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

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

Most jurisdictions require that a mental capacity assessment be conducted using a functional model whose definition includes several abilities. In England and Wales and in increasing number of countries, the law requires a person be able to understand, to retain, to use or weigh relevant information and to communicate one’s decision. But interpreting and applying broad and vague criteria, such as the ability ‘to use or weigh’ to a diverse range of presentations is challenging. By examining actual court judgements of (...) capacity, we previously developed a descriptive typology of justifications used in the application of the Mental Capacity Act criteria. We here critically optimise this typology by showing how clear definitions—and thus boundaries—between the criteria can be achieved if the ‘understanding’ criterion is used narrowly and the multiple rationales that fall under the ability to ‘use or weigh’ are specifically enumerated in practice. Such a typology-aided practice, in theory, could make functional capacity assessments more transparent, accountable, reliable and valid. It may also help to create targeted supports for decision making by the vulnerable. We also discuss how the typology could evolve legally and scientifically, and how it lays the groundwork for clinical research on the abilities enumerated by the MCA. No data are available. This paper does not report any original data. (shrink)

Psychiatric disorders can pose problems in the assessment of decision-making capacity (DMC). This is so particularly where psychopathology is seen as the extreme end of a dimension that includes normality. Depression is an example of such a psychiatric disorder. Four abilities (understanding, appreciating, reasoning and ability to express a choice) are commonly assessed when determining DMC in psychiatry and uncertainty exists about the extent to which depression impacts capacity to make treatment or research participation decisions.

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)

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)

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

The dominant approach to assessing decision-making capacity in medicine focuses on determining the extent to which individuals possess certain core cognitive abilities. Critics have argued that this model delivers the wrong verdict in certain cases where patient values that are the product of mental disorder or disordered affective states undermine decision-making without undermining cognition. I argue for a re-conceptualization of what it is to possess the capacity to make medical treatment decisions. It is, I argue, the ability to track one’s (...) own personal interests at least as well as most people can. Using this idea, I demonstrate that it is possible to craft a solution for the problem cases—one that neither alters existing criteria in dangerous ways (e.g. does not open the door to various kinds of abuse) nor violates the spirit of widely accepted ethical constraints on decision-making assessment. (shrink)

Unrealistic therapeutic beliefs are very common—the majority of patient-subjects enrol in phase 1 trials seeking and expecting significant medical benefit, even though the likelihood of such benefit has historically proven very low. The high prevalence of therapeutic misestimation and unrealistic optimism in particular has stimulated debate about whether unrealistic therapeutic beliefs in early-phase clinical trials preclude adequate informed consent. We seek here to help resolve this controversy by showing that a crucial determination of when such therapeutic beliefs are ethically problematic (...) turns on whether they are causally linked and instrumental to the motivation to participate in the trial. Thus, in practice, it is ethically incumbent on researchers to determine which understanding and beliefs lead to the participant’s primary motivation for enrolling, not to simply assess understanding, beliefs and motivations independently. We further contend that assessing patient-subjects’ appreciation as a component of informed consent—it is already an established component of decision-making capacity assessments—can help elucidate the link between understanding-beliefs and motivation; appreciation refers to an individual’s understanding of the personal significance of both the medical facts and the experience of trial participation. Therefore, we recommend that: in addition to the usual question, ‘Why do you want to participate in this trial?’, all potential participants should be asked the question: ‘What are you giving up by participating in this trial?’ and researchers should consider the settings in which it may be possible and practical to obtain ‘two-point consent’. (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)

This article develops a model of informed consent for fresh oöcyte donation for stem cell research, during in vitro fertilisation (IVF), by building on the importance of patients’ embodied experience. Informed consent typically focuses on the disclosure of material information. Yet this approach does not incorporate the embodied knowledge that patients acquire through lived experience. Drawing on interview data from 35 patients and health professionals in an IVF clinic in Australia, our study demonstrates the uncertainty of IVF treatment, and the (...) tendency for patients to overestimate their chances of success prior to the experience of treatment. Once in active treatment, however, patients identify their oöcytes as both precious and precarious. We argue that it is necessary to formally include embodied experience as a source of knowledge in informed consent procedures, both for gratuitous donation and for egg-sharing regimes. We recommend that at least one full cycle of IVF be completed before approaching women to divert eggs away from their own fertility treatment. (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)

This dissertation contributes to the philosophy of empathy and biomedical ethics by drawing on phenomenological approaches to empathy, intersubjectivity, and affectivity in order to contest the primacy of the intersubjective aspect of empathy at the cost of its affective aspect. Both aspects need to be explained in order for empathy to be accurately understood in philosophical works, as well as practically useful for patient care in biomedical ethics. In the first chapter, I examine the current state of clinical empathy in (...) medicine including professional opinions about empathy, the dominant definition being employed, and the problems that arise from this definition. By trying to define empathy in a way that is useful to the current presuppositions in medicine, clinical empathy aligns with simulation theory, which has three problems: the discrepancy between the way empathy is defined and the way it is explained, the lack of diversity that this theory of empathy allows in our understanding of others, and the lack of affective understanding and affective engagement involved in the patient-physician interaction. These three problems are used to derive three questions that are important for any theory of empathy: (1) What is the phenomenon being explained? (2) What is the intersubjective context of empathy? (3) What is the affective dimension of empathy? The best theory of clinical empathy can be formulated by answering these three questions as they relate to phenomenological theories, which are more attuned to overcoming presuppositions. Chapters two and three each examine a different phenomenological approach to empathy from opposite extremes in their theories of intersubjectivity. Husserl and Stein begin from an isolated, transcendental subject that needs empathy to bridge the gap between itself and others, while Scheler begins from a primary intersubjectivity in which self and other are undifferentiated, making empathy a largely unnecessary skill. Despite their strongly opposed positions, and the acknowledgement that their theories of intersubjectivity necessitate their theories of empathy, I argue that both fail to understand the affective dimension of empathy. Husserl and Stein leave no room in empathy for it to be an affect, while Scheler prioritizes affects that reunite subjects, but leaves empathy itself as a non-affective skill. Chapter four explains Gallagher’s interaction theory as a more moderate approach to the relation between empathy and intersubjectivity. He draws on the insights of the other two theories, but conceives of empathy as a multi-leveled phenomenon that allows for an understanding of others. While this theory does aid in addressing the intersubjective context of empathy in a way that best solves the first two problems with clinical empathy, interaction theory still fails to fully address the affectivity of empathy, maintaining empathy as a largely cognitive ability. Gallagher does acknowledge the affective core of empathy, but he does not explain the way in which it is affective. In response to this problem, I explain Anya Daly’s application of Merleau-Ponty’s theory of reversibility to affectivity as a possible solution to the problematic gap in Gallagher’s theory. Chapter five focuses on theories of clinical empathy in order to address the neglected affective aspects of empathy, and respond to the problem of detached concern. The problems caused by detached concern are explained, as well as why the theories discussed in the middle chapters are still unable to solve them. This is done in two parts. In the first part, I explain the basis of this issue in the cognitive/feeling divide, as explained in the philosophy of emotion. Then, I give a brief overview of the phenomenology of affectivity to be used as a guide to the affectivity of empathy. In the second part, I examine three theories of clinical empathy that attempt to solve the problem of detached concern, noting their strengths and weaknesses based on their similarities to phenomenological approaches to empathy and affectivity. (shrink)

We argue that charging people to participate in research is likely to undermine the fundamental ethical bases of clinical research, especially the principles of social value, scientific validity, and fair subject selection.