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

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

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

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

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

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

The American Journal of Bioethics, Volume 12, Issue 2, Page 30-31, February 2012.

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

In recent years, several studies have advocated the need to expand the concept of patient autonomy beyond the capacity to deliberate and make decisions regarding a specific medical intervention or treatment (decision-making or decisional autonomy). Arguing along the same lines, this paper proposes a multidimensional concept of patient autonomy (decisional, executive, functional, informative and narrative) and argues that determining the specific aspect of autonomy affected is the first step towards protecting or promoting (and respecting) (...) patient autonomy. These different manifestations of autonomy are not mutually dependent; there may be patients who have problems in one dimension, while at the same time being fully autonomous in others. Nevertheless, a close interaction has been observed between the various dimensions and indeed, a phenomenological analysis shows that damage to or a reduction in one aspect of people’s capacity for self-government generally affects other aspects of their autonomy, which in turn disrupts their identity and the way in which they see themselves and are seen by others. In this paper, I shall examine some of these interactions and show how they may lie at the heart of the problem of poor treatment adherence (where adherence is defined as being the extent to which a patient’s behavior over time coincides with the recommendations made by and agreed with their health professional). One example given is that of psoriasis, a chronic skin disease with a very poor adherence record. In Spain, it is calculated that 85% of patients diagnosed with mild to moderate psoriasis fail to comply properly with their treatment, and figures from other parts of the world are similar. Although there are many possible causes for non-adherence among psoriasis patients, assessing their decisional, executive and narrative capacities and taking appropriate action based on the results may help increase adherence rates. (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)

In the wake of recent advancements in the field of AI, this paper investigates the impact of recommender systems and generative models on human decisional and creative autonomy. For this purpose, we adopt Dennett’s conception of autonomy as self-control. We show that recommender systems can play a double role in relation to decisional autonomy: as information filter, they can augment self-control in decision-making, but also act as mechanisms of remote control that clamp degrees of freedom. (...) As for generative models in AI, we show that they can be seen as a powerful system of selection and suggestion (similar to standard recommender systems) but also as an instrument for information production. We suggest that the latter perspective opens new possibilities in terms of creative autonomy. Additionally, for both systems we propose a distinction between “extrinsic” and “intrinsic” mechanisms and effects. Through Dennett’s theory of self-control, this paper offers new insights into the relation between AI and human autonomy by framing it in terms of remote or self-control and by addressing the impact of generative models on creative autonomy. (shrink)

Many ethical concerns have been voiced about Clinical Decision Support Systems (CDSSs). Special attention has been paid to the effect of CDSSs on autonomy, responsibility, fairness and transparency. This journal has featured a discussion between Rosalind McDougall and Ezio Di Nucci that focused on the impact of IBM’s Watson for Oncology (Watson) on autonomy. The present article elaborates on this discussion in three ways. First, using Jonathan Pugh’s account of rational autonomy we show that how Watson presents (...) its results might impact decisional autonomy, while how Watson produces knowledge might affect practical autonomy. Second, by drawing an analogy with patient decision aids we identify an empirical way of estimating Watson’s impact on autonomy (ie, value-congruence). Lastly, McDougall introduced the notion of value-flexible design as a way to account for the diverging preferences patients hold. We will clarify its relation with the established domain of value-sensitive design. In terms of the tripartite methodology of value-sensitive design, we offer aconceptualclarification using Pugh’s account of rational autonomy, anempiricaltool to evaluate Watson’s impact on autonomy and situate a group oftechnicaloptions to incorporate autonomy in Watson’s design. (shrink)

