Personal autonomy is often lauded as a key value in contemporary Western bioethics. Though the claim that there is an important relationship between autonomy and rationality is often treated as uncontroversial in this sphere, there is also considerable disagreement about how we should cash out the relationship. In particular, it is unclear whether a rationalist view of autonomy can be compatible with legal judgments that enshrine a patient's right to refuse medical treatment, regardless of whether the reasons underpinning the choice (...) are known and rational, or indeed whether they even exist. Jonathan Pugh brings recent philosophical work on the nature of rationality to bear on the question of how we should understand personal autonomy in contemporary bioethics. In doing so, he develops a new framework for thinking about the concept of autonomy, one that is grounded in an understanding of the different roles that rational beliefs and rational desires have to play in it. Pugh's account allows for a deeper understanding of d the relationship between our freedom to act and our capacity to decide autonomously. His rationalist perspective is contrasted with other prominent accounts of autonomy in bioethics, and the revisionary implications it has for practical questions in biomedicine are also outlined. (shrink)

In this article some of the presuppositions that underly the current ideas about decision making capacity, autonomy and independence are critically examined. The focus is on chronic disorders, especially on chronic physical disorders. First, it is argued that the concepts of decision making competence and autonomy, as they are usually applied to the problem of legal (in)competence in the mentally ill, need to be modified and adapted to the situation of the chronically (physically) ill. Second, it is argued that autonomy (...) and dependence must not be considered as two mutually exclusive categories. It is suggested that decision making may take on the form of a more or less conscious decision not to be involved in making all kinds of explicit and deliberate decisions. Elaborating on Agich's distinction between ideal and actual autonomy, the concept of Socratic autonomy is introduced. (shrink)

The notion of respect for autonomy dominates bioethical discussion, though what qualifies precisely as autonomous action is notoriously elusive. In recent decades, the notion of autonomy in medical contexts has often been defined in opposition to the notion of autonomy favoured by theoretical philosophers. Where many contemporary theoretical accounts of autonomy place emphasis on a condition of “authenticity”, the special relation a desire must have to the self, bioethicists often regard such a focus as irrelevant to the concerns of medical (...) ethics, and too stringent for use in practical contexts. I argue, however, that the very condition of authenticity that forms a focus in theoretical philosophy is also essential to autonomy and competence in medical ethics. After tracing the contours of contemporary authenticity-based theories of autonomy, I consider and respond to objections against the incorporation of a notion of authenticity into accounts of autonomy designed for use in medical contexts. By looking at the typical problems that arise when making judgments concerning autonomy or competence in a medical setting, I reveal the need for a condition of authenticity—as a means of protecting choices, particularly high-stakes choices, from being restricted or overridden on the basis of intersubjective disagreement. I then turn to the treatment of false and contestable beliefs, arguing that it is only through reference to authenticity that we can make important distinctions in this domain. Finally, I consider a potential problem with my proposed approach; its ability to deal with anorexic and depressive desires. (shrink)

Gerben Meynen (2019) invites us to consider the potential ethical implications of what he refers to as “thought apprehension” technology for psychiatric practice, that is, technologies that involve recording brain activity, and using this to infer what people are thinking (or intending, desiring, feeling, etc.). His article is wide-ranging, covering several different ethical principles, various situations psychiatrists might encounter in therapeutic, legal and correctional contexts, and a range of potential incarnations of this technology, some more speculative than others. Although Meynen’s (...) article raises some highly relevant potential implications of some “thought apprehension”-based neurotechnologies, which are certainly worthy of further exploration, I suggest that Meynen’s analysis is beset by two problems. First, some of the technologies that form the focus of his discussion are too speculative, and second, due to the many issues under consideration, some problems are not adequately characterized, relevant ethical principles are misidentified, and valuable literature is not sufficiently engaged with. Consideration of these weaknesses might allow us to better see how to conduct a fruitful analysis of speculative neurotechnologies. (shrink)

A competent patient has the right to refuse treatment necessary to sustain life. However, for many end-of-life decisions, we lack direct access to the wishes of a competent patient. Some treatment decisions near the end of life involve patients with severely diminished mental capacity, some involve patients who are unable to communicate, and some involve patients who are simply unable or unwilling to participate in decisionmaking due to the nature or severity of their illness.

