The purpose of this article is threefold: (a) to describe the relevant ethical and legal issues associated with decisional capacity among minors and to discuss the importance of these concepts for children and adolescents living with HIV, (b) to provide a framework for assessing the decisional capacity of children and adolescents with HIV, and (c) to present a model for thinking about how to use this assessment data to guide action along the protection-autonomy continuum.

Addiction of the variety discussed in this chapter, is a condition that by its very nature compromises decision-making capacity across the decisional spectrum. The impairment is present not only at moments of withdrawal and intoxication, but at all stages of the active addictive cycle, as long as the pathological dispositions to overvalue addictive drugs remain entrenched and operative. In light of this entrenched and pervasive reorientation in pathological values, it seems reasonable to question the unilateral presumption of (...) class='Hi'>capacity for cases of this sort. The reason is that there is an important, but restricted, sense in which the addicted individuals in question are not ‘responsible’ for their decisions regarding drug use. The high likelihood of relapse means that, as a clinical matter of fact, they are usually not accountable. At the same time, clinical experience also suggests that we should treat addicted individuals as if they are responsible because that empowerment is crucial to their recovery. In the end, there is probably only one safe course of action to take when faced with such a difficult situation. This is to suspend the unilateral global presumption of capacity and instead assess decision-making capacity on a case-by-case basis, with careful monitoring and encouragement. (shrink)

In this article I note two ways in which current assessments of patients’ decisional capacity rest on disputable philosophical assumptions. The first disputable assumption concerns the nature of practical reason; the second concerns patients’ articulation of their preferences. I do not argue that clinical practice should be changed. Still, relying on disputable philosophical assumptions can distort the description of such practice. It would be good for philosophers and philosophically oriented clinicians to work with a philosophically accurate account of (...) clinical practice. Moreover, every so often more accurate description might make for better practice. (shrink)

The model for capacity assessment in the United States and much of the Western world relies upon the demonstration of four skills including the ability to communicate a clear, consistent choice. Yet such assessments often occur at only one moment in time, which may result in the patient expressing a choice to the evaluator that is highly inconsistent with the patient’s underlying values and goals, especially if a short-term factor (such as frustration with the hospital staff) distorts the patient’s (...) preferences momentarily. These challenges are particularly concerning in cases, which arise frequently in hospital settings, in which patients demand immediate self-discharge, often during off-hours, while faced with life-threatening risks. This paper examines the distinctive elements that shape such cases and explores their ethical implications, ultimately offering a model for such situations that can be operationalized. (shrink)

Philosophy has much to offer psychiatry, not least regarding ethical issues, but also issues regarding the mind, identity, values, and volition. This has become only more important as we have witnessed the growth and power of the pharmaceutical industry, accompanied by developments in the neurosciences.

Despite substantial research on overall decision-making capacity levels in schizophrenia, the factors that cause individuals to make errors when making decisions regarding research participation or treatment are relatively unknown. We examined the responses of 84 individuals, middle-aged or older, with schizophrenia or schizoaffective disorder. We used a structured decision-making capacity measure, the MacArthur Competence Assessment Tool for Clinical Research, to determine the frequency and apparent cause of participants’ errors. We found that most errors were due to difficulty recalling (...) the disclosed information, particularly the study’s procedures, potential risks, and purpose. Errors attributable to concrete thinking, psychotic symptoms, or perceived coercion were rarer. These results suggest that informed consent procedures for this population might be improved by providing information in a way that facilitates learning and memory, such as iterative disclosure of the information, corrective feedback, and emphasis of key points of the study—for instance, its purpose, procedures, and potential risks. (shrink)