Autonomy is a fundamental though contested concept both in philosophy and the broader intellectual culture of today’s liberal societies. For instance, most of us place great value on the opportunity to make our own decisions and to lead a life of our own choosing. Yet, there is stark disagreement on what is involved in being able to decide autonomously, as well as how important this is compared to other commitments. For example, the success of every group project requires that (...) group members make decisions about the project collectively rather than each on their own. This disagreement notwithstanding, mental disorder is routinely assumed to put a strain on autonomy; however, it is unclear whether this is effectively the case and, if so, whether this is due to the nature of mental disorder or the social stigma that often attaches to it. This book is the first exploration of the nature and value of autonomy with reference to mental disorder. By reflecting on instances of mental disorder where autonomy is apparently compromised, it offers a systematic discussion of the underlying presuppositions of the present autonomy debates in philosophy and psychiatry. In so doing, it helps address different kinds of emerging scepticism questioning either the appeal of autonomy as a concept or its relevance to specific areas of normative ethics, including psychiatric ethics. (shrink)

This paper explores and rehabilitates the value of decisional privacy as a conceptual tool, complementary to informational privacy, for critiquing personalized choice architectures employed by self-tracking technologies. Self-tracking technologies are promoted and used as a means to self-improvement. Based on large aggregates of personal data and the data of other users, self-tracking technologies offer personalized feedback that nudges the user into behavioral change. The real-time personalization of choice architectures requires continuous surveillance and is a very powerful technology, recently coined (...) as “hypernudging.” While users celebrate the increased personalization of their coaching devices, “hypernudging” technologies raise concerns about manipulation. This paper addresses that intuition by claiming that decisional privacy is at stake. It thus counters the trend to solely focus on informational privacy when evaluating information and communication technologies. It proposes that decisional privacy and informational privacy are often part of a mutually reinforcing dynamic. Hypernudging is used as a key example to illustrate that the two dimensions should not be treated separately. Hypernudging self-tracking technologies compromise autonomy because they violate informational and decisional privacy. In order to effectively judge whether technologies that use hypernudges empower users, we need both privacy dimensions as conceptual tools. (shrink)

The patient preference predictor is a computer-based algorithm devised to predict the medical treatment that decisionally incapacitated patients would have preferred. The target paper argues against various criticisms to the effect that the use of a PPP is inconsistent with proper respect for patient autonomy.1 In this commentary, I aim to add some clarifications to the complex relationship between autonomy and the PPP. First, I highlight one way in which the decision of a surrogate designated by the patient (...) realises respect for patient autonomy in a way that PPP cannot realise by introducing the idea of shared agency. Second, I show how the attempt to predict someone’s hypothetical choice can be disrespectful to her autonomy. Following the treatment decision of a surrogate designated by the patient counts as a way of respecting the patient’s own autonomy. Designating someone as one’s surrogate is a case of entrusting her with the task of making important life decisions on one’s behalf. To entrust someone with a certain matter is to assign her the responsibility for that matter based on the trust that she will take a good care of it. When a patient entrusts a surrogate decision-maker, what is the matter that she is trusted to take a good care of? In many contexts, the surrogate is r egarded as an epistemic proxy, one who is likely to know the patient’s preferences the best. It is often thought that the point of practising surrogate decision making is to respect the patient’s autonomy by following what the patient most likely would have preferred. Using a PPP in the decision-making process has the same goal of making a more accurate prediction of the patient’s treatment preference. However, at least in some cases, designating the patient’s intimates or ones she loves and cares …. (shrink)

The patient preference predictor is a proposed computer-based algorithm that would predict the treatment preferences of decisionally incapacitated patients. Incorporation of a PPP into the decision-making process has the potential to improve implementation of the substituted judgement standard by providing more accurate predictions of patients’ treatment preferences than reliance on surrogates alone. Yet, critics argue that methods for making treatment decisions for incapacitated patients should be judged on a number of factors beyond simply providing them with the treatments they would (...) have chosen for themselves. These factors include the extent to which the decision-making process recognises patients’ freedom to choose and relies on evidence the patient themselves would take into account when making treatment decisions. These critics conclude that use of a PPP should be rejected on the grounds that it is inconsistent with these factors, especially as they relate to proper respect for patient autonomy. In this paper, we review and evaluate these criticisms. We argue that they do not provide reason to reject use of a PPP, thus supporting efforts to develop a full-scale PPP and to evaluate it in practice. There are no data in this work. (shrink)

