An important philosophical issue in the study of addiction is what difference the fact that a person is addicted makes to attributions of autonomy (and responsibility) to their drug-oriented behavior. In spite of accumulating evidence suggesting the role of emotional dysregulation in understanding addiction, it has received surprisingly little attention in the debate about this issue. I claim that, as a result, an important aspect of the autonomy impairment of many addicted individuals has been largely overlooked. A (...) widely shared assumption in the philosophical literature is that for addiction to impair a person’s autonomy it has to make them (in some sense) take drugs against their will. So-called “willing addicts” are therefore usually seen as exempted from the autonomy impairment believed to characterize “unwilling addicts”, the latter being those who ‘truly want’ to stop using drugs but find their attempts repeatedly derailed by failures of self-control. In this article, I argue that the association between addiction and emotional dysregulation shows why this assumption is false. Emotional dysregulation is not only consistent with the possibility that many addicts take drugs ‘willingly’, it supports the hypothesis that they use drugs because they truly want to. The article proposes an explanation for why emotional dysregulation should nevertheless be seen as an aspect of their loss of control and an important reason why they have impaired autonomy. I end by exploring some implications of this account for addict’s decision-making capacity when they are prescribed the drugs to which they are addicted. -/- . (shrink)

Dignity, usually considered an essential ethical value in healthcare, is a relatively complex, multifaceted concept. However, healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for persons with impaired autonomy. This article focuses on two concepts of dignity, human dignity and dignity of identity, and aims to analyse how these concepts can be applied in the care for persons with impaired autonomy and in furthering the practice of respect (...) and protection from harm. Three vignettes were designed to illustrate typical caring situations involving patients with mild to severely impaired autonomy, including patients with cognitive impairments. In situations like these, there is a risk of the patient’s dignity being disrespected and violated. The vignettes were then analysed with respect to the two concepts of dignity to find out whether this approach can illuminate what is at stake in these situations and to provide an understanding of which measures could safeguard the dignity of these patients. The analysis showed that there are profound ethical challenges in the daily care of persons with impaired autonomy. We suggest that these two concepts of human dignity could help guide healthcare professionals to develop practical skills in person-centred, ethically grounded care, where the patient’s wishes and needs are the starting point. (shrink)

Smajdor invites welcome interrogation of the distance between our philosophical justifications of how we engage people in decisions about healthcare or research, and the ways we do so.1 She notes the implicit elision made between autonomy and informed consent, and argues the latter alone cannot secure the former, proposing a more flexible approach. As researchers working with people with dementia (PwD), we share Smajdor’s reservations. We argue that an autonomy worthy of respect requires not just decision-making capacity, but (...) also authenticity; the ability to determine for oneself what is good for oneself.2 Furthermore, our relationships support or undermine both capacity and authenticity, and autonomous expression manifests throughout evolving relationships. This invites us to view respect differently—as an ongoing conversation with another person, capable of holding values that may move us. In Smajdor’s terminology, it requires that we recognise them. We describe how we operationalise this in our research. Three broad arguments usually support respect for autonomy.2 One—owed to JS Mill—holds that permitting individuals free choice promotes utility of all, by helping them fulfil ideas of the good, demonstrating ‘experiments in living’. Another draws from Kant’s categorical imperative; its Formula of Humanity holds that the capacity to determine our own values gives us reason to act, and we ought, therefore, to treat others’ values with the respect we show our own. Lastly, many simply assume ‘liberal neutrality’—an intrinsic value in people being permitted to pursue the …. (shrink)

There is little need to argue for the importance of human rights (HRs) in our world. If one looks at the role they play today, it is hard to deny that their impact has increased beyond anything the drafters of the 1948 Universal Declaration could have hoped or imagined. However, even though human rights today have a far greater impact on politics than in the past, the philosophical reflection that surrounds them has had a less fortunate history. It is doubtful (...) whether we are today in a better position than we were in 1948 to answer any of the philosophical questions surrounding them, including, and perhaps most crucially, the question about their foundation. Why are human rights standards—of whatever sort—that we should adopt, or even just take seriously? The first two parts of this paper summarize my recent work on the above question (Caranti, 2017) and the third takes it a step further. I will 1) show why the main orientations in the contemporary philosophy of human rights all fail to yield a satisfactory foundation, 2) sketch an alternative foundation that exploits Kant’s account of human dignity in a rather critical way; and 3) address one major objection my approach is bound to attract (and in a certain form has already attracted). Since my foundation suggests that we have dignity (and as a consequence human rights) because we are autonomous, that is, capable of moral behavior, some scholars have argued that I am bound to the counterintuitive conclusion that people with a temporary or permanent lack of rational capacity, which would cause a condition of “impaired autonomy,” are not entitled to the protection of human rights. While this objection does nothing but reformulate in the language of human rights an old, classical objection to Kant’s ethics, replying to it requires mobilizing new intellectual resources. (shrink)

Theorists who support the legalisation of active euthanasia usually base their arguments on the principle of autonomy. In their view the wish of a severely ill person not to continue his or her life must be respected. However, some opponents of the legalisation of active euthanasia refer to the principle of autonomy as well. They are concerned that patients may be held responsible for burdening others with the provision of care. Thus family members, physicians or nurses may exert (...) pressure on patients to opt for active euthanasia. In this article it is argued that these worries are justified; the occurrence of social coercion poses a real danger. However, neither the prohibition nor the permission of active euthanasia enables each individual to make an autonomous choice. Comparing the risks involved in both options, legalisation seems to be preferable to maintaining the status quo. (shrink)

