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)

Body dissatisfaction has long been considered an integral component of and driving force behind anorexia nervosa. In this paper, I characterise body dissatisfaction in terms of problematic beliefs about body size and the value of thinness. I suggest two methods for understanding these beliefs. Regarding body size beliefs, I suggest focusing on certain forms of misleading phenomenal evidence that sufferers of anorexia nervosa are exposed to. Regarding beliefs about the value of thinness, I suggest focusing on the benefits of such (...) beliefs. (shrink)

On the standard view we assess a person’s competence by considering her relevant abilities without reference to the actual decision she is about to make. If she is deemed to satisfy certain threshold conditions of competence, it is still an open question whether her decision could ever be overruled on account of its harmful consequences for her (‘hard paternalism’). In practice, however, one normally uses a variable, risk dependent conception of competence, which really means that in considering whether or not (...) to respect a person’s decision-making authority we weigh her decision on several relevant dimensions at the same time: its harmful consequences, its importance in terms of the person’s own relevant values, the infringement of her autonomy involved in overruling it, and her decision-making abilities. I argue that we should openly recognize the multi-dimensional nature of this judgment. This implies rejecting both the threshold conception of competence and the categorical distinction between hard and soft paternalism. (shrink)

“Neurodiversity” is associated with the struggle for the civil rights of all those diagnosed with neurological or neurodevelopmental disorders. Two basic approaches in the struggle for what might be described as “neuro-equality” are taken up in the literature: There is a challenge to current nosology that pathologizes all of the phenotypes associated with neurological or neurodevelopmental disorders ); there is a challenge to those extant social institutions that either expressly or inadvertently model a social hierarchy where the interests or needs (...) of individuals are ranked relative to what is regarded as properly functioning cognitive capacities. In this paper, we explore some of the reasons justifying which make it an important tool for achieving greater neuro-equality, while still recognizing its limitations for achieving this goal. Particularly, we explore how an appeal to functionality and neurological diversity can support a re-seeing of at least certain forms of ASD. (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)

Euthanasia and assisted suicide have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: voluntary and well-considered request; unbearable suffering without prospect of improvement; informing the patient; lack of a reasonable alternative; independent second physician’s opinion. ‘Unbearable suffering’ must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees. The purpose of this (...) study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder. The 416 case summaries available on the RTE website were searched for intellectual disability and autism spectrum disorder. Direct content analysis was used on these nine cases. Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient’s perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis. Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards. (shrink)

In this article, I present an argument that suggests neuroscience should inform judgments of decision-making capacity. First, I review key behavioral and neurocognitive data to demonstrate that neuroscientific tests might be predictive of decision-making capacity, and that these tests might inform clinical judgments of capacity. Second, I argue that, consistent with the principles of autonomy and justice, such data should inform judgements of decision-making capacity. While the neuroscience of decision-making capacity still requires time to mature, there is strong reason to (...) believe that neuroscience might assist clinicians in adjudicating difficult cases in the future. This article focuses on the assessment of capacity in brain injury patients who have profound communication impairments, however, the overarching aim of the article is to highlight the potential use of neuroscience to improve our understanding of the relationship between cognition and decision-making capacity. (shrink)

This paper argues that there is a relationship between understandings of anorexia nervosa (AN) and how the ethical issues associated with involuntary treatment for AN are identified, framed, and addressed. By positioning AN as a construct/discourse (hereinafter “AN: the diagnosis”) several ethical issues are revealed. Firstly, “AN: the diagnosis” influences how the autonomy and competence of persons diagnosed with AN are understood by decision-makers in the treatment environment. Secondly, “AN: the diagnosis” impacts on how treatment and treatment efficacy are defined (...) and the ethical justifiability of paternalism. Thirdly, “AN: the diagnosis” can limit the opportunity for persons with AN to construct an identity that casts them as a competent person. “AN: the diagnosis” can thus inherently affirm professional knowledge and values. Postmodern professional ethics can support professionals in managing these issues by highlighting the importance of taking responsibility for professional knowledge, values, and power and embracing moral uncertainty. (shrink)

Mental capacity and autonomy are often understood to be normatively neutral? the only values or other norms they may presuppose are those the assessed person does or would accept. We show how mental disorder threatens normatively neutral accounts of autonomy. These accounts produce false positives, particularly in the case of disorders (such as depression, anorexia nervosa and schizophrenia) that affect evaluative abilities. Two normatively neutral strategies for handling autonomy-undermining disorder are explored and rejected: a blanket exclusion of mental disorder, and (...) functional tests requiring consistency, expression of identity, reflective non-alienation or lack of compulsion. Finally, we suggest ways in which substantivist alternatives to neutrality can be made more promising through increased transparency, democratic contestability of conditions for capacity and autonomy, and a historically sensitive caution concerning restrictions of liberty. (shrink)