In this Introduction, I situate the underlying project “Autonomy and Mental Disorder” with reference to current debates on autonomy in moral and political philosophy, and the philosophy of action. I then offer an overview of the individual contributions. More specifically, I begin by identifying three points of convergence in the debates at issue, stating that autonomy is: 1) a fundamentally liberal concept; 2) an agency concept and; 3) incompatible with (severe) mental disorder. Next, I explore, in the context of (...) class='Hi'>decisional capacity assessments, the difficulties to reconcile 1) and 2) with 3) which they at the same time seem to imply. Having clarified the centrality of a cogent notion of mental disorder for addressing these difficulties, I comment on three promising lines of inquiry about the nature and scope of autonomy that emerge from the following chapters. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Appreciating Anorexia:Decisional Capacity and the Role of ValuesThomas Grisso (bio) and Paul S. Appelbaum (bio)Keywordscompetence, consent, anorexia, appreciation, decision makingTan and her colleagues (2006) reported that persons with anorexia nervosa typically manifest no difficulty satisfying the criteria for abilities associated with competence to consent to or refuse treatment. Their results led them to conclude that these patients generally had no problem grasping the nature of anorexia and (...) its possible consequences (understanding), typically did not have difficulty processing information when making treatment decisions (reasoning), and usually neither denied that they had a disorder nor manifested distorted beliefs about the potential consequences of treatment for the disorder.Nevertheless, these authors found, some anorexia patients said that they knew they might die and that they would rather die than suffer the alternative consequences (e.g., loss of identity, feeling of being disgusting). They point out that these beliefs, suggesting questionable competence, were not identified by the usual criteria for competence to consent to treatment. Therefore, they propose that we should consider a modification of the criteria for competence to consent to treatment. They argue for inclusion of "pathological values" as the basis for a finding of incompetence. Their notion of a pathological value (as we summarize it based on their Discussion) includes (a) a personal value (b) on which treatment refusal is based, that (c) is not authentic, and (d) is due to a mental disorder.Second, Tan and colleagues were concerned that the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), currently used widely to assess competence to consent to treatment, did not seem to take values into account when examining deficits related to lack of appreciation or reasoning. They point out that most patients with anorexia nervosa in their study had "pathological values" that influenced their thinking about treatment, yet they did not obtain poor scores on the instrument's appreciation scale, which assesses whether patients deny that they have the illness or offer reasons for accepting or refusing treatment that are based on delusional premises or a serious distortion of reality. Moreover, almost all of the anorexia patients in the study obtained adequate scores on reasoning, which examines the ability to process options and consequences when weighing a treatment decision. [End Page 293]Reasons for Caution in Altering Criteria for CompetenceA fundamental step in considering Tan and her co-worker's proposal is to examine whether it is necessary to add a concept of "pathological values" to the legal construct of competence to consent to treatment. Modifying the legal doctrine of consent is important if that is needed to improve its validity or reliability. But modifications of the doctrine would have considerable costs, including a long process of producing logical and empirical evidence for its necessity, developing methods to assess the new concept, and then a process of debate, persuasion, and education to change laws, ethical guidelines, and medical training. Moreover, principles of theory building urge parsimony. A theory should employ no more concepts or assumptions than are required to account for the phenomena that the theory seeks to organize or explain. So one must be sure that modifications are truly necessary before adding complexity to the theory of decisional competence.In addition, there is an inherent danger in altering a concept like competence to consent to treatment on the basis of the study of any one mental disorder. It is not at all clear how the modification might influence findings of competence when applied to other disorders. Using a study of patients with anorexia nervosa as the impetus for changing the competence concept runs this risk. For example, anorexia is one of a class of mental disorders that is characterized by a failure to abstain from behavior (here, limiting food intake and other behaviors designed to reduce weight) that has negative consequences for the person. Other conditions in this category might include substance abuse disorders and impulse control disorders (e.g., pathological gambling). Even if one concludes that revised criteria for competence would reduce false-positive findings of competence in this group of disorders, one would have to consider carefully its impact on the full range of disabling mental conditions.Moreover, the sensitivity... (shrink)

Informed consent represents a specific protocol for obtaining consent from a fully informed human subject to take part in clinical research. Still, informed consent is not only required for clinical trials but it also represents a critical precondition before enrolment in standard everyday medical procedures. Relevant fundamental criteria for obtaining informed consent must be followed, and that is that patient must have the decisional capacity to reach autonomous decision. The patient must be adequately informed and not coerced. Evaluating (...) decisional capacity is crucial to providing the required level of care. The decision of which decisional capacity tool to use can be challenging because of various dissimilarities among the instruments. In this paper, four widely documented instruments have been evaluated, namely, the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), the Hopkins Competency Assessment Test (HCAT), the Structured Interview for Competency/Incompetency Assessment Testing, Ranking Inventory (SICIATRI), and the Capacity Assessment Tool (CAT). Some of them include a fully structured interview; semi-structured forms characterise others. Most of them are adaptable for different scenarios, and yet, some are tailored for specific treatment decisions. Some evaluate all four components of decisional capacity, while others do not. Although a broad range of capacity assessment tools is available, it has been shown that they notably improve the accuracy of capacity evaluations. Given that many pathological conditions could result in impaired decisional capacity, physicians must be able to correctly and consistently assess the capacity for which education and previous experience are pivotal. (shrink)