Agency is the human capacity to freely choose one’s thoughts, motivations and actions without undue internal or external influences; it is distinguished from decisional capacity. Four well-known conditions that can deeply affect agency are depression, demoralization, existential distress, and family dysfunction. The study reviews how they may diminish agency in persons whose circumstances may lead them to consider or request euthanasia or assisted suicide. Since agency has been a relatively neglected dimension of autonomous choice at the end of life, (...) it is argued that to respect the autonomy of individuals, it is essential to establish their agency. (shrink)

Background: Autonomy is a central concept in both bioethics and rehabilitation. Bioethics has emphasized autonomy as self-governance and its application in treatment decision-making. In addition to discussing decisional autonomy, rehabilitation also focuses on autonomy as functional independence. In practice, responding to patients with diminished autonomy is an important component of rehabilitation care, but also gives rise to tensions and challenges. Our objective was to better understand the complex and distinctive ways that autonomy is (...) understood and upheld in the context of rehabilitation care by reviewing how autonomy is discussed in the rehabilitation literature. Methods: We conducted a scoping review addressing issues of autonomy in the context of mental and physical rehabilitation. Our process followed three sequential steps. We extracted and analyzed bibliometric information. We then examined how autonomy was defined and conceptualized. Finally, we examined how the articles discussed the roles of rehabilitation health professionals in responding to patient autonomy. Findings: The articles include 16 empirical reports, 17 case studies and 30 theoretical papers. The most common conceptual accounts of autonomy drew upon principlism, rights-based and legal analyses, and relational/social approaches. We identified four broad approaches for responding to patient autonomy: supporting, promoting, respecting and advocating. Conclusion: This review helps clarify some of the ambiguities and conceptual distinctions underlying discussions and practices related to autonomy in rehabilitation. It also draws attention to a wide range of activities that health professionals can undertake with the goal of supporting, promoting, respecting and advocating for patient autonomy in rehabilitation care. (shrink)

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)

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

This section welcomes submissions addressing literature as a means to explore ethical issues arising in healthcare. “Literature” will be understood broadly, including fiction and creative nonfiction, illness narratives, drama, and poetry; film studies might be considered if the films are adaptations from a literary work. Topics include in-depth analysis of literary works as well as theoretical contributions, discussions, and commentary about narrative approaches to disease and medicine, the way literature shapes the relationship between patients and healthcare professionals, the role of (...) speculative fiction as a testing ground for future scenarios in healthcare, and so on. Articles discussing the uses of literature for bioethics education and outreach will be particularly appreciated. Research on literature not originally written in English will be considered as long as it has also been published in translation. Submissions should include an abstract and should conform to theCQGuidelines for Contributors. To submit an article or discuss a suitable topic, write to Antonio Casado da Rocha [email protected].:This article proposes a concept of narrative autonomy to supplement existing accounts in healthcare ethics. This is done by means of a comparison between three end-of-life scenarios: Tolstoy’sThe Death of Ivan Ilyichand two related contemporary stories by Lorrie Moore and Bernhard Schlink, which explore some problems arising when extremely individualistic notions of patient autonomy are put into practice. It is argued that the best model for palliative care is a cooperative one in which patient autonomy is understood as essentially social, and that involves decisional, executive, informational, and narrative dimensions. (shrink)

Background: While being prepared for abortions, some women experience decisional ambivalence during their encounters with health personnel at the hospital. Women’s experiences with these encounters have rarely been examined. Objective: The objective of this study was to explore ambivalent abortion-seeking women’s experiences of their encounters with health personnel. Research design: The data were collected in individual interviews and analysed with dialogical narrative analyses. Participants and research context: A total of 13 women (aged 18–36 years), who were uncertain of whether (...) to terminate their pregnancies during the first trimester, were interviewed before and after they made their decisions. The participants were recruited at six Norwegian outpatient clinics. Ethical considerations: Approval was granted by the Regional Committee for Medical and Health Research Ethics. Findings: The ambivalent pregnant women sought to make autonomous decisions while simultaneously involving their closest confidants and health personnel in the process. The following three types of narratives of women’s experiences with encounters with health personnel were identified: the respected women; the identified women; and the abandoned women. Discussion: The findings are discussed in terms of the ambivalent pregnant woman’s autonomous responsibility in considering an abortion and how her autonomy can be enabled or impaired during encounters with health personnel. Conclusion and implication: Although the women considered themselves autonomous and responsible for their final decisions, they wished health personnel were involved in their situations. The health personnel contributed by enabling or disabling the possibility of decision-making in accordance with the women’s values. The findings indicate that health personnel who care for women considering abortions must be trained in dialogical competence. (shrink)