Whatever its implications for the other features of human agency at its best — for moral responsibility, reasons-responsiveness, self-realization, flourishing, and so on—addiction is universally recognized as impairing autonomy. But philosophers have frequently misunderstood the nature of addiction, and therefore have not adequately explained the manner in which it impairs autonomy. Once we recognize that addiction is not incompatible with choice or volition, it becomes clear that none of the Standard accounts of autonomy can satisfactorily explain the (...) way in which it undermines fully autonomous agency. In order to understand to what extent and in what ways the addicted are autonomy-impaired, we need to understand autonomy as consisting, essentially, in the exercise of the capacity forextended agency.It is because addiction undermines extended agency, so that addicts are not able to integrate their lives and pursue a Single conception of the good, that it impairs autonomy. (shrink)

This collection of original essays explores the social and relational dimensions of individual autonomy. Rejecting the feminist charge that autonomy is inherently masculinist, the contributors draw on feminist critiques of autonomy to challenge and enrich contemporary philosophical debates about agency, identity, and moral responsibility. The essays analyze the complex ways in which oppression can impair an agent's capacity for autonomy, and investigate connections, neglected by standard accounts, between autonomy and other aspects of the agent, including (...) self-conception, self-worth, memory, and the imagination. (shrink)

There is a strong presumption that mental disorder injures a person's autonomy, understood as a set of capacities and as an ideal condition of agency which is worth striving for. However, recent multidimensional approaches to autonomy have revealed a greater diversity in ways of being autonomous than has previously been appreciated. This presumption, then, risks wrongly dismissing variant, neuro-atypical sorts of autonomy as non-autonomy. This is both an epistemic error, which impairs our understanding of autonomy (...) as a phenomenon, and a moral error, which withholds recognition and respect that autonomous agents are due. I argue that careful attention to the different 'shapes' of agent's autonomy reveals that there are indeed distinctive kinds of neuro-atypical autonomy that are widely mistaken for non-autonomy. This project argues for two propositions. First, that there is a kind of autonomy, with a distinctive shape and texture, available to bipolar agents. This is a variant sort of autonomy, but not a defective or deficient sort. It is the ideal of autonomy that it is worth bipolar agents striving for, given the range and intensity of experiences that they will have to confront. Whilst bipolar autonomy will look unlike more neurotypical kinds of autonomy, it continues to be owed recognition. The second proposition is that we should understand the ideal of autonomy to be both pluralist and highly context sensitive. Given the range of starting points from which agents will strive to an ideal of autonomy, there will be some variation in the ideals worth striving for. The variation in ideals will reflect the existential realities they are local to. Theory of autonomy must be adapted to recognise bipolar, and other neuro-atypical, kinds of autonomy, and to reflect this wider pluralism. These propositions will be argued for with careful attention to the experiences and agency of people living with bipolar, or related, disorders. Understanding the ways that manic or depressive episodes, and the shifts between them, alter and apply pressure to our agency will inform an account of the distinctively bipolar autonomy that can be built on top of it. (shrink)

Several ethicists have argued that research trials and treatment programs that involve the provision of drugs to addicts are prima facie unethical, because addicts can’t refuse the offer of drugs and therefore can’t give informed consent to participation. In response, several people have pointed out that addiction does not cause a compulsion to use drugs. However, since we know that addiction impairs autonomy, this response is inadequate. In this paper, I advance a stronger defense of the capacity of addicts (...) to participate in the programs envisaged. I argue that it is only in certain circumstances that addicts find themselves choosing in ways that conflict with their genuine preferences. Research and treatment programs have none of the features that characterize choices in these autonomy-undermining circumstances, and there is therefore no reason to think that addicts lack the capacity to give informed consent to these programs. (shrink)

In this paper, I develop a phenomenological description of lived autonomy and describe possible alterations of lived autonomy associated with chronic depression as they relate to specific psychopathological symptoms. I will distinguish between two types of lived autonomy, a pre-reflective type and a reflective type, which differ with respect to the explicitness of the action that is willed into existence; and I will relate these types to the classical distinction between freedom of intentional action and freedom of (...) the will. I will then describe how a chronically depressed person habitually discloses her experiential workspace with an impaired scope of perceivable action-properties, and pre-reflectively values many of these perceived action-properties as demanding or devalues these properties as well as her own abilities and drive to perform the respective actions. These alterations, typically experienced in a passive manner, imply an impairment of both types of lived autonomy. Drawing on first-hand accounts, I will then argue that small islands of lived autonomy, even of the reflective type, are possible if the afflicted identifies with at least some of her ‘depressive disabilities’. Lastly, I will compare this manner of life-conduct with the constellation of includence, as described by Tellenbach, and discuss the limitations of this study. (shrink)

The clinical application of the concept of patient autonomy has centered on the ability to deliberate and make treatment decisions (decisional autonomy) to the virtual exclusion of the capacity to execute the treatment plan (executive autonomy). However, the one-component concept of autonomy is problematic in the context of multiple chronic conditions. Adherence to complex treatments commonly breaks down when patients have functional, educational, and cognitive barriers that impair their capacity to plan, sequence, and carry out tasks (...) associated with chronic care. The purpose of this article is to call for a two-component re-conceptualization of autonomy and to argue that the clinical assessment of capacity for patients with chronic conditions should be expanded to include both autonomous decision-making and autonomous execution of the agreed-upon treatment plan. We explain how the concept of autonomy should be expanded to include both decisional and executive autonomy, describe the biopsychosocial correlates of the two-component concept of autonomy, and recommend diagnostic and treatment strategies to support patients with deficits in executive autonomy. (shrink)