Limits to paternalism are, in the liberal democracies, partially defined by the concepts of decision-making capacity/incapacity (mental competence/incompetence). The paper is a response to Ian Wilkss (1997) recent attempt to defend the idea that the standards for decisional capacity ought to vary with the degree of risk incurred by certain choices. Wilkss defense is based on a direct appeal to the logical features of examples and analogies, thus attempting to by-pass earlier criticisms (e.g., Culver Gert, 1990) of (...) risk-based standards. Wilkss argument is found wanting on the grounds that he misconstrues the logic of such capacity, especially in accounting for conceptual and pragmatic ties with issues of decisional authority. A diagnosis is offered as to the source of Wilkss error (the assumption that mental competence is a species of wider genus of competence), and an alternative way of accounting for risk within the predominant contemporary legal framework is sketched. (shrink)

In “Conscientious of the Conscious: Interactive Capacity as a Threshold Marker for Consciousness” (2013), Fischer and Truog argue that recent studies showing that some patients diagnosed as being in a vegetative state are in fact in a minimally conscious state raise various ethical questions for clinicians and family members. I argue that these findings raise a further ethical dilemma about how and whether to seek the involvement of the minimally conscious person herself in decisions about her care. There may (...) be a conflict between doing what is believed to accord with the patient’s prior stated wishes and/or her best interests, on the one hand, and respecting her own potential decision-making capacity and epistemic authority, on the other. (shrink)

Many state laws specify procedures for determining surrogate or proxy decision-makers for end-of-life care in the absence of an advance directive, living will, or other designation. Some laws also set forth criteria that the decision-maker must follow when making medical decisions for an incapacitated patient and determining whether to withdraw life-sustaining treatment. This article provides analysis of a medical ethics case on the question of how to address family allegations that the proxy decision-maker suffers from dementia and is unable to (...) make decisions for the patient. Cases such as this involve interwoven legal and ethical considerations including: how to address concerns that the proxy is making questionable or unreasonable decisions, how to evaluate the proxy's decisional capacity, strategies for enhancing communication, and standards for removing a proxy. This article suggests that “surrogacy ladders” in state law serve not only as a procedural mechanism, but also protect important ethical values such as tiers of moral authority for decision-making, relational autonomy, and privacy. (shrink)

In their article, Navin, Brummett, and Wasserman (2022) advance the idea that there are qualitatively different types of decision-making capacity (DMC) for treatment refusals. Departing from what t...

The capacity to designate a surrogate is not simply another kind of medical decision-making capacity. A patient with DMC can express a preference, understand information relevant to that choice, appreciate the significance of that information for their clinical condition, and reason about their choice in light of their goals and values. In contrast, a patient can possess the CDS even if they cannot appreciate their condition or reason about the relative risks and benefits of their options. Patients who (...) lack DMC for many or most kinds of medical choices may nonetheless possess the CDS, particularly since the complex means-ends reasoning required by DMC is one of the first capacities to be lost in progressive cognitive diseases. That is, patients with significant cognitive decline or mental illness may still understand what a surrogate does, express a preference about a potential surrogate, and be able to provide some kind of justification for that selection. Moreover, there are many legitimate and relevant rationales for surrogate selection that are inconsistent with the reasoning criterion of DMC. Unfortunately, many patients are prevented from designating a surrogate if they are judged to lack DMC. When such patients possess the CDS, this practice is ethically wrong, legally dubious and imposes avoidable burdens on healthcare institutions. (shrink)

Decisional capacity evaluations (DCEs) occur in clinical settings where it is unclear whether a consumer of medical services has the capacity to make an informed decision about the relevant medical options. DCEs are localized interventions, not the global loss of competence, that assign a surrogate decision maker to make the decision on behalf of the medical consumer. We maintain that one important necessary condition for a DCE to be morally justified, in cases of medical necessity, is that (...) the health care consumer under evaluation is incapable of expressing a preference for a certain outcome. (shrink)

It is a common assumption that lack of autonomy is incompatible with decisional capacity and mental health. However, there are two general conceptions of autonomy, one value-neutral and the other value-laden, which imply different notions of mental health. I argue that the value-neutral notion of autonomy is independently inadequate and that it also provides an inadequate foundation for judging whether someone is decisionally incapable or mentally disordered. I propose an alternative, value-laden account which posits ten capabilities required for (...) basic human functioning. I then defend this account against objections and highlight its practical utility in designing optimal treatment. (shrink)

BackgroundHealthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity.MethodsWe conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other (...) correlates of attitudes, including support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death.ResultsSupport for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics.ConclusionsFindings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered. (shrink)

The most widely accepted model of decisional capacity assessment requires that a patient communicate a clear and consistent choice to the evaluator. This approach works effectively when patients prove unable to express a choice owing to physical, psychological, or cognitive limitations. In contrast, the approach raises ethics concerns when applied to patients who volitionally refuse to communicate a choice. This article examines the ethical issues that arise in such cases and offers a rubric for addressing decisional (...) class='Hi'>capacity under such circumstances. (shrink)

Are women's requests for aid in dying honored more often than men's, or less? Feminist arguments can support conclusions either that gendered perceptions of women as self‐sacrificing predispose physicians to accede to women's requests to die — or that cultural understandings of women as not fully rational agents lead physicians to reject their requests as irrational.

Liberal societies are built on a foundation of personal rights, including the right to make decisions about the medical treatment that one will receive or decline to receive. So essential to the liberal project is the power of individual choice that it will be abrogated only in the most extreme situations, in which persons seem to be unable to make rational decisions and thereby to protect their interests. A small number of decision-related abilities have been identified as relevant to the (...) determination of when a person will be deemed decisionally incapable: understanding, appreciation, reasoning, and choice. It would seem prudent to tinker with these standards cautiously—if at all.... (shrink)

With the waves of reform occurring in mental health legislation in England and other jurisdictions, mental capacity is set to become a key medico-legal concept. The concept is central to the law of informed consent and is closely aligned to the philosophical concept of autonomy. It is also closely related to mental disorder. This paper explores the interdisciplinary terrain where mental capacity is located. Our aim is to identify core dilemmas and to suggest pathways for future interdisciplinary research. (...) The terrain can be separated into three types of discussion: philosophical, legal and psychiatric. Each discussion approaches mental capacity and judgmental autonomy from a different perspective yet each discussion struggles over two key dilemmas: whether mental capacity and autonomy is/should be a moral or a psychological notion and whether rationality is the key constitutive factor. We suggest that further theoretical work will have to be interdisciplinary and that this work offers an opportunity for the law to enrich its interpretation of mental capacity, for psychiatry to clarify the normative elements latent in its concepts and for philosophy to advance understanding of autonomy through the study of decisional dysfunction. The new pressures on medical and legal practice to be more explicit about mental capacity make this work a priority. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ought We to Require Emotional Capacity as Part of Decisional Competence?Paul S. Appelbaum* (bio)AbstractThe preceding commentary by Louis Charland suggests that traditional cognitive views of decision-making competence err in not taking into account patients’ emotional capacities. Examined closely, however, Charland’s argument fails to escape the cognitive bias that he condemns. However, there may be stronger arguments for broadening the focus of competence assessment to include emotional capacities, (...) centering on the ways in which emotions aid humans in processing information. Before emotional capacities are added to the list of functions essential for decisional competence, though, the feasibility and utility of such a reorientation must be demonstrated.To what extent ought persons’ capacities to experience emotion be taken into account when determining whether they should be deemed competent to make their own decisions? In the previous article, Louis Charland (1998) argues that traditional models of decision-making competence—of which the MacArthur Competence Treatment Study is a typical example—are mistaken in focusing narrowly on persons’ cognitive abilities to the neglect of emotional factors. In contrast, he suggests, constructs of competence ought explicitly to require a capacity to experience emotions, which he believes is central to meaningful decision making, before deeming persons competent.Charland, as he acknowledges, is not the first to suggest that the presence of some degree of emotional capacity is a necessary element of competence, but his argument is among the most elaborate to date and is certainly worth closer examination. Looked at carefully, however, Charland’s argument does not make quite the case for the determination of emotional capacity in competence assessment that he claims for it. Indeed, as I demonstrate below, Charland may share the same “pernicious [End Page 377] cognitive bias” that he ascribes to more traditional approaches. However, despite what I identify as the problems in Charland’s argument, others have raised more disturbing questions about the lack of attention to emotional issues in competence assessment. Thus, I am not ready to reject entirely the possibility that determinations of decisional competence ought to consider emotional factors. I conclude by outlining the questions that remain to be answered to identify more clearly the potential benefits of such an approach.The Construct of Decision-Making CompetenceSome preliminary comments about the nature of the dominant construct of decision-making competence may provide a useful frame for my response to Charland’s paper. Contemporary ideas of competence are tied inextricably to the ideal of self-determination in modern Western societies. Such societies are committed to respect for individual choice, both as a good in its own right and on the grounds that each person knows best what choices will maximize his or her own welfare. In general, therefore, states will not intervene to prevent persons from acting on their decisions, even when the choices they make—like the decision to smoke or to refuse potentially life-saving medical care—may objectively be thought to be detrimental to them.In some cases, however, the presumption that people will act in their own interests, as well as the notion that there is something intrinsically valuable in respecting their choices, fails (Buchanan and Brock 1989). When people’s minds are so disordered that they cannot be said to be making meaningful choices, other values come into play. Such people are called “incompetent.” When persons reach that point, the state’s interest in protecting its citizens becomes primary and someone else must make decisions on their behalf. Note that the size of this group must be sharply limited, lest a liberal society’s commitment to self-determination be undermined: There is no more profound infringement of the rights of citizens than the determination that they are incompetent. Thus, the criteria for incompetence must be selected in a deliberately narrow fashion—alternately, one might say that the standards for competence are made intentionally broad—so that all but a tiny percentage of citizens will be permitted to make decisions on their own.In the Anglo-American world, the process of formulating criteria of competence by and large has been left to the common law courts. Over the course of centuries they have identified the capacities that are, in... (shrink)