This paper presents four arguments in favour of respecting Ulysses Contracts in the case of individuals who suffer with severe chronic episodic mental illnesses, and who have experienced spiralling and relapse before. First, competence comes in degrees. As such, even if a person meets the usual standard for competence at the point when they wish to refuse treatment, they may still be less competent than they were when they signed the Ulysses Contract. As such, even if competent at time 1 (...) and time 2, there can still be a disparity between the levels of competence at each time. Second, Ulysses Contracts are important to protect people’s most meaningful concerns. Third, on the approach defended, the restrictions to people’s liberty would be temporary, and would be consistent with soft paternalism, rather than hard paternalism: the contracts would be designed in such a way that individuals would be free to change their minds, and to change or cancel their Ulysses Contracts later. Finally, even if one rejects the equivalence thesis, this is still consistent with the claim that, in particular cases, it can be as wrong to allow a harm as to do a harm. Nevertheless, controversies remain. This paper also highlights several safeguards to minimise risks. Ultimately, we argue that people who are vulnerable to spiralling deserve a way to protect their autonomy as far as possible, using Ulysses Contracts when necessary. (shrink)

An assessment of decision-making capacity is the accepted procedure for determining when a person is not competent. An inferential gap exists between the criteria for capacity specific abilities and the legal requirements to understand relevant information and appreciate the consequences of a decision. This gap extends to causal influences on a person'scapacity to decide. Using a published case of depression, we illustrate that assessors' uses of diagnostic information is frequently not up to the task of bridging this inferential gap in (...) a justifiable way. We then describe cases of faulty judgement which challenge the understanding of diagnostic causal influences. These cases help to clarify the nature of the expertise required for capacity assessments. In practice, the requirements of decision-making capacity are often abandoned to other considerations due to a lack of requisite expertise. The legal policy supporting decision-making capacity as a means to protective intervention is justified only if the requisite expertise is developed. We propose the requisite expertise to be developed in the long term as a distinct multidisciplinary endeavour. (shrink)

According to what we propose to call “the competence model,” competence is a necessary condition for valid informed consent. If a person is not competent to make a treatment decision, the decision must be made by a substitute decision-maker on her behalf. Recent reports of various United Nations human rights bodies claim that article 12 of the Convention on the Rights of Persons with Disabilities involves a wholesale rejection of this model, regardless of whether the model is based on a (...) status, outcome, or functional approach to competence. The alleged rationale of this rejection is that denying persons the right to make their own treatment decisions based on an assessment of competence necessarily discriminates against persons with mental disorders. Based on a philosophical account of the nature of discrimination, we argue that a version of the competence model that combines supported decision-making with a functional approach to competence does not discriminate against persons with mental disorders. Furthermore, we argue that status- and outcome-based versions of the competence model are discriminatory. (shrink)

The principle of autonomy presupposes Patient Decision Making Competence (PDMC). For a few decades a considerable amount of empirical research has been done into PDMC. In this contribution that research is explored. After a short exposition on four qualities involved in PDMC, different approaches to assess PDMC are distinguished, namely a negative and a positive one. In the negative approach the focus is on identifying psychopathologic conditions that impair sound decision making; the positive one attempts to assess whether a patient (...) actually has the required abilities and qualities. Characteristic of the latter approach is the use of (or development of) test-like instruments for PDMC assessment. Some of these tests are discussed and commented on. Although they may be useful in investigating aspects of PDMC, none of the described approaches and tests offers a reliable and valid method for PDMC assessment. In response to a potential misuse of tests, the concept of a supportive situation is briefly introduced in order to draw attention to the risk of prematurely deeming patients incompetent on the basis of low test scores, whereas their insufficient performance may be (partly) attributable to alack of situational support. Also, the need for and possibility of an emotionalist concept of PDMC are suggested, as an alternative to the more common rationalist one. In this regard,the legitimacy of competence being conceived as a presumption or fiction of law, deserves further investigation. (shrink)