The urgency of the resuscitation and the impaired ability of the patient to make a reasonable autonomous decision both conspire against adequate consideration of the principles of medical ethics. Informed consent is usually not possible for these reasons and this leads many to consider that consent is not required for resuscitation, because resuscitation brings benefit and prevents harm and because the patient is not in a position to give or withhold consent. However, consent for resuscitation is required and the common (...) models employed for this purpose are presumed consent or consent from a patient proxy. However, if we are to honour the principles of respect for patient autonomy, as well as beneficence and non-maleficence, when starting and continuing resuscitation we must try and achieve the best balance between benefit and harm from the patient's perspective. The concept of professional substituted judgment involves the resuscitators gathering as much information about the patient as they possibly can, including any previously expressed attitudes towards such a situation, and combining this with their acquired professional knowledge of the likely benefits and harms of the resuscitation endeavour and then exercising their moral imagination, imagining themselves as the patient, and asking "would I want this treatment?" By employing professional substituted judgment resuscitators should recognise when the balance of benefit and harm becomes unfavourable from the patient's perspective and at this point they have a moral obligation to withdraw resuscitation as they can no longer presume the patient's consent. In this way the principles of beneficence, non-maleficence and respect for patient autonomy are more favourably balanced than under other resuscitation decision making processes. (shrink)

The relationship between adults and children in liberal democracies is based on two flawed assumptions that are widespread: first, that childhood is an impediment, a passing phase of impaired maturity; and second, that children benefit from the proliferation of rights ascribed to them. Social institutions, and particularly the education system, are correspondingly misconstrued. This article focuses on the combined effect of vulnerability and autonomy as they construct contemporary childhood. I conclude that adults' obligations rather than children's rights are the (...) appropriate social, political and educational basis for adult society's relations with children. (shrink)

This book brings together insights from the enactivist approach in philosophy of mind and existing work on autonomous agency from both philosophy of action and feminist philosophy. It then utilizes this proposed account of autonomous agency to make sense of the impairments in agency that commonly occur in cases of dissociative identity disorder, mood disorders, and psychopathy. While much of the existing philosophical work on autonomy focuses on threats that come from outside the agent, this book addresses how inner (...) conflict, instability of character, or motivational issues can disrupt agency. In the first half of the book, the author conceptualizes what it means to be self-governing and to exercise autonomous agency. In the second half, she investigates the extent to which agents with various forms of mental disorder are capable of exercising autonomy. In her view, many forms of mental disorder involve disruptions to self-governance, so that agents lack sufficient control over their intentional behavior or are unable to formulate and execute coherent action plans. However, this does not mean that they are utterly incapable of autonomous agency; rather, their ability to exercise this capacity is compromised in important respects. Understanding these agential impairments can help to deepen our understanding of what it means to exercise autonomy, and also devise more effective treatments that restore subjects' agency. Autonomy, Enactivism, and Mental Disorder will be of interest to researchers and advanced students working in philosophy of mind, philosophy of action, philosophy of psychiatry, and feminist philosophy. (shrink)

For the past three decades philosophical discussions of both personal autonomy and what it is for a person to “identify” with her desires have been dominated by the “hierarchical” analyses of these concepts developed by Gerald Dworkin and Harry Frankfurt. The longevity of these analyses is owed, in part, to the intuitive appeal of their shared claim that the concepts of autonomy and identification are to be analyzed in terms of hierarchies of desires, such that it is a (...) necessary condition for a person to be autonomous with respect to a desire that moves her to act, that she desires that this desire so move her. Despite the intuitive appeal of these analyses, however, Irving Thalberg has argued that they should be rejected. This is because, he argues, a person who is forced to perform an action by being subjected to duress of a certain degree of harshness will desire to be moved by her desire to submit. Thus, he continues, the proponents of hierarchical analyses of autonomy and identification will be forced to hold that such a person acted willingly, and did not suffer from any impairment in her autonomy. This, Thalberg concludes, is so counterintuitive as to justify rejecting hierarchical analyses. (shrink)

Most opponents of paternalism agree that autonomy does not protect substantially impaired choices. Yet this common anti-paternalist view faces serious problems. First, I argue that it threatens to justify nearly all beneficial intervention, since all imprudent choices are impaired. Attempts to avoid this problem yield other implications that anti-paternalists would reject. Second, I argue that anti-paternalists have no convincing way of showing that impaired choices, such as those produced by emotional distress, are not protected by autonomy. In light (...) of these problems, we should likely accept a hard paternalist view--one that permits intervention simply in virtue of the consequences. (shrink)

Diana Tietjens Meyers and Margaret Urban Walker argue that women's autonomy is impaired by mainstream representations that offer us impovenshed resources to tell our own stories. Mainstream picture books apprentice young readers in norms of representation. Two popufor picture books about child storyteüers present competing views of a child's authority to tell his or her own story. Hence, they offer rival models of the development of autonomy: neoAiberal versus relational. Feminist critics should attend to such implicit models and (...) the hidden assumptions they represent in children's books. (shrink)

In 2020, M. Summa developed a promising approach to understanding the concept of illness. This approach combines a theory of organisms with Responsive Phenomenology to gain a concept of illness. Following on from this, the present article shows that the normative presuppositions can be further explicated and justified by drawing on the theoretical resources of Aristotelian naturalism as propounded by Michael Thompson. Aristotelian naturalism does provide a theoretical option to grasp the normative foundations of human life. However, this article argues (...) that Aristotelian naturalism requires another criterion besides human nature to make the concept of illness intelligible. Following John McDowell’s critique of Aristotelian naturalism, it will be shown that this criterion consists in the capacity for autonomy. From this a concept of illness is developed which describes an impairment of the self-regulated and autonomous realisation of the human form of life. (shrink)