Decision-Making Capacity First published Tue Jan 15, 2008; substantive revision Fri Aug 14, 2020 In many Western jurisdictions the law presumes that adult persons, and sometimes children that meet certain criteria, are capable of making their own medical decisions; for example, consenting to a particular medical treatment, or consenting to participate in a research trial. But what exactly does it mean to say that a subject has or lacks the requisite capacity to decide? This question has to do (...) with what is commonly called “decisional capacity”, a central concept in health care law and ethics, and increasingly an independent topic of philosophical inquiry. -/- Decisional capacity can be defined as the ability of subjects to make their own medical decisions. Somewhat similar questions of capacity arise in other contexts, such as capacity to stand trial in a court of law and the ability to make decisions that relate to personal care and finances. However, the history behind the more general legal notions of capacity to stand trial and capacity to manage one’s life is different and operates somewhat differently in law (Roth, Meisel, & Litz 1977; Zapf & Roesch 2005). For the purposes of this discussion the notion of decisional capacity will be limited to medical contexts only; most notably, those where decisions to consent or to refuse treatment or participation in clinical research are concerned. (shrink)

Capacity evaluation has become a widely used assessment device in clinical practice to determine whether patients have the cognitive ability to render their own medical decisions. Such evaluations, which might be better thought of as “capacity challenges,” are generally thought of as benign tools used to facilitate care. This paper proposes that such challenges should be reconceptualized as significant medical interventions with their own set of risks, side effects, and potentially deleterious consequences. As a result, a cost–benefit analysis (...) should be implemented prior to imposing such capacity challenges, and efforts should be made to minimize such challenges in situations where they are unlikely to alter the course of treatment. (shrink)

Much attention has been given to determining whether an adolescent patient has the capacity to consent to research. This study explores the factors that influence adolescents' decisions to participate in a research study about youth violence and to determine positive or negative feelings elicited by being a research subject. The majority of subjects perceived their decision to participate to be free of coercion, and few felt badly about having participated. However, adolescents who were alone in the room during the (...) assent process were more likely to report that they chose freely to be a research subject. This study may influence the ways physicians communicate with adolescent patients around research assent within a clinical care environment. 1This article was presented at the Annual Meetings of The Pediatric Academic Societies in Baltimore, MD and The Society for Academic Emergency Medicine in Atlanta, GA in May, 2001. (shrink)

In this issue of the Hastings Center Report, Jason Wasserman and Mark Navin argue that patients without decisional capacity can still have relatively stable wishes or inclinations toward one treatment option over another and that these preferences are “not devoid of moral weight and might therefore guide or at least influence treatment decisions when they cannot be defeated by other considerations.” This position is not controversial among most bioethicists. The hard work comes in sussing out the details of (...) this position. How much moral weight do these preferences have? When should preferences be defeated by other considerations? How should we identify actual preferences, and how should preferences be differentiated and weighed against one another? (shrink)