In _Pharmaceutical Freedom_ Professor Flanigan argues we ought to grant people self-medication rights for the same reasons we respect people’s right to give (or refuse to give) informed consent to treatment. Despite being the most comprehensive argument in favour of self-medication written to date, Flanigan’s _Pharmaceutical Freedom_ leaves a number of questions unanswered, making it unclear how the safe-guards Flanigan incorporates to protect people from harming themselves would work in practice. In this paper, I extend Professor Flanigan’s account by discussing (...) a hypothetical case to illustrate how these safe-guards could work together to protect people from harms caused by their own ignorance or incompetence. (shrink)

The mental health recovery movement promotes patient self-determination and opposes coercive psychiatric treatment. While it has made great strides towards these ends, its rhetoric impairs its political efficacy. We illustrate how psychiatry can share recovery values and yet appear to violate them. In certain criminal proceedings, for example, forensic psychiatrists routinely argue that persons with mental illness who have committed crimes are not full moral agents. Such arguments align with the recovery movement’s aim of providing appropriate treatment and services for (...) people with severe mental illness, but contradict its fundamental principle of self-determination. We suggest that this contradiction should be addressed with some urgency, and we recommend a multidisciplinary collaborative effort involving ethics, law, psychiatry, and social policy to address this and other ethical questions that arise as the United States strives to implement recovery-oriented programs. (shrink)

Depression is often diagnosed in patients nearing the end of their lives and medication or psychotherapy is prescribed. In many cases this is appropriate. However, it is widely agreed that a health care professional should treat sick persons so as to improve their condition as they define improvement. This raises questions about the contexts in which treatment of depression in late life is appropriate. This article reviews a problematic case concerning the appropriateness of treatment in light of the literature in (...) bioethics. Specific attention is paid to the concept of authenticity and the role of suffering. Suffering is often the result of a situation in which one's self is damaged. In some circumstances, this suffering should not be seen as a symptom of illness but as a reflection, in a difficult life context, of the individual's authentic nature. Assessment of depression in the elderly must go beyond a symptom list and must consider both the context of the individual's situation and his or her authentic self. When the symptoms reflect the individual's assessment of the situation in the context of the authentic self, they may be "appropriate." However, even when the symptoms are appropriate, if they interfere with life assessment and adjustment, treatment should be considered. (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...

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

When it becomes available, neuroscience-based apprehension of subjective thoughts is bound to have a profound impact on several areas of society. One of these areas is medicine. In principle, medical specialties that are primarily concerned with mind and brain are most likely to apply neurotechnological thought apprehension (NTA) techniques. Psychiatry is such a specialty, and the relevance of NTA developments for psychiatry has been recognized. In this article, I discuss ethical issues regarding the use of NTA techniques in psychiatric contexts. (...) First, I consider the notion of neurotechnological “thought apprehension,” as well as some limitations of present-day NTA applications. Next, I identify ethical priorities for its possible future use in psychiatry. The topics I explore concern key (bio)ethical issues: confidentiality, trust and distrust, consent and coercion, and, finally, responsibility. I conclude that mental health-related use of NTA entails some specific ethical concerns that deserve careful attention before introducing these technologies in psychiatric practice. (shrink)

The case of May Redwing, an American Indian woman assessed for competence is examined in detail. The case highlights the interconnections between the cultures of medicine and law and notes the importance of criteria of competence assessment, but also underscores the necessity of attention to the patient'scultural background in a multi-disciplinary competence assessment team process. Three interrelated areas of inquiry are explored: (1) Can we expect a morally and politically justifiable assessment of competence from a multi-disciplinary approach? (2) What pitfalls (...) threaten a multi-disciplinary approach? and (3) How are the patient'scultural background and values relevant to a proper assessment of competence? These questions are investigated in the context of analyzing and evaluating a particularly difficult case. Although focused on a specific case, the study is instructive and cautionary for any group undertaking the challenges of multi-disciplinary competence assessment. (shrink)

The voluntary and informed consent of subjects has been the central focus of concern in research reviews, overshadowing the importance of all other considerations. The Nuremberg Code, with its rights-based protection of the subject's autonomy above all else, made it difficult to justify research with no intended benefit when subjects are incompetent to make a valid informed choice to participate. Subsequent codes providing for research with incompetent subjects followed the lead of Nuremberg, substituting the informed authorization of a proxy for (...) the informed consent of the subject. (shrink)