This case describes an adolescent in a crisis of a chronic medical condition whose situation is complicated by substance abuse and mental illness. D. Micah Hester provides an analytic approach, teasing apart the multiple layers of medical, developmental, and moral issues at hand and describing possible responses and outcomes. Amy T. Campbell examines existing legal guidelines for adolescent decision making, arguing that greater space exists for clinical discretion in these matters than commonly thought. Cheryl D. Lew discusses the development of (...) agency in adolescent patients, the ideal of autonomous decision making in the context of impairment and chronic illness, and the obligation of healthcare teams to examine an adolescent patient’s decisions in relation to her identity. (shrink)

This chapter identifies and explores a series of challenges raised by the clinical concept of delusion for theories which conceive autonomy as an agency rather than a status concept. The first challenge is to address the autonomy-impairing nature of delusions consistently with their role as grounds for full legal and ethical excuse, on the one hand, and psychopathological significance as key symptoms of psychoses, on the other. The second challenge is to take into account the full logical range (...) of delusions, which may take the form of true or false factual beliefs, positive or negative evaluations, as well as the paradoxical delusion of mental illness. The third and final challenge is to make room for non-pathological or, autonomy-preserving delusions and to offer a credible way of distinguishing between these and pathological or, autonomy-impairing delusions. By setting out these challenges, we are able to, firstly, distinguish between two separate conceptions of objectivity that may be at work in existing accounts of delusions and, secondly, to put a spotlight on an elusive yet inescapable notion of agential success that underlies our thinking about autonomy as well as mental disorder. (shrink)

The present research examined relationships between parental autonomy support, parental psychological control, and Chinese emerging adults’ autonomous regulation in their university studies as well as dysregulation in social media engagement. A total of 287 Chinese university students reported on their perceived parenting styles, psychological needs, and behavior regulation. Results showed that basic psychological need satisfaction was positively associated with parental autonomy support and autonomous regulation of learning; need frustration was positively correlated with parental psychological control and dysregulation in (...) social media engagement. More importantly, psychological need frustration was a mediator of the relation between parental psychological control and dysregulation in social media engagement. Our findings suggest that students living in an autonomy-supportive familial environment tend to have satisfied psychological needs as well as autonomous learning behavior. Impairment of psychological needs could be one of the mechanisms through which psychologically controlling parenting was linked to dysregulation of social media use in Chinese culture. (shrink)

This article will examine the claim that personal autonomy is impaired by a paradigmatic instance of serious psychopathology – namely, the condition of being delusional – in light of the hierarchical conception of personal autonomy. This conception of personal autonomy aims at yielding value‐neutral judgements about freedom and self‐governance. I will argue that when viewed from the perspective of this specific conception of autonomy, delusions do not necessarily impair an agent's personal autonomy. In order to (...) establish this claim, I will probe the general idea that delusional subjects are beset by a mental disease that is rationally incapacitating, to which the hierarchical theorist might appeal. I argue that, understood within the parameters set by the commitment to value neutrality, this idea fails to provide support for the claim that delusion necessarily impairs personal autonomy. One contribution this article makes to the effort of understanding how delusion impairs personal autonomy is to help us pinpoint the ways in which our value commitments inform our judgements of impaired personal autonomy in delusional agents. (shrink)

This article will examine the claim that personal autonomy is impaired by a paradigmatic instance of serious psychopathology – namely, the condition of being delusional – in light of the hierarchical conception of personal autonomy. This conception of personal autonomy aims at yielding value‐neutral judgements about freedom and self‐governance. I will argue that when viewed from the perspective of this specific conception of autonomy, delusions do not necessarily impair an agent's personal autonomy. In order to (...) establish this claim, I will probe the general idea that delusional subjects are beset by a mental disease that is rationally incapacitating, to which the hierarchical theorist might appeal. I argue that, understood within the parameters set by the commitment to value neutrality, this idea fails to provide support for the claim that delusion necessarily impairs personal autonomy. One contribution this article makes to the effort of understanding how delusion impairs personal autonomy is to help us pinpoint the ways in which our value commitments inform our judgements of impaired personal autonomy in delusional agents. (shrink)

Key commentators on person‐centred care have described it as a “new ethic of care” which they link inextricably to notions of individual autonomy, action, change and improvement. Two key points are addressed in this article. The first is that few discussions about ethics and person‐centred are underscored by any particular ethical theory. The second point is that despite the espoused benefits of person‐centred care, delivery within the acute care setting remains largely aspirational. Choices nurses make about their practice tend (...) to comply more often with prevailing norms than those championed by person‐centred care. We draw on elements of work by moral philosopher Løgstrup and Foucault to provide insight into nurses’ ethical conduct and ask why nurses would want to act otherwise, when what they think and do is viewed as normal, or think and act otherwise if doing so is seen within the organization as transgressive? To address these more specific questions, we discuss them in relation to the following constructs: the ethical demand, sovereign expressions of life and parrhêsia. We conclude by arguing that a ethical theoretical framework enables nurses to increase their perceptibility and appreciation of the ethical demand particularly those emanating from incommensurability between organizational norms and the norms invoked by person‐centred care. We argue that nurses’ responses to the ethical demand by way of parrhêsia can be an important feature of intra‐organizational reflexivity and its transformation towards the delivery care that is more person‐centred, particularly for older people with cognitive impairment. We conclude the article by highlighting the implications of this for nursing education and research. (shrink)