It is usually appropriate for adults to make significant decisions, such as about what kinds of medical treatment to undergo, for themselves. But sometimes impairments are suffered - either temporary or permanent - which render an individual unable to make such decisions. The Mental Capacity Act 2005 sets out the conditions under which it is appropriate to regard an individual as lacking the capacity to make a particular decision (and when provisions should be made for a decision on (...) their behalf). -/- To what extent does having capacity require the endorsement of certain values? Drawing on Owens et al (2009), I assess the extent to which understanding relevant information and weighing it in coming to a decision requires certain evaluative commitments. With reference to literature on anorexia nervosa and decisions informed by religious beliefs, I argue that it is difficult to avoid the conclusion that the conditions for capacity are value-laden, and that if this is so it is important to open discussion about which patterns of distorted valuing undermine capacity, and why. (shrink)

In many Western jurisdictions, the law presumes that adult persons, and sometimes children that meet certain criteria, are capable of making their own health care decisions; for example, consenting to a particular medical treatment, or consenting to participate in a research trial. But what exactly does it mean to say that a subject has or lacks the requisite capacity to decide? This last question has to do with what is commonly called “decisional capacity,” a central concept in (...) health care law and ethics, and increasingly an independent topic of philosophical inquiry. (shrink)

Decision-making capacity (DMC) plays an important role in clinical practice—determining, on the basis of a patient’s decisional abilities, whether they are entitled to make their own medical decisions or whether a surrogate must be secured to participate in decisions on their behalf. As a result, it’s critical that we get things right—that our conceptual framework be well-suited to the task of helping practitioners systematically sort through the relevant ethical considerations in a way that reliably and transparently delivers correct (...) verdicts about who should and should not have the authority to make their own medical decisions. Unfortunately, however, the standard approach to DMC does not get things right. It is of virtually no help in identifying and clarifying the relevant ethical considerations. And, embedded in the prevailing anti-paternalist paradigm, DMC assessments obfuscate and distort the underlying ethical justification for granting or withholding decisional authority. Here, we describe the core commitments of the standard approach to DMC and then highlight three problems with it. We then argue that these problems are significant enough that they call for more than merely tinkering and fine tuning—variations of the standard approach cannot adequately address them. Instead, we should ditch DMC. (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.

BackgroundMany of the important elements of a valid informed consent – comprehension, voluntariness, and capacity – can be compromised or unmet in the context of psychiatric research. The inability to protect their own interests puts mentally ill subjects at an increased likelihood of being wronged or harmed and makes them particularly vulnerable in the context of clinical research. Therefore, they are due extra protection. Sometimes, these additional safeguards can significantly limit the possibilities for research involving subjects deemed unable to (...) consent due to their mental illness. Montenegro, a middle-income country in Southern-Eastern Europe, goes so far in their policy to protect these subjects from harms of research, as to ban all biomedical research on mentally ill persons who are unable to provide consent.Main bodyMental health research is often neglected and very low on the list of health research priorities, especially in low- and middle-income countries. Despite the fact that mental health disorders are among leading causes of disability, the need for evidence-based services and interventions for those affected remains unmet.To exclude all members of a certain group of subjects seems extremely restrictive and unnecessary. Such a policy is discriminatory and unethical, because it inflicts further harms and exclusion of those patients from participation in society. This unjust exclusion policy obstructs research of certain psychiatric disorders and implies that new treatments for conditions that directly affect these incapacitated subjects will not be developed.ConclusionsScientific and clinical development must not be precluded by overly restrictive, discriminatory and unjust practices, such as the normative ban on research on decisionally-impaired mentally ill subjects. Rather, there should be a regulative framework that ensures that those who cannot consent for themselves are respected and protected in research, the anticipated benefits maximized, risks minimized, their autonomy recognized and extended. These patient-subjects must be appropriately included unless there is a clear and compelling rationale and justification that inclusion is inappropriate with respect to the health of the participants or the purpose of the research. (shrink)