Anorexia nervosa involves seemingly irrational beliefs about body size and the value of thinness. Historically, researchers and clinicians have avoided referring to such beliefs as delusions, instead opting for the label ‘overvalued ideas’. I discuss the relationship between the beliefs associated with anorexia nervosa and the distinction between delusions and overvalued ideas, as it is conceived in both European and American psychiatric traditions. In doing so, I question the benefit of applying the concepts of delusion and overvalued idea to anorexia (...) nervosa and raise some issues with contemporary use of the Brown Assessment of Beliefs scale for assessing the level of delusionality associated with the disorder. (shrink)

How does one scientifically verify a psychometric instrument designed to assess the mental competence of medical patients who are asked to consent to medical treatment? Aside from satisfying technical requirements like statistical reliability, results yielded by such a test must conform to at least some accepted pretheoretical desiderata; for example, determinations of competence, as measured by the test, must capture a minimal core of accepted basic intuitions about what competence means and what a theory of competence is supposed to do. (...) The concepts of “face validity” and “content validity” are both important here. Face validity “indicates that an instrument appears to test what it is supposed to and that it is a plausible method for doing so” (Portney and Watkins 2000, 82). Content validity “means that the test contains all the elements that reflect the variable being studied” (Portney and.. (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)

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)

ZusammenfassungDie Bestimmung der Einwilligungsfähigkeit von Patienten beinhaltet weitreichende ethische und rechtliche Implikationen. Ausreichende Klärung des Begriffs ist daher unerlässlich. Solche Bemühungen gelten vorwiegend der Definition von Kriterien hinsichtlich relevanter mentaler Fähigkeiten. Grundlegendere Aspekte werden kaum explizit besprochen, so die Frage, ob Einwilligungsfähigkeit eher eine inhärente Fähigkeit oder ein ethisches Urteil bezeichnet. Zentral bei dieser Unterscheidung ist der Stellenwert ethischer Überlegungen die Zulässigkeit fürsorglicher Bevormundung betreffend. Geht man von einer inhärenten Fähigkeit aus, schließen solche Überlegungen an die Beurteilung von Einwilligungsfähigkeit an. (...) Im Fall eines Urteils sind diese konstitutiv für das Verständnis und die Bestimmung von Einwilligungsfähigkeit. Obwohl Einwilligungsfähigkeit idealerweise als inhärente Fähigkeit gedacht wird, weist die tatsächliche Herangehensweise eher in die Richtung, sie als ethisches Urteil zu verstehen. Diese verschiedenen Tendenzen sind für konzeptuelle Kontroversen hinsichtlich des Stellenwerts risiko-relativer Beurteilungen verantwortlich. Des Weiteren muss sich die Bestimmung von Einwilligungsfähigkeit – konzipiert man sie als ethisches Urteil – nicht rigide an einer bestimmten Definition des Begriffs der Autonomiefähigkeit orientieren und vermag so mit dessen definitorischen Unklarheiten besser umzugehen. (shrink)

Patient competence, defined as the ability to reason, appreciate, understand, and express a choice is rarely discussed in patients with obsessive compulsive disorder, and coercive measures are seldom used. Nevertheless, a psychiatrist of psychologist may doubt whether OCD patients who refuse treatment understand their disease and the consequences of not being treated, which could result in tension between respecting the patient’s autonomy and beneficence. The purpose of this article is to develop a notion of competence that is grounded in clinical (...) practice and corresponds with the experiences of patients with obsessions and/or compulsions. We present a naturalistic case study giving both the patient’s and the therapist’s perspective based on in-depth interviews and a narrative analysis. The case study shows that competence is not merely an assessment by a therapist, but also a co-constructed reality shaped by the experiences and stories of patient and therapist. The patient, a medical student, initially told her story in a restitution narrative, focusing on cognitive rationality. Reconstructing the history of her disease, her story changed into a quest narrative where there was room for emotions, values and moral learning. This fitted well with the therapist’s approach, who used motivational interventions with a view to appealing to the patient’s responsibility to deal with her condition. We conclude that in practice both the patient and therapist used a quest narrative, approaching competence as the potential for practical reasoning to incorporate values and emotions. (shrink)