Behavioural variant frontotemporal dementia (bvFTD) is characterized by an absence of obvious cognitive impairment and presence of symptoms such as disinhibition, social inappropriateness, personality changes, hyper-sexuality, and hyper-orality. Affected individuals do not feel concerned enough about their actions to be deterred from violating social norms, and their antisocial behaviours are most likely caused by the neurodegenerative processes in the frontal and anterior temporal lobes. BvFTD patients present a challenge for the traditional notion of autonomy and the medical and (...) criminal justice systems. Antisocial behaviour is often the earliest recognized manifestation of bvFTD. Given that the symptoms are not specific and that atrophy of the frontal lobes is only observable with structural neuroimaging in the later stages of the disease, it is hard to ascertain their autonomy. Recently proposed re-conceptualizations of autonomy (Dworkin’s, Jaworska’s, and Dubljević’s) can, however, be sufficiently redefined to provide explicit rules and offer nuanced guidance in such cases. A combination of notions of autonomy gives the most nuanced guidance with three modifications: 1) including socio-moral judgement in the notion of “normal cognitive competence,” 2) excluding in-principle un-endorsable ideals from the notion of “capacity to value,” and 3) redefining ideal-typical degrees of compulsion (mild, severe, and total). (shrink)

This paper offers an analysis of the relation between political populism and mass media, and how this relation becomes problematic for democratic societies. It focuses on the fact that mass media, due to their purpose and infrastructure, can unintentionally reinforce populist messages. Research findings from communication science and political psychology are used to illustrate how, for example, a combination of mass media agenda setting and motivated reasoning can influence citizens’ political decisions and impair their political autonomy. This poses a (...) particular normative challenge for modern democracies: how to counter these populism-supporting effects within the constraints of democratic legitimacy? After showing how severely limited legal measures to curb populist media effects would be, the paper argues in favour of media competence education as a way of providing future citizens with an epistemic toolkit to navigate the media environment and strengthen their political autonomy. (shrink)

I have reviewed, and made criticisms of, Sarah Conly's book elsewhere.1 ,2 In this comment, I am a constructive critic who wants to discuss an argument against paternalism that is different from the three which Conly emphasises in her precis. It is an argument that she attacks in her book, and I want to support her objection to it.iThe argument raises a quite particular objection to paternalism, that is, that it does not treat the object of paternalistic interference with proper (...) respect. For paternalism always rests on a premise that the agent is making a mistake in her decision making , that she is not fully capable of making a rational decision and that she is in some way impaired in her cognitive or affective dispositions. And since all paternalistic interventions assume this premise, they all are expressing a judgement about the agent that is an insult. They fail to treat the agent as a rational and capable agent.3Two things should be noted about this argument. First, it only establishes that paternalism is pro tanto wrong. There may be occasions where an insult is less important, morally speaking, than some other consideration. Second, it is interesting to note that this objection can apply to ‘nudges’ as well as coercive interventions. For all nudges involve the premise that without the nudge the agent is more likely to make a mistake in his decisions. He will eat …. (shrink)

Twenty-five long-term care nurses in eight nursing homes in central Kentucky were inter viewed concerning ways in which they might assist elderly residents to preserve and enhance their personal autonomy. Data from the interviews were analysed using grounded theory methodology. Seven specific categories of assisting were discovered and described: personalizing, informing, persuading, shaping instrumental circumstances, considering, mentioning opportunities, and assessing causes of an impaired capacity for decision-making. The ethical implications of these categories of assisting for clinical prac tice are (...) examined. Although nurses recognized the importance of resident autonomy, the majority of them failed consistently to employ the categories of assistance to foster resi dent self-determination and most of them held an inadequate understanding of the con cepts of consent and decisional capacity. To assure confidentiality, pseudonyms are used in the following cases and discussions for all names of nurses, residents and facilities. (shrink)

This systematic review identifies and critically evaluates instruments that have been developed to measure clinical trial informed consent comprehension in non-cognitively-impaired adults.Literature searches were carried out on Medline (Ovid), PsycInfo, CINHAL, ERIC, ScienceDirect, and Cochrane Library for English language articles published between January 1980 and September 2008. Instruments were excluded if they focused on consent onto paediatric trials, the construct under study was primarily capacity or competency, or the instrument was developed specifically for psychiatric or cognitively-impaired populations. Instruments selected for (...) review were evaluated against the following criteria: (1) method of item generation; (2) type and format of test items; (3) administration and interpretation of test results; and (4) psychometric properties.Three instruments met our defined inclusion criteria: the Deaconess Informed Consent Comprehension Test (DICCT), the Quality of Informed Consent (QuIC) questionnaire and the Brief Informed Consent Protocol (BICEP). Each instrument varied in terms of content measured. Significantly, these are the first standardized instruments developed to assess comprehension in non-cognitively-impaired adults. Yet, each instrument had its own set of limitations such as the lack of generalizability and the absence of details pertaining to how test results should be used to guide clinical decision-making.Standardized clinical trial informed consent comprehension assessments have been developed to identify gaps in research participants' understanding and ensure that respect for patient autonomy is satisfied. (shrink)

The autonomy of chronic patients in Iranian hospitals is challenged by impaired functioning resulting from chronic illness, a negative image in society, and effects related to hospitalization. Comprehensive interviews and observations of 34 patients, nurses, and physicians were performed to assess the autonomy of chronic patients in Iran. Conceptualization, constant comparison, and the combination of data resulted in the identification of 5 main categories related to autonomy: welcoming paternalism, self-expression, self-proof, shared decision making, and self-determination. Authority scrambling (...) was a central category describing chronic patients’ perceptions of their autonomy during hospitalization. These patients sought to maintain their independence despite serious threats to their autonomy. (shrink)