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

Physician-assisted death (PAD) of patients whose suffering does not stem from terminal conditions has become more prevalent during the last few decades. This paper is focused on decision-making competence for PAD, specifically in situations in which PAD is related solely to psychiatric illness. First, a theoretical analysis presents the premises for the argument that competence for physician-assisted death for psychiatric patients (PADPP) should be determined based on a higher threshold in comparison to the required competence for conventional medical interventions. Second, (...) the higher threshold for decision-making competence for PADPP is illustrated. Third, several real PADPP cases are critically discussed, as an illustration to decision-making competence evaluations that would not have met the higher standard. Finally, a short summary of practical suggestions regarding the assessment of decision-making competence for PADPP is presented. Psychiatrists are called to address the ethical, legal, societal and clinical challenges related to PADPP and should be prepared for its probable expansion. (shrink)

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

Rapid advances in neuroscience may enable us to identify the neural correlates of ordinary decision making. Such knowledge opens up the possibility of acquiring highly accurate information about people’s competence to consent to medical procedures and to participate in medical research. Currently we are unable to determine competence to consent with accuracy and we make a number of unrealistic practical assumptions to deal with our ignorance. Here I argue that if we are able to detect competence to consent and if (...) we are able to develop a reliable neural test of competence to consent, then these assumptions will have to be rejected. I also consider and reject three lines of argument that might be developed by a defender of the status quo in order to protect our current practices regarding judgments of competence in the face of the availability of information about the neural correlates of ordinary human decision making. (shrink)

While ethical and empirical interest in so-called secondary variants and incidental findings in clinical genetics contexts is growing, critical reflection on the ethical foundations of the various recommendations proposed is thus far largely lacking. We examine and critique the ethical justifications of the three most prominent disclosure positions: briefly, the clinical geneticist decides, a joint decision, and the patient decides. Subsequently, instead of immediately developing a new disclosure option, we explore relevant foundational ethical values and norms, drawing on the normative (...) and empirical ethical literature. Four ethical signposts are thereby developed to help guide disclosure discussions. These are: respectful sharing of the clinician’s expertise; transparent communication; epistemic modesty; and respect for the embedded nature of the patient. We conclude by considering the most common current disclosure positions in the light of the four ethical signposts. (shrink)

Most regulations and guidelines require that potential research participants be told a great deal of information during the consent process. Many of these documents, and most of the scholars who consider the consent process, assume that all this information must be disclosed because it must all be understood. However, a wide range of studies surveying apparently competent participants in clinical trials around the world show that many do not understand key aspects of what they have been told. The standard view (...) of the conditions for valid consent therefore implies that these people have failed to give valid consent to research participation. In this paper we argue that the standard view is false. The primary function of the requirement that researchers disclose information about a study is the avoidance of illegitimate control over someone’s consent decision, which is a form of fraud.We derive the content and manner of appropriate disclosure by analysing the ways in which the manipulation of information can invalidate consent. Our analysis shows that the informational requirements for valid consent are conceptually distinct and thus unlikely to have identical contents. This implies that consent can be valid when not everything that ought to be disclosed by the person asking for consent is understood by the person who proffers it. (shrink)

Most regulations and guidelines require that potential research participants be told a great deal of information during the consent process. Many of these documents, and most of the scholars who consider the consent process, assume that all this information must be disclosed because it must all be understood. However, a wide range of studies surveying apparently competent participants in clinical trials around the world show that many do not understand key aspects of what they have been told. The standard view (...) of the conditions for valid consent therefore implies that these people have failed to give valid consent to research participation. In this paper we argue that the standard view is false. The primary function of the requirement that researchers disclose information about a study is the avoidance of illegitimate control over someone’s consent decision, which is a form of fraud.We derive the content and manner of appropriate disclosure by analysing the ways in which the manipulation of information can invalidate consent. Our analysis shows that the informational requirements for valid consent are conceptually distinct and thus unlikely to have identical contents. This implies that consent can be valid when not everything that ought to be disclosed by the person asking for consent is understood by the person who proffers it. (shrink)