A child is a developing person with evolving capacities that include autonomy, mental capacity and capacity to assume responsibility. Hence, children are entitled to participatory rights in South Africa as observed in the Children’s Act 38 of 2005. According to section 129 of the Act a child may consent to his or her own medical treatment provided that he or she is over the age of 12 years and is of sufficient maturity and decisional capacity to understand the (...) various implications of the treatment including the risks and benefits thereof. However, the Act does not provide a definition for what qualifies as ‘sufficient maturity’ nor does it stipulate how health professionals ought to assess the decisional capacity of a child. In addition, South Africa is a culturally diverse country. The Western liberal notion of autonomy may not necessarily find equal prominence in the mores of people with a different worldview. Hence we demonstrate a few salient comparisons between legal liberal moral theory and African communitarianism as pertinent to the autonomy of the child. Children are rights-holders by virtue of their humanity. Their dignity as individual human persons affords them the entitlement to human rights as contemplated under the Constitution of the Republic of South Africa. However, contrary to the traditional Western notion of individual autonomous persons African societies hold a communalistic notion of person hence there is less regard for individual autonomy and rights with more emphasis on the communal good and maintaining the continuity of relationships and interdependencies shared within a community. A child considered in this view is not regarded as a full person. This implies that decisions concerning the child, including consent to medical treatment are discussed and determined by the community to which the child belongs. Lastly, in this article, we draw on the notion of capacity for responsibility to produce a pragmatic definition of sufficient maturity. It seems reasonable to suggest a move away from a general legal age of consent for medical treatment toward more individualised, context-specific approaches in determining the maturity of a child patient to consent to medical treatment. Perhaps, decision-making with respect to consent to the medical treatment of a child belonging to a traditional African community where the notion of a person is embedded in communitarianism ought to involve the child’s parents/guardians/caregivers where possible provided that the best interests of the child are awarded priority. (shrink)

Although autonomy is clearly still the paradigm in bioethics, there is increasing concern over its value and feasibility. In agreeing with those concerns, I argue that autonomy is not just a status, but a skill, one that must be developed and maintained. I also argue that nearly all healthcare interactions do anything but promote such decisional skills, since they rely upon assent, rather than upon genuinely autonomous consent. Thus, throughout most of their medical lives, patients are socialised (...) to be heteronomous, rather than autonomous. Yet, at the worst possible time – critical care decision-making – when life and death consequences are attached to the choices, the paradigm shifts and real consent is sought, even demanded, thereby making an often traumatic situation even harder.I go on, though, to also reject paternalistic models of beneficence as an alternative. Rather, I conclude that the problem is so fundamental in healthcare that a genuine solution would require a radical restructuring. I recommend steps that can be taken in the interim to improve the situation and to move toward such a restructuring. (shrink)

Promoting patient autonomy has become a key imperative in health service encounters. We will examine the potential negative effects of over-promoting patient autonomy and consider the impact on patient access, their experience and the provision of equitable services by focusing on an extreme manifestation of this trend, i.e. calls for patient involvement in health care decision making to be mandatory. Advocates of mandatory autonomy hold that patients have a duty to themselves, to society and to the medical (...) system to make decisions on their health care independently. Models of mandatory autonomy may be contrasted to those of optional autonomy that seek to ascertain patients’ decisional preferences and to understand wider limitations on their freedom to choose. Where choice as decisional responsibility becomes mandatory it ceases to promote agency and where autonomous choice is understood as an individualistic practice it will contribute to the cultural dominance of Western values. Moreover, taking a view that principlist ethics needs to take account of the social and cultural contexts of individual lives, we argue that if mandatory autonomy were to be over-emphasised as part of an ongoing move towards patient choice in UK National Health Service (NHS), educated and affluent people would be more able to exercise choices at the expense of people who are experienced in asserting preferences and who have the resources to make use of choices. We will argue that the promotion of autonomy needs to be tempered by steps to enable less powerful social, cultural and economic groups to contribute to decision making and to support individuals who may feel abandoned by having decisional responsibility transferred to them. Until constraints on individual choice can be understood and addressed, we advocate the model of optional autonomy used in shared decision making and make recommendations for practice, policy, education and research. (shrink)