Neo-Kantian philosophers see accountability as a key property of autonomy, or of social freedom more broadly. Autonomy, among those theorists, is, I contend, implicitly co-conceived with responsibility, producing a quasi-juridical conception of autonomy and a limiting notion of freedom. This article criticizes the connecting of freedom with accountability on a number of grounds. First, various conceptions of autonomy not only operate without a notion of accountability, but, in fact, would be impaired by an accountability requirement. Second, (...) the neo-Kantians are unable to defend the freedom enhancing properties that are supposedly brought about by the giving of reasons for one’s beliefs and actions. Third, the project of accountability is indifferent to personal outlooks, not because it takes a holistic perspective, but because of its interest in social convergence. (shrink)

The Hypothesis of Extended Cognition (HEC)—that many cognitive processes are carried out by a hybrid coalition of neural, bodily and environmental factors—entails that the intentional states that are reasons for action might best be ascribed to wider entities of which individual persons are only parts. I look at different kinds of extended cognition and agency, exploring their consequences for concerns about the moral agency and personal responsibility of such extended entities. Can extended entities be moral agents and bear responsibility for (...) actions, in addition to or in place of the individuals typically held responsible? What does it mean to be autonomous when one’s cognition is influenced and supported by a milieu of environmental factors? To answer these questions, I explore strong parallels between HEC’s critique of individualism in cognition, and feminist critiques of individualist accounts of self, agency, and autonomy. This relational and social conception of autonomous agency, as scaffolded and supported (or undermined and impaired) by a milieu of social, relational, and normative factors, has important lessons for HEC. Drawing together these two visions of distributed and decentralized aspects of personhood highlights how cognition, action, and responsibility are inextricably linked. It also encourages a reconceptualization of all cognition and all concerns about responsibility for actions, not simply as sometimes extended around individuals, but as fundamentally communal, social, and normative, with individual cognition and individual moral responsibility being derivative special cases, not the paradigm examples. Individuals are merely one of many possible loci of cognition, action, and responsibility. (shrink)

This commentary on “Her Own Decision: Impairment and Authenticity in Adolescence” by Campbell, Derrington, Hester, and Lew adds further consideration of obligations for guardians and physicians of minors who struggle in making serious decisions regarding medical treatment.

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)

In this paper, we argue that boredom can be an important experience that contributes to personal autonomous agency by providing authentic motivation, and that strategies of social media providers to bind users’ attention to their platforms undermine this authenticity. As discussed in social epistemology and media ethics for a while now, such strategies can lead to so-called epistemic or filter bubbles. Our analysis of the relation between boredom and social media use focuses on a similarly impairing effect of social media (...) on users’ autonomy, which we call authenticity bubbles. (shrink)

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the (...) necessary conditions of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. (shrink)

Autonomy is one of the most contested concepts in philosophy and psychology. Much of the disagreement centers on the form of reflexivity that one must have to count as genuinely self-governing. In this essay, we argue that an adequate account of autonomy must include a distinct requirement of accurate self-assessment, which has been largely ignored in the philosophical focus on agents' ability to evaluate the desirability of acting on certain impulses or values. In our view, being autonomous (i.e., (...) self-guiding) involves understanding the extent to which one has the capacities required for one's intended actions. On both clinical grounds (drawn from cases of frontal brain injury) and conceptual grounds, we argue that one's autonomy is diminished to the extent to which one's ability to assess one's capacities is impaired. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction:The Heat of Mild Cognitive ImpairmentJulian C. Hughes (bio)Keywordsaging, explanation, mild cognitive impairment, understanding, valuesDebates about mild cognitive impairment (MCI) are generating heat, albeit civilized heat. But under the surface, as I think the papers in this special issue demonstrate, the civilized heat comes from a good deal of passion. One way in which philosophy can contribute to the debate is by making plain the sources of (...) this passion, so that the motivating forces are clearer.One motivating force is this: There will be people who do not have dementia but who have symptoms or signs that might predict dementia, which cause them concern, whom we might help by early intervention. The intervention might involve advice and support, or it might involve some form of drug treatment; and in the utopia of our dreams, it might involve prevention. All of this is very motivating for clinical scientists. It also offers a laudable motivation to pharmaceutical companies, who simultaneously must have regard to the possibility of profits for their shareholders.Here, however, is an alternative motivation: The effects of aging must not be ignored if help can be given, but older people must not be stigmatized by a medical process that thrusts disabling labels on them. People age, but they age differently, and it is better to recognize difference, both from a biological and from a philosophical perspective. Thus, a passionate commitment to the cause of individual agency in old age and a desire for authentic autonomy for older people provide strong motivation too.At root, then, the conflicting passions over MCI reflect the age-old struggle in the philosophy of psychiatry between the natural sciences (Naturwissenschaften) and the human or cultural sciences (Geisteswissenschaften): the tension is between a tendency to approach the problem with the aim of eliciting a scientific explanation and a tendency to try to achieve a human and cultural understanding of the phenomena (Phillips 2004). So, although MCI can be regarded as an explanatory diagnostic entity with some predictive value, it can also be regarded as a label that might cause harm or as a human phenomenon that requires understanding. Furthermore, MCI raises ontological questions about the nature of disease entities. And there is a wider issue as well about how aging itself should be regarded.From a biological perspective, it turns out there is no clear cutoff between what is normal and what [End Page 1] is not. Hence, in a number of ways, values seem to be as important as facts (Sadler 2005). Perhaps philosophy should content itself with saying no more than this: MCI ought not to be considered or debated as if it lies outside the realm of evaluative judgment. The very possibility of its existence as a clinical entity is a matter worthy of moral and social discourse.The direction of thought indicated here and in the papers that follow, however, is more radical than the easily won point that the "diagnosis" of MCI is not value free. On the back of the biological point, that there is a continuum between physiological and pathological aging, is the broader philosophical point that aging can neither be understood solely in terms of physiology nor in terms of pathology, nor even in terms of both. Ageing represents, inter alia, a social and cultural phenomenon manifest in the context of particular psychological and spiritual responses to a mixture of physiological adaptations and pathological predispositions. Without the broader picture, we tend to characterize old age, as Michael Bavidge has suggested elsewhere, in terms of deteriorations: "We should think of old age as offering alternative rather than impaired ways of experiencing life" (2006, 49). The difficulty is that any diagnosis seems to suggest impairment in one form or another. The radical suggestion, therefore, might be to commend descriptions that encourage shared understanding over and above the giving of names and labels.In a brief critique of the scientific approach to "banal memory disorders and MCI", Jean-Marie Léger, like Bavidge, regrets the extent to which people with cognitive impairment "are described in terms of what they have lost, with no regard for the wealth of faculties which are still present." Léger... (shrink)