BackgroundInformed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research.Methods53 subjects with DSM-5 diagnoses of a Substance Use Disorder and 50 non psychiatric comparison subjects participated in the survey from December 2014 to March 2015. This cross-sectional study was (...) carried out at a community-based Outpatient Treatment Center and at an urban-located Health Centre in Spain. A binary judgment of capacity/incapacity was made guided by the MacArthur Competence Assessment Tool for Clinical Research and a clinical interview. Demographics and clinical characteristics were assessed by cases notes and the Mini-Mental State Examination, the Global Assessment Functional Scale and the Clinical Global Impression Scale.ResultsNPCs performed the best on the MacCAT–CR, and patients with SUD had the worst performance, particularly on the Understanding and Appreciation subscales. 32.7 % SUD people lacked research-related decisional capacity. There were no statistically significant differences between the groups in terms of capacity to consent to research.ConclusionsThe findings of our study provide evidence that a large proportion of individuals with SUD had decisional capacity for consent to research. It is therefore inappropriate to draw conclusions about capacity to make research decisions on the basis of a SUD diagnosis. In the absence of advanced cognitive impairment, acute withdrawal or intoxication, we should assume that addicted persons possess decision-making capacity. Thus, the view that people with SUD would ipso facto lose decision-making power for research consent is flawed and stigmatizing. (shrink)

In order to be exercised meaningfully, political freedom requires the capacity to actually identify available policy options. To ensure this, society ought to engage in deliberation as a discussion oriented towards mutual learning. In order to highlight this issue, I define deliberation in terms of the participants’ openness to preference change, i.e. the deliberative stance. In the context of the systemic approach to deliberative theory, I find several factors causing the atrophy of such a deliberative stance. I note that (...) this state can occur not only when debaters are representatives or are in the presence of an audience, but also when they face the prospect of a binding decision. It is the latter effect that is a serious challenge to the micro-deliberative strategy, one that strives towards decisional powers being granted to deliberative minipublics. Presenting my findings, I propose—as an alternative to the power-oriented ‘ladder of participation’—a distinction between traditional co-decision and deliberative consultation, the latter one being an environment that is more conducive to deliberative stance. This new typology highlights factors that lead to preference petrification and allows for the appreciation of the non-decisional character of micro-deliberation. All of it leads to the conclusion that, in order to preserve their deliberative character in the systemic context, deliberative minipublics should not always be required to have decision-making powers. (shrink)

Inherent in providing healthcare for youth lie tensions among best interests, decision-making capacity, rights, and legal authority. Transgender youth experience barriers to needed gender-affirming care, often rooted in ethical and legal issues, such as healthcare provider concerns regarding youth capacity and rights to consent to hormone therapy. Even when decision-making capacity is present, youth may lack the legal authority to give consent. The aims of this paper are therefore to provide an empirical analysis of minor trans youth (...) capacity to consent to hormone therapy and to address the normative question of whether there is ethical justification for granting trans youth the authority to consent to this care. Through qualitative content analysis of interviews with trans youth, parents, and healthcare providers, we found that trans youth demonstrated the understandings and abilities characteristic of the capacity to consent to hormone therapy and that they did consent to hormone therapy with positive outcomes. Employing deontological and consequentialist reasoning and drawing on a foundation of empirical evidence, human rights, and best interests we conclude that granting trans youth with decisional capacity both the right and the legal authority to consent to hormone therapy via the informed consent model of care is ethically justified. (shrink)

The debate over risk-related standards of decisional capacity remains one of the most important and unresolved challenges to our understanding of the demands of informed consent. On one hand, risk-related standards benefit from significant intuitive support. On the other hand, risk-related standards appear to be committed to asymmetrical capacity—a conceptual incoherence. This latter objection can be avoided by holding that risk-related standards are the result of evidential considerations introduced by (i) the reasonable person standard and (ii) the (...) standing assumption that patients have capacity. This evidential approach to justifying risk-related standards of capacity avoids the most significant challenges faced by extant views while grounding risk-related standards in two fairly uncontroversial views in biomedical ethics. (shrink)

Here we describe how more important findings were obtained in a delirium study by using an informal assessment of mental capacity, and, in those who lacked capacity, obtaining consent later when or if capacity returned or a proxy was found. From a total of 233 patients 23 patients lacked capacity as judged by our informal capacity judgment and 210 did not. Of those who lacked capacity, 13 agreed to enter in the study. Six of (...) them regained capacity later. When these 13 participants were excluded from analysis, significant findings were no longer evident. These results show that by the inclusion of subjects who lacked capacity the results of analyses of the condition from whish they suffer are altered. We suggest that this approach to the study of delirium is more ethical than the usual system of strict exclusion of people who lack capacity to give consent and for whom assent is not available. (shrink)

