PPPs faces a version of a normative problem familiar from legal scholarship: the problem of naked statistical evidence. I sketch two sorts of possible reply, vindicating and debunking, and suggest that our reply to the problem in the one domain ought to mirror our reply in the other. The conclusion (...) is thus conditional: if we think the problem of naked statistical evidence is a serious problem in the legal domain, then we should be concerned about the symmetrical problem for PPPs. (shrink)

Decision-making Capacity matters to whether a patient’s decision should determine her treatment. But why it matters in this way isn’t clear. The standard story is that dmc matters because autonomy matters. And this is thought to justify dmc as a gatekeeper for autonomy – whereby autonomy concerns arise if but only if a patient has dmc. But appeals to autonomy invoke two distinct concerns: concern for authenticity – concern that a choice is consistent with an individual’s commitments; and concern for (...) sovereignty – concern that an individual exercises control over that which is hers to control. Here, I argue, neither concern can alone explain why dmc matters. Instead, dmc matters because it indicates a harmony between the two concerns – the demands of each concern are more likely to agree if a patient has dmc. This vindicates the standard story, but also makes clear that dmc is an inappropriate gatekeeper for autonomy. (shrink)

According to what we propose to call “the competence model,” competence is a necessary condition for valid informed consent. If a person is not competent to make a treatment decision, the decision must be made by a substitute decision-maker on her behalf. Recent reports of various United Nations human rights bodies claim that article 12 of the Convention on the Rights of Persons with Disabilities involves a wholesale rejection of this model, regardless of whether the model is based on a (...) status, outcome, or functional approach to competence. The alleged rationale of this rejection is that denying persons the right to make their own treatment decisions based on an assessment of competence necessarily discriminates against persons with mental disorders. Based on a philosophical account of the nature of discrimination, we argue that a version of the competence model that combines supported decision-making with a functional approach to competence does not discriminate against persons with mental disorders. Furthermore, we argue that status- and outcome-based versions of the competence model are discriminatory. (shrink)

It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the Rights of (...) Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. (shrink)

Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: (...) the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion—indeed, a full reimagining—of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally. (shrink)

In “Acquiescence is Not Agreement,” Caruso Brown (2022) offers a comprehensive framework for identifying and empowering marginalized voices in pediatric decision-making. She does so through both a...

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)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

Allen Buchanan and Daniel Brock, in a widely influential account, Deciding for Others (1990), advocate a sliding scale approach to the determination of whether a patient is competent to make a decision regarding his/her health care. An analysis of two critiques of their position (Beauchamp and Childress (1994), Wicclair (1991 a,b)) reveals a tacit presumption by all of these authors that the greater cognitive challenge often posed by high risk therapies constitutes grounds for an elevated standard of competence. This presumption (...) cannot be consistently maintained in cases where the patient's decision involves experimental therapies. It implies either that informed consent can never take place in such situations, or, perhaps even more counter-intuitively, that a lower standard of competency should be used than when the patient is asked to choose only among standard therapies. (shrink)

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

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)

The Case of Archie Battersbee in the United Kingdom (UK) is a tragic one: a 12-year-old otherwise healthy boy who suffered a cardiac arrest at home on April 7, 2022, and was subsequently diagnosed...

As medical technology continues to improve, more people will live longer lives with multiple chronic illnesses with increasing cumulative debilitation, including cognitive dysfunction. Combined with the aging of society in most developed countries, an ever-growing number of patients will require surrogate decision-makers. While advance care planning by patients still capable of expressing their preferences about medical interventions and end-of-life care can improve the quality and accuracy of surrogate decisions, this is often not the case, not infrequently leading to demands for (...) ineffective, inappropriate and prolonged interventions. In 1980 LaFollette called for the licensing of prospective parents, basing his argument on the harm they can do to vulnerable people. In this paper, I apply his arguments to surrogate decision-makers for cognitively incapacitated patients, rhetorically suggesting that we require potential surrogates to qualify for this position by demonstrating their ability to make reasonable and rational decisions for others. I employ this theoretical approach to argue that the loose criteria by which we authorize surrogates’ generally unchallenged power should be reconsidered. (shrink)