Happy cow messages are instances of commercial speech by the animal industry which, by action or by omission, mislead consumers about the harmful effects that the industry has for nonhuman animals, the environment, or human health. Despite their ubiquity, happy cow messages have received little philosophical scrutiny. This paper aims to call attention to this form of speech, and to make the case for its restriction. To do so we first conceptualize happy cow messages. Second, we argue that they encroach (...) upon individual autonomy in two particularly objectionable ways: by impairing our ability to behave according to our moral convictions, and by thwarting our capacity to identify and reason about our moral duties. This, we hold, grounds a pro tanto case for stricter and more comprehensive regulations of commercial speech by the animal industry. Third, and against the objection that restricting happy cow messages would violate freedom of speech, we contend that none of the most influential arguments for free speech grants them protection. Indeed, we suggest, those rationales seem to call for their restriction. Fourth, and finally, we review some possible ways to defuse the misleading potential of happy cow messages through commercial speech regulations. (shrink)

Recent legal developments challenge how valid the concept of mental capacity is in determining whether individuals with impairments can make decisions about their care and treatment. Kong defends a concept of mental capacity but argues that such assessments must consider how relationships and dialogue can enable or disable the decision-making abilities of these individuals. This is thoroughly investigated using an interdisciplinary approach that combines philosophy and legal analysis of the law in England and Wales, the European Court of Human Rights, (...) and the United Nations Convention on the Rights of Persons with Disabilities. By exploring key concepts underlying mental capacity, the investigation concludes that both primary relationships and capacity assessments themselves must display key competencies to ensure that autonomy skills are promoted and encouraged. This ultimately provides scope for justifiable interventions into disabling relationships and articulates the dialogical practices that help better situate, interpret, and understand the choices and actions of individuals with impairments. (shrink)

As research into Alzheimer's disease and other dementing disorders becomes more complex, risky, invasive, and commonplace, the need intensifies for discussion of the ethics of involving persons with dementia in research, specifically research of greater than minimal risk and of no expected direct benefit to the subject. Reviewing such studies pushes our traditional analysis tools to their limits. Simply balancing and prioritizing the basic ethical principles of respect for persons, beneficence, and justice that serves us well in reviewing the vast (...) majority of studies is inadequate when reviewing research of such ethical complexities as studies with marked risks and no expectation of direct benefit to subjects unable to consent or withdraw. Moving up to the level of theory, placing these principles within the commonly applied frameworks of consequentialism, deontology, or virtue ethics bring us no closer to reducing the tensions such research creates between upholding individual autonomy and advancing society's need to learn how to treat and cure these devastating diseases. What is needed is the introduction of more contemporary moral analyses. Specifically, we need to become more inclusive of the diversity of values perspectives of our general citizenry. In more theoretical terms, we ought to elevate to a more central role a communitarian perspective and a feminist ethics emphasis on relationships and context as we rush to keep in step, ethically, with this rapidly expanding area of medical inquiry. (shrink)

Noninvasive prenatal testing promises to enhance women's reproductive autonomy by providing genetic information about the fetus, especially in the detection of genetic impairments like Down syndrome. In practice, however, NIPT provides opportunities for intensified manipulation and control over women's reproductive decisions. Applying Miranda Fricker's concept of epistemic injustice to prenatal screening, this article analyzes how medical professionals impair reproductive decision-making by perpetuating testimonial injustice. They do so by discrediting positive parental testimony about what it is like to raise a (...) child with DS. We argue that this testimonial injustice constitutes a twofold harm: people with DS and their family members who claim that parenting a child with DS may be a rewarding and joyous experience are harmed when they are systematically silenced, disbelieved, and/or denied epistemic credibility by medical professionals, and pregnant women are harmed since they might make poorly informed choices without access to all relevant information. The broader implication of the analysis is that epistemic justice is a precondition of reproductive autonomy. We conclude by calling for federal oversight of the acquisition and dissemination of information that prospective parents receive following a positive diagnosis of DS to ensure that it is comprehensive and up to date. (shrink)