Reports of children participating in hunger strikes while detained in offshore detention centres raise interrelated ethical issues and recognizable challenges for the medical decision-makers at these sites. A composite case study, informed by reports in the public domain, is employed to explore the unique challenges of consent and decision-making in these circumstances and the perennial issues inherent in adolescents’ developing capacity and autonomy. We present an amalgamated case of a fourteen-year-old adolescent who refused to consent to medical reversal of (...) her hunger strike protest. The medical team became the final arbiter when her parents, who were also in detention, could not agree with each other even after mediation. The case explores the complexity of evaluating the adolescent’s capacity to provide informed consent while influenced by the opinions of co-detainees in this extreme setting. We argue that the parents and the child had compromised decisional capacity due to the effects of detention. The challenges to the medical team are recognized and discussed. The team members faced a difficult dilemma and considered the competing values of the multiple cultural and ethical factors. Each team member integrated his or her own roles, duties, and discipline-specific professional guidelines with the primary goal of mitigating potential harms. (shrink)

In “Revive and Refuse: Capacity, Autonomy, and Refusal of Care After Opioid Overdose”, Marshall, Derse, Weiner, and Joseph contend that patients who may appear to satisfy the standard criteria for...

This article draws upon the civic republican tradition to offer new conceptual resources for the normative assessment of mental capacity law. The republican conception of liberty as non-domination is used to identify ways in which such laws generate arbitrary power that can underpin relationships of servility and insecurity. It also shows how non-domination provides a basis for critiquing legal tests of decision-making that rely upon ‘diagnostic’ rather than ‘functional’ criteria. In response, two main civic republican strategies are recommended for (...) securing freedom in the context of the legal regulation of psychological disability: self-authorisation techniques and participatory shaping of power. The result is a series of proposals for the reform of decisional capacity law, including a transition towards purely functional assessment of decisional capacity, surer legal footing for advanced care planning, and greater control over the design and administration of decision-making capacity laws by those with psychological disabilities. (shrink)

A ‘Ulysses arrangement’ (UA) is an agreement where a patient may arrange for psychiatric treatment or non-treatment to occur at a later stage when she expects to change her mind. In this article, I focus on ‘competence-insensitive’ UAs, which raise the question of the permissibility of overriding the patient’s subsequent decisionally competent change of mind on the authority of the patient’s own prior agreement. In “The Ethical Justification for Ulysses Arrangements”, I consider sceptical and supportive arguments concerning competence-insensitive UAs, and (...) argue that there are compelling reasons to give such UAs serious consideration. In “Decisional Competence and Legal Capacity in UAs”, I examine the nature of decisional competence and legal capacity as they arise in UAs, an issue neglected by previous research. Using the distinctions which emerge, I then identify the legal structure of a competence-insensitive UA in terms of the types of legal capacity it embodies and go on to explain how types of legal capacity might be shared between the patient and a trusted other to offer support to the patient in the creation and implementation of a competence-insensitive UA. This is significant because it suggests possibilities for building patient support mechanisms into models of legal UAs, which has not addressed in the literature to date. Drawing on this, in “Using Insights from the Competence/Capacity Distinction to Enhance Patient Support in UAs”, I offer two possible models to operationalize competence-insensitive UAs in law that allow for varying degrees of patient support through the involvement of a trusted other. Finally, I outline some potential obstacles implementing these models would face and highlight areas for further research. (shrink)

There is an important gap in philosophical, clinical and bioethical conceptions of decision-making capacity. These fields recognize that when traumatic life circumstances occur, people not only feel afraid and demoralized, but may develop catastrophic thinking and other beliefs that can lead to poor judgment. Yet there has been no articulation of the ways in which such beliefs may actually derail decision-making capacity. In particular, certain emotionally grounded beliefs are systematically unresponsive to evidence, and this can block the ability (...) to deliberate about alternatives. People who meet medico-legal criteria for decision-making capacity can react to health and personal crises with such capacity-derailing reactions. One aspect of this is that a person who is otherwise cognitively intact may be unable to appreciate her own future quality of life while in this complex state of mind. This raises troubling ethical challenges. We cannot rely on the current standard assessment of cognition to determine decisional rights in medical and other settings. We need to understand better how emotionally grounded beliefs interfere with decision-making capacity, in order to identify when caregivers have an obligation to intervene. (shrink)