Respect for patient autonomy is paramount in resolving ethical tensions in end-of-life care. The concept of relational autonomy has contributed to this debate; however, scholars often use this concept in a fragmented manner. This leads to partial answers on ascertaining patients’ true wishes, meaningfully engaging patients’ significant others, balancing interests among patients and significant others, and determining clinicians’ obligations to change patients’ unconventional convictions to enhance patient autonomy. A satisfactory solution based on relational autonomy must incorporate (...) patients’ competence (apart from decisional capacity), authenticity (their true desires or beliefs) and the involvement level of their significant others. To that end, we argue that John Christman’s procedural approach to relational autonomy provides critical insights, such as the diachronic or socio-historical personhood, sustained critical reflection and his recent explication of the nature of asymmetrical relationships and helpful interlocutors. This study reviews Christman’s account, proposes minor modifications and advocates for an integrated three-dimensional model for medical decision-making. Clarifying the relationship among the three elements promotes an ethical framework with a coherent understanding of relational autonomy. This model not only provides a descriptive and normative framework for end-of-life care practice but also reconsiders the nature of the clinician–patient relationship and its normative implications. We further present a case study to illustrate the merits of our proposed model. Altogether, our proposal will help navigate complex medical decision-making, foster trust and negotiate shared values between patients and their significant others, particularly in end-of-life care. (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)

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

Often-cited papal pronouncements regarding organ donation emphasize the importance of gift giving and the consent of the donor. However, a critical reading reveals an ill-defined separation of living organ donation and donation after death. Given that a corpse cannot engage in gift giving, nor can it give consent, the family, acting as good stewards, is the proper decision maker for organ donation after death. A historical examination of relics and human anatomical dissection reveals that the Catholic Church has primarily favored (...) the decisional authority of the family over the first-person consent of the dead. Given this history, family-based consent (as opposed to opt-in or opt-out criteria) is the best model to ensure the dignity of the dead. (shrink)

This paper presents a reconceptualization of autonomy as the iterative realization of one’s capacity for “effective self-definition,” that is, possessing a sense of clarity and coherence in “who I am,” and exercising the decisional and volitional ownership over my life that this engenders. This process is “Relational,” wherein people’s interpersonal interactions have a deep and pervasive influence on their ability to recognize and exercise their autonomous capacities. This Relational understanding of autonomy is contextualized within the field of (...) addiction rehabilitative practice. Addiction is a pathology that progressively and insidiously undermines autonomy – producing a number of negative consequences that present themselves along a “continuum of pervasiveness.” In order to most fully foster rehabilitation, therapeutic alliances should to be attentive to facilitating autonomy’s dialogical antecedents. Here, interpersonal recognition can help clients to more fully recognize their own autonomous resources – enabling them to embark on their rehabilitative journey and achieve broader autonomous living. This paper concludes by proposing ways that practitioners can manifest their recognition of their clients’ autonomy within the therapeutic encounter. (shrink)

Pickering, Newton-Howes, and Young assert that the traditional view of decisional capacity, premised on assessing patients’ abilities to communicate, understand, appreciate,...