Decision making capacity (DMC) is a fundamental concept grounding the principle of respect for autonomy and the practice of obtaining informed consent. DMC must be determined and documented every time a patient undergoes a hospital procedure and for routine care when there is reason to believe decision making ability is compromised. In this paper we explore a path toward ethically informed development and implementation of a hospital policy related to DMC assessment. We begin with a review of the context of (...) DMC assessment before discussing some considerations relevant to policy creation by healthcare ethics committees. The discussion concludes in a presentation of a typology of capacity assessment policies, which draws upon a sampling of currently used hospital policies to illustrate relevant ethical considerations. (shrink)

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)

This paper scrutinizes the tension between individuals’ rights and paternalism. I will argue that no normative account that includes rights of individuals can justify hard paternalism since the infringement of a right can only be justified with the right or interest of another person, which is never the case in hard paternalism. Justifications of hard paternalistic actions generally include a deviation from the very idea of having rights. The paper first introduces Tom Beauchamp as the most famous contemporary hard paternalist (...) by outlining his moral theory (principlism) and showing why it, as it stands, has to allow for hard paternalism. Secondly, the paper focuses on the notion of rights within principlism. I will employ traditional theories of rights to make sense of rights in principlism. Unfortunately, this attempt fails. In the third part, then, I claim that rights can only be limited with reference to the rights or interests of others. This structure is the very point of rights, it is their bite. I will argue for this claim and show its implications. The most important implication is that not only principlism, but every normative theory that includes rights of individuals, has to abolish hard paternalism. (shrink)

Ein Argument gegen die ärztliche Beihilfe zum Suizid lautet, Patienten könnten sich um Suizidassistenz bemühen, weil sie sich als Belastung empfinden. Dabei wird die Selbstbestimmtheit eines so motivierten Todeswunsches in Frage gestellt. Ist dieses Argument überzeugungskräftig? Empirische Daten zeigen, dass die ärztliche Beihilfe zum Suizid auf der Grundlage dieses Motivs den ethischen Prinzipien der Sorge um das Patientenwohl und des Respekts vor der Autonomie des Patienten nicht widersprechen muss. Denn das Empfinden, anderen zur Last zu fallen, kann trotz adäquater palliativmedizinischer (...) Betreuung wesentlich zu einem Leidensdruck am Lebensende beitragen. Zudem ist dieses Motiv eng verknüpft mit der Sorge um das Wohl der Angehörigen, die einer erheblichen Belastungssituation ausgesetzt sein können. Da aber das Wohlergehen der Familie zu den elementaren Werten von schwerstkranken Patienten am Lebensende gehört, kann der Wunsch nach ärztlicher Beihilfe zum Suizid auch auf der Basis dieses Motivs Ausdruck eines selbstbestimmten Patientenwillens sein. Andererseits korreliert das Empfinden, anderen zur Last zu fallen, mit einer depressiven Verstimmung. Dieser Zusammenhang ist deshalb relevant, da bei depressiven Störungen eine Einschränkung der Selbstbestimmungsfähigkeit vorliegen kann. Vor diesem Hintergrund sind Zweifel an der Selbstbestimmtheit eines so motivierten Sterbewunsches durchaus begründet. Aufgrund des bestehenden Wissensdefizits bei der Feststellung der Selbstbestimmungsfähigkeit ist die Mitwirkung des Arztes bei einem so motivierten Todeswunsch daher ethisch fragwürdig. (shrink)

The Mental Capacity Act 2005 has put the assessment of mental capacity for decision-making at the forefront of psychiatric practice. This capacity is commonly linked within philosophy to (personal) autonomy, that is, to the idea, or ideal, of self-government. However, philosophers disagree deeply about what constitutes autonomy. This contribution brings out how the competing conceptions of autonomy would play out in psychiatric practice, taking anorexia nervosa as a test case. © 2009 Elsevier Ltd. All rights reserved.

Eric C. Ip has recently argued that seriously anorexic service users ought to be assumed to be legally incapacitous to refuse life‐saving artificial nutrition unless they can demonstrate otherwise, reversing the ordinary legal presumption in place to protect patients’ liberty and values. In this response, I argue against this proposal on two grounds. Firstly, the proposal is wrongfully discriminatory; it would expose service users to serious harm, and wrong them in numerous ways, on the basis of their diagnosis alone, without (...) significantly benefitting them in any way relative to the status quo. Secondly, he is unable to show that a large majority of such service users actually are incapacitous to refuse life‐saving artificial nutrition. This means that his proposal would likely involve declaring a large number of actually capacitous patients to be incapacitous, without even the requirement of a formal assessment, and burdening them with the responsibility of proving their clinical team wrong if they wish to avoid deprivation of liberty and/or compelled treatment. Given this, his proposal is indefensible. (shrink)

