The question of decision-making capacity for informed consent to experimental brain surgery for severely ill anorectic patients is about as dramatic an ethical issue one can imagine. Sabine Müller and her co-authors (2015) should be commended for this extremely timely and original clinical and ethical discussion of decision-making capacity in relation to the issues raised by informed consent to such therapies. It is not only the therapies themselves that are innovative in this discussion, but also the overall theoretical approach taken (...) to decision-making capacity and informed consent. Even the understanding of anorexia nervosa is novel. The ethical stakes are certainly very high, since by some measures this is the deadliest off all mental disorders... (shrink)

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

BackgroundGeneral practitioners often act as gatekeeper, authorizing patients’ access to hospital care. This gatekeeping role became even more important during the current COVID-19 crisis as uncertainties regarding COVID-19 made estimating the desirability of hospital referrals (for outpatient or inpatient hospitalization) complex, both for COVID and non-COVID suspected patients. This study explored Dutch general practitioners’ experiences and ethical dilemmas faced in decision making about hospital referrals in times of the COVID-19 pandemic.MethodsSemi-structured interviews with Dutch general practitioners working in the Netherlands were (...) conducted. Participants were recruited via purposive sampling. Thematic analysis was conducted using content coding.ResultsFifteen interviews were conducted, identifying four themes: one overarching regarding (1) COVID-19 uncertainties, and three themes about experienced ethical dilemmas: (2) the patients’ self-determination vs. the general practitioners’ paternalism, (3) the general practitioners’ duty of care vs. the general practitioners’ autonomy rights, (4) the general practitioners’ duty of care vs. adequate care provision.ConclusionsLack of knowledge about COVID-19, risks to infect loved ones, scarcity of hospital beds and loneliness of patients during hospital admission were central in dilemmas experienced. When developing guidelines for future crises, this should be taken into account. (shrink)

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

The VOICES study involved at least one radical move in the decades-old debates about attention deficit hyperactivity disorder diagnosis and stimulant drug treatments: to systematically investigate young people's perspectives and experiences so that these could be included as evidence in social, ethical and policy deliberations about the benefits and risks of these interventions. The findings reported in this article were both surprising and unsurprising to us as researchers. We were surprised at the consistency of children's positive responses to stimulant medication, (...) and at the robustness of the experience of increased capacity for moral agency with medication. We were unsurprised at the insights many young people have into their own behaviours and that of others.I am hopeful that the perspectives of children reported in this article will inspire a fresh public conversation about the ethics of stimulant drug treatments, as well as further research with children. In order to believe that children's perspectives add something new and valuable to the social discourse, one must first view children as capable of reliably reporting their own experiences as part of a well-designed research study. It seems that Steven Rose does …. (shrink)

According to a standard account of patient decision-making capacity, patients can provide ethically valid consent or refusal only if they are able to understand and appreciate their medical c...

This paper discusses the findings of qualitative research that examined the accounts of five “mostly recovered” ex-patients who had experienced transition between two or more eating disorder diagnoses. This study found that, in the minds of participants, the different diagnostic labels were associated with various good or bad character traits. This contributed to the belief in a diagnostic hierarchy, whereby individuals diagnosed with anorexia nervosa were viewed as morally better than those diagnosed with bulimia nervosa or binge eating disorder. Consequently, (...) diagnostic crossover from a “better” to a “worse” eating disorder was often experienced as shameful moral failing, and a new diagnosis impacted the individual’s sense of self-identity. These findings are of significance for both ethicists and clinicians; the paper concludes by outlining the relevance and possible clinical implications of shame in diagnostic crossover and suggesting avenues for future research. (shrink)

Müller and colleagues (2015) address a range of ethical considerations associated with neurosurgical interventions for the treatment of anorexia nervosa (AN), arguing for several protective measures to safeguard clinical research and practice. This is an important article, which provides a thorough review of current neurosurgical research and presents key insights into challenges associated with compromised decision-making capacities in the context of AN and the early average age of onset. However, it is somewhat striking that they neither use nor examine the (...) concept of authenticity. We describe the way this concept features in discussions of AN, and suggest that a deeper understanding of authenticity reveals further ethical problems that Müller and colleagues do not consider. (shrink)

Existing phenomenological accounts of anorexia nervosa suggest that various forms of bodily alienation and distorted bodily self-consciousness are common among subjects with this condition. Subjects often experience a sense of distance or estrangement from their body and its needs and demands. What is more, first-person reports and existing qualitative research reveal struggles with authenticity and a search for identity. Is there a connection between the two? I argue that to gain a fuller understanding of anorexia nervosa, how it is experienced (...) by subjects, and why many of them express concerns about authenticity, we need to look more closely at their experiences of bodily alienation and the ways in which they encounter a diminished sense of bodily ownership. After presenting a general overview of the various sorts of bodily alienation that appear to be characteristic of anorexia nervosa, I outline three conceptions of authenticity and introduce some empirical evidence indicating that many subjects with this condition have concerns about identity and authenticity. Then, I examine how different sorts of bodily alienation have the potential to compromise authenticity at various stages of the disorder. Throughout, I draw from several first-person accounts of anorexia nervosa to illustrate and support my claims. (shrink)