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical setting remain (...) understudied. However, the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (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)

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

Accepted standards of parental decisional autonomy and child best interests do not address adequately the complex moral problems involved in the care of critically ill children. A growing body of moral discourse is calling for the recognition of `tragedy' in selected human problems. A tragic dilemma is an irresolvable dilemma with forced terrible alternatives, where even the virtuous agent inescapably emerges with `dirty hands'. The shift in moral framework described here recognizes that the form of conduct called for (...) by tragic dilemmas is the practice of phronesis. The phronetic agent has acquired a capacity to discern good agency in tragic circumstances. This discernment is practiced through the artful creation of moral narratives: stories that convey that which is morally meaningful in a particular situation; that is, stories that are `meaning making'. The phronetic agent addresses tragic dilemmas involving children as a narrator of contextualized temporal embodied human (counter)stories. (shrink)

When mature minors face a decision with important consequences, such as whether to undergo a risky but potentially life-saving medical procedure, who should decide? Relying on liberal political theory’s account of the importance of decisional autonomy for adults, and given the scalar nature of the capacities needed to exercise decisional autonomy, I argue that mature minors with the requisite capacities and commitments have a right to decisional autonomy though they are not yet 18. I (...) argue for this right using a ‘balancing of interest’ account of rights: the interest mature minors have in decisional autonomy outweighs their parents’ interest in shaping their children as a means of ‘creative self-extension’. But I propose two limitations on this right: requests for waivers of the rule that one must be at least 18 to decide cannot be so numerous as to make adjudication impractical; and though a competent adult’s voluntary decision to refuse medical treatment should generally be respected, the state may reject a mature minor’s decision upon review by an indifferent judge of the minor’s capacities and reasons. The judge reviews not the substantive merits or prudence of the decision, but whether the decision promotes the interest in decisional autonomy, by asking among other things whether the decision is the minor’s own, is tethered to core commitments rather than based on arbitrary preferences, and could be regarded as reasonable to the minor’s ‘future self’. (shrink)

Definiton of the problem: The current literature concerning the topic of ”informed consent” confronts physicians with a growing demand for extended and sophisticated disclosure duties. Often enough they hardly seem to be feasible, not least because of an actual lack of personnel and time. The problem is to find a realisable way to balance these theoretical and practical considerations. Arguments: The fundamental idea of the concept presented here consists of using the difficulty of a certain decision as standard for determining (...) the required extent of the patient’s actual decisional autonomy. As the prominent aspect of this difficulty of decision-making, the occurrence of conflicting values – termed ”value concurrence”– is identified. Conclusion: Structuring physician-patient-communication in accordance with this ”value-concurrence” should prove to be applicable in the clinical context without neglecting important ethical reflections. (shrink)

The development of genomic technologies has seemed almost magical. Excitement about it, both in medicine and among the public, stems from the belief that genomic techniques will illuminate the causes of health and disease, will lead to effective interventions for both rare and common genetic conditions, and will inform reproductive decision‐making. Novel diagnostic tools, however, are often deployed before targeted therapies are developed, tested, or available and before their psychosocial implications are explored. Newer technologies such as prenatal whole exome screening (...) are seen as offering “decisional autonomy” to expectant parents, although such technologies identify information about genetic sequencing that may not have clear meaning. The “therapeutic gap” between the ability to conduct genetic sequencing and the ability to fully understand what the test results mean, much less what treatments to offer, leaves families with complex and unclear information they cannot act upon with confidence during pregnancy. In this essay, we will consider the psychosocial and ethical implications of such assumptions—and of the uncertain information produced by these technologies—for individuals and families and for societal aspects such as medical service usage and demographic inequities. (shrink)

In times of person-centered care, it is all the more important to support patients in making good decisions about their care. One way to offer such support to patients is by way of Patient Decision Aids (PDAs). Ranging from patient brochures to web-based tools, PDAs explicitly state the decisions patients face, inform them about their medical options, help them to clarify and discuss their values, and ultimately make a decision. However, lingering discussions surround effectiveness research on PDAs. In this article, (...) I focus on two subjective measures of decision quality that are widely used as outcome measures in effectiveness research on PDAs (i.e., the Decisional Conflict Scale (DCS) and measures of regret). Although these measurement instruments have attracted critical attention in the scientific literature, bioethicists have hardly engaged with them. Therefore, I set myself to analyze the relationship between (the different subscales of) the DCS and measures of regret, on the one hand, and ethical principles such as beneficence and autonomy, on the other hand. In light of that analysis, I will clarify some discussions regarding the use of these measures of decision quality in effectiveness research on PDAs. This should help us to align the way we evaluate PDAs with ethical principles and avoid that our attempts to support patients in making good decisions about their care that is so central to person-centered care point in unethical directions. (shrink)