This article gives a brief introduction to the MacArthur Competence Assessment Tool-Treatment (MacCAT-T) and critically examines its theoretical presuppositions. On the basis of empirical, methodological and ethical critique it is emphasised that the cognitive bias that underlies the MacCAT-T assessment needs to be modified. On the one hand it has to be admitted that the operationalisation of competence in terms of value-free categories, e.g. rational decision abilities, guarantees objectivity to a great extent; but on the other hand it bears severe (...) problems. Firstly, the cognitive focus is in itself a normative convention in the process of anthropological value-attribution. Secondly, it misses the complexity of the decision process in real life. It is therefore suggested that values, emotions and other biographic and context specific aspects should be considered when interpreting the cognitive standards according to the MacArthur model. To fill the gap between cognitive and non-cognitive approaches the phenomenological theory of personal constructs is briefly introduced. In conclusion some main demands for further research to develop a multi-step model of competence assessment are outlined. (shrink)

Ethical and legal discourse pertaining to the ability to consent to treatment and research in England operates within a dualist framework of “competence” and “capacity”. This is confusing, as while there exists in England two possible senses of legal capacity – “first person” legal capacity and “delegable” legal capacity, currently neither is formulated to bear a necessary relationship with decision-making competence. Notwithstanding this, judges and academic commentators frequently invoke competence to consent in discussions involving the validity of offering or withholding (...) consent as a synonym for legal capacity to consent. I argue that this gives rise to a conflation, jeopardising clarity and consistency in law. This is somewhat less problematic in instances of “first-person” legal capacity that are heavily informed by criteria for decision-making competence than in the second sense of legal capacity, which is qualitatively different from decision-making competence, or with first-person legal capacity when defined in different terms from competence. The paper concludes by proposing that the soundest resolution to this problem is by making decision-making competence a necessary and sufficient condition of first-person legal capacity, affording a more scrupulous distinction between the two different forms of legal capacity that exist. (shrink)

Clinicians are often called upon to assess the capacity of a patient to appoint a healthcare agent. Although a consensus has emerged that the standard for such assessment should differ from that for capacity to render specific healthcare decisions, exactly what standard should be employed remains unsettled and differs by jurisdiction. The current models in use draw heavily upon analogous methods used in clinical assessment, such as the “four skills” approach. This essay proposes an alternative model that relies upon categorization (...) and sliding scale risk assessment that can be used to determine to how much scrutiny the proxy appointment should be subjected and how much certainty of accuracy should be required in order to maximize the patient’s autonomy and ensure that her underlying wishes are met. (shrink)

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

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)

The notion that patients’ medical decision-making capacity depends on risk considerations has some acceptance in the bioethical literature. However, it arouses some criticism since it seems to give rise to paternalistic attitudes. In addition, the idea of capacity assessment as a collaborative space in which aid is given to the patient is emphasized so that they can decide about their life. It does not seem ethically acceptable to pose the evaluation as a simple observer report. Capacity assessment can sometimes be (...) impossible or inconsequential. In short, capacity assessment is a procedure that, used wisely, can allow the patient to take charge of their life. Misused, it can be the gateway to unjustified paternalistic actions. (shrink)

According to the doctrine of informed consent medical procedures are morally permissible when a patient has consented to the treatment. Problematically it is possible for a patient to consent to or refuse treatment which consequently leads to a decline in her best interests. Standardly, such conflicts are resolved by prioritising the doctrine of informed consent above the requirement that the medical practitioner acts in accordance with the duty of care. This means that patient free choice is respected regardless as to (...) whether her choice leads to a decline in her best interests, since to disrespect patient choice would be an instance of ‘unwarranted’ paternalism. This thesis defends the claim that in cases where patient consent comes into conflict with her best interests, paternalistic interference is in fact justified. The ambition of the thesis is thus twofold: in the first place I argue that the doctrine of informed consent cannot be used as an ethical guarantor for medical decision making. Secondly I will conclude that hard paternalism is justified in medical practice, thereby calling for a reversal of the prioritisation of informed consent procedures over the medical practitioner’s duty of care. (shrink)

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