The debate about how neurotechnologies impact authenticity has focused on two inter-related dimensions: self-discovery and self-creation. In this paper, we develop a broader framework that includes the experimental and relational dimensions of authenticity, both understood as decisive for shaping one’s narrative identity. In our view, neurointerventions that alter someone’s personality traits will also impact her very own self-understanding across time. We argue that experimental authenticity only needs a minimum conception of narrative coherence of the self and that reversibility should remain (...) a key feature in the ethical assessment of neurotechnologies. The relational dimension of authenticity derives from the fact that a process of self-constitution is never a solitary business. The significant others act not just as subsequent judges of one’s life decisions, but as real co-authors of one’s self. We discuss relevant cases in which others are actively contributing to the meaning-making process, as to the direction one’s life is taking. We also claim that the experimental and the relational dimensions of authenticity should aim to correct each other. The relational dimension introduces socially approved standards as well as limitations to the array of available possibilities of self-fashioning or human enhancement. The experimental side enables us to avoid confusing one’s personal identity with a social and narrative construct that only bears the mark of social pressure and conformism. (shrink)

ver since the traditional criteria for medical decision-making capacity (understanding, appreciation, reasoning, evidencing a choice) were formulated, they have been criticized for not taking sufficient account of emotions or values that seem, according to the critics and in line with clinical experiences, essential to decision-making capacity. The aim of this paper is to provide a nuanced and structured overview of the arguments provided in the literature emphasizing the importance of these factors and arguing for their inclusion in competence evaluations. Moreover, (...) a broader reflection on the findings of the literature is provided. Specific difficulties of formulating and measuring emotional and valuational factors are discussed inviting reflection on the possibility of handling relevant factors in a more flexible, case-specific, and context-specific way rather than adhering to a rigid set of operationalized criteria. (shrink)

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

Self-illness ambiguity is a difficulty to distinguish the ‘self’ or ‘who one is’ from one's mental disorder or diagnosis. Although self-illness ambiguity in a psychiatric context is often deemed to be a negative phenomenon, it may occasionally have a positive role too. This paper investigates whether and in what sense self-illness ambiguity could have a positive role in the process of recovery and self-development in some psychiatric contexts by focusing on a specific case of mental disorder – anorexia nervosa.

ABSTRACT‘If I experience X, is it because of the illness, the medication, or is it ‘just me’?’ (Karp 2009) [Is it me or my Meds? Living with Antidepressants. Harvard University Press]. This issue is known as self-illness ambiguity (SIA) (Sadler 2007) ["The Psychiatric Significance of the Personal Self." Psychiatry: Interpersonal and Biological Processes 70 (2): 113–129]. In her paper Know Thyself: Bipolar Disorder and Self-concept, Carls-Diamante (2022) [“Know Thyself: Bipolar Disorder and Self-Concept.” Philosophical Explorations, 1–17] offers a taxonomy of different (...) ways in which Bipolar Disorder can be related to one’s self and self-concept. In contrast to the essentialist model of mental disorders she seems to adopt, I propose a different outlook on SIA, following an enactive approach to psychiatric disorders as disorders of sense-making. One’s way of making sense of the world and/or oneself can become stuck in a rigid pattern that is stronger than oneself and at odds with how one would want to be. I argue that it is helpful to distinguish between the experiential SIA of specific experiences (Am I over/underreacting?) and the long term concerns of existential SIA (How to live my life in accordance with what matters to me despite/while having certain vulnerabilities?). I conclude that knowing oneself is not an intra-individual matter, nor primarily a matter of reflection: it is rather a relational and material practice of trying to live your life in accordance with what matters to you. (shrink)

New neural models for anorexia nervosa are emerging as a result of increased research on the neurobiology of AN, and these offer a rationale for the development of new treatment technologies such as neuromodulation. The emergence of such treatment technologies raises new ethical questions; however these have been little discussed for AN. In this article, I take an empirical approach and explore how young women who suffer from AN perceive treatment technologies in light of the concept of authenticity. Interview data (...) showed that participants in this study did not seem to unconditionally adhere to treatment modalities that only imply laborious self-work, such as therapy. The data also showed that they were willing to accept new treatment possibilities such as pharmacological or brain-directed treatment strategies, which they view as having potential instrumental value in coping with certain symptoms of the illness. However, such modalities can pose threats to patients’ authenticity, especially with regard to self-discovery. I argue that, in a context where there is an increased interest in brain-directed treatment strategies for AN, studies should continue to explore the ethical and psychological impact of such treatment technologies on individuals. (shrink)

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

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

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

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

In May 2012, in A Local Authority v E and Others,' a best interests ruling was made under the Mental Capacity Act 2005 to coercively treat a severely anorexic woman, E, against her will. The best interests decision was purportedly reached through a process of judicialbalancing; however there is something deeply unsatisfactory about this account. This commentary delves beyond the expressed balancing method and applies the tools of philosophical hermeneutics to both understand and challenge the best interests ruling in A (...) Local Authority v E and Others. First, the hermeneutic concept of 'prejudice' makes explicit the implicit judgments determining the best interests decision in this case. Secondly the commentary challenges the best interests decision in two ways: the hermeneutic emphasis on dialogical understanding provides grounds for questioning the judge's failure to integrate the views of E and her wider decision community ; the ruling could be deemed invalid due to the implicit application of a status-based rather than statutory functional test to assess E's current and retrospective capacity. (shrink)