Mill didn't resolve this puzzle: if prostitution must be tolerated according to his principle of liberty as it doesn't non-consensually harm others, why punish the accessory – the pimp? Yet in On Liberty's passage on pimps (CW 18:296–7) Mill seriously considers restricting pimps’ speech for reasons other than preventing harm: pimps’ speech undermines decisional autonomy for purposes the state regards as immoral, and in response the state may use coercion to counteract such immoral influences. In light of this, (...) I argue that we need to rethink the standard view that Mill opposes restrictions on speech that does not harm others. (shrink)

BackgroundResearchers conducting community-based participatory action research (CBPAR) in highly collectivistic and socioeconomically disadvantaged community settings in sub-Saharan Africa are confronted with the distinctive challenge of balancing universal ethical standards with local standards, where traditional customs or beliefs may conflict with regulatory requirements and ethical guidelines underlying the informed consent (IC) process. The unique ethnic, socioeconomic, and cultural diversities in these settings have important implications for the IC process, such as individual decisional autonomy, beneficence, confidentiality, and signing the IC (...) document.Main textDrawing on insights and field observations from conducting CBPARs across several rural, highly communal, low literate, and low-income communities in Ghana, we discuss some theoretical, ethico-cultural, and methodological challenges associated with applying the universal, Western individualistic cultural value-laden IC process in sub-Saharan Africa. By citing field situations, we discuss how local cultural customs and the socioeconomic adversities prevalent in these settings can influence (and disrupt) the information disclosure process, individual decisional authority for consent, and voluntariness. We review the theoretical assumptions of the Declaration of Helsinki’s statement on IC and discuss its limitations as an ultimate guide for the conduct of social science research in the highly communal African context. We argue that the IC process in these settings should include strategies directed at preventing deception and coercion, in addition to ensuring respect for individual autonomy. We urge Universities, research institutions, and institutional review boards in Africa to design and promote the use of context-appropriate ethical IC guidelines that take into consideration both the local customs and traditional practices of the people as well as the scientific principles underpinning the universal IC standards.ConclusionWe recommend that, rather than adopt a universal one-size-fits-all IC approach, researchers working in the rural, highly collectivistic, low literate, socioeconomically disadvantaged settings of sub-Saharan Africa should deeply consider the roles and influence of cultural values and traditional practices on the IC and the research process. We encourage researchers to collaborate with target communities and stakeholders in the design and implementation of context-appropriate IC to prevent ethics dumping and safeguard the integrity of the research process. (shrink)

A guest edited volume of the Journal of Applied Philosophy devoted to topics regarding the ethics of nudges, particularly those that have received little or no treatment up to now. Since the publication of Nudge in 2008, nudges have become widely used tools in policymakers' toolbox. Concurrently, ethicists have discussed which conditions, if any, ensure the fair and ethically legitimate implementation of such untraditional policy techniques. The debates have focused primarily on the alleged intrusiveness of nudges and their lack of (...) factual transparency. The special issue is intended to enrich the debate in the conviction that the clarity of the terms adopted within the debate could be improved and that some relevant ethical perspectives have been left out in assessing the morality of nudges. Specifically, the aims of this special issue are twofold, normative and conceptual. On the one side, we delve into the concepts on which the evaluation of nudging hinges, such as "preferences", "resistibility", and "libertarianism". Since the meanings assigned to such concepts drive our evaluation of nudging, their comprehension is critical. On the other side, the acceptability of nudges has been extensively assessed in the light of ethical theories developed within Western philosophy, and not with alternative but promising ethical frameworks from the Global South. Relatedly, some values implicated in nudging, such as the ethics of nudging vulnerable populations, have been overshadowed by scholars' attention to decisional autonomy. The special issue gives these themes the attention they deserve. (shrink)