Severe brain injury is a leading cause of death and disability. Following severe brain injury diagnosis is difficult and errors frequently occur. Recent findings in clinical neuroscience may offer a solution. Neuroimaging has been used to detect preserved cognitive function and awareness in some patients clinically diagnosed as being in a vegetative state. Remarkably, neuroimaging has also been used to communicate with some vegetative patients through a series of yes/no questions. Some have speculated that, one day, this method may allow (...) severely brain-injured patients to make medical decisions. Yet, skepticism is rife, due in part to the inherent difficulty of assessing decision-making capacity through neuroimaging communication. In this thesis, I provide the first systematic analysis of this problem. I present and defend a strategy for assessing decision-making capacity in brain-injured patients who can only communicate through neuroimaging. (shrink)

Competent decision-making is required for informed consent. In this paper, I aim, from a phenomenological perspective, to identify the specific facets of competent decision-making that may form a challenge to depressed patients. On a phenomenological account, mood and emotions are crucial to the way in which human beings encounter the world. More precisely, mood is intimately related to the options and future possibilities we perceive in the world around us. I examine how possibilities should be understood in this context, and (...) how, in depression, decision-making might be compromised. I suggest that, based on this analysis, a specific emphasis and alertness in assessments of competence in depressed patients is called for. In fact, close attention should be paid to the range of future possibilities depressed patients are able to perceive. In addition, providing environmental cues to these patients might be one way of enhancing their decision-making capacity. The practical suggestions arrived at are open to empirical research. (shrink)

Examples of patients with anorexia nervosa, depression or borderline personality disorder who have decision-making capacity as currently operationalized, but refuse treatment, are discussed. It appears counterintuitive to respect their treatment refusal because their wish seems to be fuelled by their illness and the consequences of their refusal of treatment are severe. Some proposed solutions have focused on broadening the criteria for decision-making capacity, either in general or for specific patient groups, but these adjustments might discriminate against particular groups of patients (...) and render the process less transparent. Other solutions focus on preferences expressed when patients are not ill, but this information is often not available. The reason for such difficulties with assessing decision-making capacity is that the underlying psychological processes of normal decision-making are not well known and one cannot differentiate between unwise decisions caused by an illness or other factors. The proposed alternative, set out in this paper, is to allow compulsory treatment of patients with decision-making capacity in cases of an emergency, if the refusal is potentially life threatening, but only for a time-limited period. The argument is also made for investigating hindsight agreement, in particular after compulsory measures. -/- . (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)

Part I of the dissertation examines the cognitive aspects of autonomy. The central question concerns what kind of cognitive capacity autonomy is. It will be argued that the concept of autonomy is best understood in terms of a metacognitive capacity of the individual. It is argued that metacognition has two components: procedural reflexivity and metarepresentation. Metarepresentation in turn can be divided into inferential reflexivity and other-attributiveness. These two components are essential for autonomy. Particular emphasis is put on procedural reflexivity. Further, (...) since the essential function of metacognition is control, it is argued that the concept of autonomy, understood as a metacognitive capacity, can be interpreted in terms of control. Issues arising from empirical data from neuroscience on functional, as well as impaired, metacognition, and on undermined autonomy, are dealt with. It is argued that autonomy cannot be determined with respect to subjective conditions. Neurological impairments, like Anton’s Syndrome, dementia, and thought insertion in schizophrenia, are put forward in support of this claim. To determine autonomy we require external conditions. In order to determine whether an individual is autonomous, both the metacognitive status of the individual and the external setting must be considered, since they are in interplay and consequently influence each other. In Part II, the analysis put forward in Part I is applied to Swedish healthcare. It is argued that the distinction between autonomy as a right and as a capacity must be explicit in order to understand what autonomy means and to deal with it effectively in healthcare practice. A discussion about whether or not the patient’s right to autonomy sometimes tends to be over-emphasized in healthcare is put forward. Special emphasis is placed on psychitaric issues such as deinstitutionalization and participation. Following the closure of the mental hospitals, deinstitutionalization and community-based care have become central topics in psychiatry. At the same time, the implementation of such care can be demanding for patients suffering from a persistent mental disorder. In part II it is also suggested that the metacognitive account of the concept of autonomy might help clarify the criteria governing coercive care. Finally, some suggestions concerning developments and improvements in Swedish healthcare, especially in psychiatry, where the concept of autonomy is important but problematic, are put forward. (shrink)