In this paper I consider one effect that disablism has on social interactions between nondisabled and disabled people: the “hidden labor” carried out by disabled people to manage or manipulate the presentation of their impairment to others, and their own and others’ emotional responses, in order to achieve their goals. Although such management may be understood as actively enhancing the disabled person’s autonomous agency, I argue that the cost of this labor to the disabled person and the fact that (...) it must be hidden from the nondisabled partner in order to be effective, create an ethical problem. Such interactions confer a form of autonomy through a connection that is fundamentally distorted by asymmetries of power, knowledge, risk, and is therefore ethically undesirable. (shrink)

Can we measure and predict character with predictive analytics so a business can better assess, ideally objectively, whether to lend money or extend credit to that person, beyond current objective measures of credit scores and standard financial metrics like solvency and debt ratios? We and the analysts probably do not know enough about character to try to measure it, though it might be more useful to measure and predict a person’s temperance and prudence as virtues, or self-control as psychology, or (...) sense of obligation, particularly a moral commitment or sense of duty to honor a contract and re-pay a loan. The pervasive data surveillance of people that goes with “big data” and predictive analytics is not only an invasion of privacy in general, but an impairment of the aspect of privacy called autonomy that will constrict and alter a person’s choices and development of self. (shrink)

The clinical application of the concept of patient autonomy has centered on the ability to deliberate and make treatment decisions to the virtual exclusion of the capacity to execute the treatment plan. However, the one-component concept of autonomy is problematic in the context of multiple chronic conditions. Adherence to complex treatments commonly breaks down when patients have functional, educational, and cognitive barriers that impair their capacity to plan, sequence, and carry out tasks associated with chronic care. The purpose (...) of this article is to call for a two-component re-conceptualization of autonomy and to argue that the clinical assessment of capacity for patients with chronic conditions should be expanded to include both autonomous decision-making and autonomous execution of the agreed-upon treatment plan. We explain how the concept of autonomy should be expanded to include both decisional and executive autonomy, describe the biopsychosocial correlates of the two-component concept of autonomy, and recommend diagnostic and treatment strategies to support patients with deficits in executive autonomy. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Seeking the Everyday Meaning of Autonomy in Neurologic DisordersGeorge J. Agich (bio)The Socratic aphorism that the unexamined life is not worth living and dictums like "Know thyself" remind us of the centrality of self-understanding in the history of philosophical reflections on autonomy. These traditional concerns with autonomy may seem far removed from the neurologic impairments to which Joel Anderson and Warren Lux draw our attention. Nonetheless, (...) Anderson and Lux have provided an important discussion that links the traditional philosophical commitment to self-knowledge with an account that parses these concepts in the context of neurologic disorders. Theirs is a potentially productive approach for improving our understanding of autonomy, one that Emilio Mordini and I advocated in a paper entitled, "Autonomy and the Ethics of Neurosurgery" (Agich and Mordini 1998, 54). We argued that the focus of bioethics on issues such as informed consent misses the more challenging and potentially fruitful collaboration that neurosurgery and neurology affords for advancing the philosophical understanding of the conditions of autonomy. The challenge is in the integration of concepts used in one context of meaning with other domains of discourse. A good example of the challenges embedded in pursuing this kind of project can be found in Anderson and Lux's discussion of the concept of accurate self-assessment.Anderson and Lux argue that accurate self-assessment is a requirement for one to act autonomously. On first hearing, this phrase sounds unsurprising and consistent with standard approaches that assume a higher degree of awareness of one's capacities. Their characterization, however, derives from their observations of cases involving severe neurologic impairments, which point to more basic processes than the reflective awareness or knowledge that is often assumed. Paradoxically, the language of accurate self-assessment sounds remarkably like an intellectual function. It appears to fall squarely within the traditional philosophical tendency to define autonomy in terms of ego-centered, intellectual functions involving relatively high-level reflective capacities. Despite their terminology, Anderson and Lux stress that their account requires a type of reflexivity that is not the same as self-conscious reflection understood in the highest degree. They stress this in a number of places. For example, they see the neurologic concept of executive function as involving basic feedback mechanisms that are "broadly isomorphic with capacities associated [End Page 295] with autonomy;" these include anticipation, goal seeking, planning, initiation, sequencing, monitoring, error detection, self-correction, as well as initiation of novel responses, a clearly heterogenous set of capacities (Anderson and Lux 2004, 285). These capacities are not capacities of the "mind," but basic neurologic functions of the intact embodied agent who is actively engaged in the world. Thus, these concepts capture or express a practical (or clinical) as opposed to a theoretical understanding of the basic conditions or capacities defining autonomy. Similarly, their talk of "self-assessment" does not need to be understood as explicit or conscious; rather, it typically operates in the background (Anderson and Lux 2004). They term this character of self-assessment "mundane" (Anderson and Lux 2004, 289), which strikes me as exactly the right way to characterize this key feature of autonomy (Agich 1995). Their phenomenological and clinically based insights are quite sound, but the reader struggles with a terminology that seems to run in a different direction. To be sure, they stress that they intend their language of "autonomy" and "accurate self-assessment" to involve ordinary, background, and everyday functions that do not require high levels or significant capacities for reflective self-assessment, but their very insistence underscores the problem inherent in this terminology.Anderson and Lux argue that the capacity for self-assessment has a task-relative dimension that requires a degree of "accuracy." They characterize accuracy in a way that may promote rather than forestall misunderstanding. They state that "an adequate degree of precision" (281) is required in such assessment. For example, in assessing whether one is able to jump a hurdle, they say "one must accurately estimate not only the strength of one's legs but also the height of the hurdle" (Anderson and Lux 2004, 281). They further characterize their account of "accuracy" as involving an epistemological externalism, which might lead some readers to assume... (shrink)