Recent accounts support the existence of two distinct feelings of guilt: altruistic guilt (AG), arising from the appraisal of not having been altruistic toward a victim and deontological guilt (DG), emerging from the appraisal of having violated an intuitive moral rule. Neuroimaging data has shown that the two guilt feelings trigger different neural networks, with DG selectively activating the insula, a brain area involved in the processing of disgust and self-reproach. Thus, insula activation could reflect the major involvement of self-reproach (...) in DG rather than in AG. However, only a few studies have empirically tested whether and how DG and AG differently affect decision making and none have compared enhanced self-worth. Here we asked three groups of participants, respectively, induced with either pride, DG or AG, to participate in a third-party version of the ultimatum game in which they were asked to decide on behalf of others to accept or reject economic offers with several degrees of fairness. Results revealed that only deontological participants had higher median acceptances of Moderately Unfair offers as compared to proud participants. However fairness judgments were not different between groups, suggesting that deontological participants’ moral standards had not decreased. Crucially, a higher increase in DG was associated with an increase in the odds of accepting 30:70 offers. The opposite effects that DG and pride exert on self-worth can account for these results. Specifically, proud participants felt entitled enough to take action in order to restore equity, while deontological participants followed the “Do not play God” principle, which limited their decisional autonomy, not allowing them to decide on behalf of others. (shrink)

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

Standard views on surrogate decision making present alternative ideal models of what ideal surrogates should consider in rendering a decision. They do not, however, explain the physician''s responsibility to a patient who lacks decisional capacity or how a physician should regard surrogates and surrogate decisions. The authors argue that it is critical to recognize the moral difference between a patient''s decisions and a surrogate''s and the professional responsibilities implied by that distinction. In every case involving a patient who lacks (...) decisional capacity, physicians and the treatment team have to make judgments about the appropriateness of both the surrogate and the surrogate''s decision. They have to assess the surrogate''s decisional capacity and attitude toward the patient as well as the reasons that support the surrogate''s decision. This paper provides a model for acceptable surrogate decisions and a standard for blocking inappropriate surrogates. Only decisions based on widely shared reasons are allowable for surrogate refusal of highly beneficial treatment. (shrink)

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

Patient autonomy, as exercised in the informed consent process, is a central concern in bioethics. The typical bioethicist's analysis of autonomy centers on decisional capacity—finding the line between autonomy and its absence. This approach leaves unexplored the structure of reasoning behind patient treatment decisions. To counter that approach, we present a microeconomic theory of patient decision-making regarding the acceptable level of medical treatment from the patient's perspective. We show that a rational patient's desired treatment level typically (...) departs from the level yielding an absence of symptoms, the level we call ideal. This microeconomic theory demonstrates why patients have good reason not to pursue treatment to the point of absence of physical symptoms. We defend our view against possible objections that it is unrealistic and that it fails to adequately consider harm a patient may suffer by curtailing treatment. Our analysis is fruitful in various ways. It shows why decisions often considered unreasonable might be fully reasonable. It offers a theoretical account of how physician misinformation may adversely affect a patient's decision. It shows how billing costs influence patient decision-making. It indicates that health care professionals' beliefs about the ‘unreasonable’ attitudes of patients might often be wrong. It provides a better understanding of patient rationality that should help to ensure fuller information as well as increased respect for patient decision-making. (shrink)

In this case report, we describe a woman with advancing dementia who still retained decisional capacity and was able to clearly articulate her request for deactivation of her implanted cardiac pacemaker—a scenario that would result in her death. In this case, the patient had the autonomy to make her decision, but clinicians at an outside hospital refused to deactivate her pacemaker even though they were in unanimous agreement that the patient had capacity to make this decision, citing personal (...) discomfort and a belief that her decision seemed out of proportion to her suffering. We evaluated her at our hospital, found her to have decision-making capacity, and deactivated her pacer resulting in her death about 9 days later. While some clinicians may be comfortable discussing patient preferences for device deactivation in patients who are imminently dying, we can find no reports in the literature of requests for device deactivation from patients with terminal diagnoses who are not imminently dying. (shrink)