Decision-making Capacity matters to whether a patient’s decision should determine her treatment. But why it matters in this way isn’t clear. The standard story is that dmc matters because autonomy matters. And this is thought to justify dmc as a gatekeeper for autonomy – whereby autonomy concerns arise if but only if a patient has dmc. But appeals to autonomy invoke two distinct concerns: concern for authenticity – concern that a choice is consistent with an individual’s (...) commitments; and concern for sovereignty – concern that an individual exercises control over that which is hers to control. Here, I argue, neither concern can alone explain why dmc matters. Instead, dmc matters because it indicates a harmony between the two concerns – the demands of each concern are more likely to agree if a patient has dmc. This vindicates the standard story, but also makes clear that dmc is an inappropriate gatekeeper for autonomy. (shrink)

Decision-making capacity (DMC) is normally taken to include (1) understanding (and appreciation); (2) the ability to deliberate or weigh up; and (3) the ability to express a choice. In an article published recently in PPP, Jacinta Tan and her colleagues (2006) suggest that DMC requires also (4) the absence of 'pathological values' (i.e., values that arise from mental disorder). In this paper, I argue that although (1)–(3) might be necessary for DMC, (4) is not necessary (barring cases (...) where pathological values interfere with (1)–(3)). My argument will simply be that (4) fails to be supported by the empirical data provided by Tan et al., which I claim supports the view that people with pathological values do often have DMC. I also consider but reject the claim that pathological values entail incapacity because they are not 'authentic' to the person. I conclude that the absence of pathological values does not constitute an additional element of DMC and that we cannot justify compulsory treatment of people who have (1)–(3), but not (4), on the grounds they lack DMC. (shrink)

Decision-making capacity is a vital concept in law, ethics, and clinical practice. Two legal cases where capacity literally had life and death significance are NHS Trust v Ms T [2004] and Kings College Hospital v C [2015]. These cases share another feature: unusual beliefs. This essay will critically assess the concept of capacity, particularly in relation to the unusual beliefs in these cases. Firstly, the interface between capacity and unusual beliefs will be examined. This (...) will show that the “using and weighing of information” is the pivotal element in assessment. Next, this essay will explore the relationship between capacity assessment and a decision’s “rationality.” Then, in light of these findings, the essay will appraise the judgments in NHS v T and Kings v C, and consider these judgments’ implications. More broadly, this essay asks: Does capacity assessment examine only the decision-making process, or is it also influenced by a decision’s rationality? If influenced by rationality, capacity assessment has the potential to become “a search and disable policy aimed at those who are differently orientated in the human life-world”. In contentious cases like these, this potential deserves attention. (shrink)

An ethically sound discharge from the hospital can be impeded by a number of factors, including a lack of payor for a patient’s care, a lack of appropriate discharge options, and a lack of authority to sign a patient into a long-term facility. In some cases, the primary barrier involves the patient’s lack of financial decision-making capacity.When a patient’s income comes primarily from government assistance, financial decision making is connected to both the individual’s well-being and (...) to fair allocation of resources. Taking away another person’s financial independence is a substantial intrusion on autonomy and should not be considered lightly. However, poor management of funds can lead to homelessness, medical noncompliance, vulnerability to financial exploitation, and other threats to human flourishing. As with medical decision-making capacity, poor decisions alone do not invalidate an individual’s right to self-determination. And as with medical decision-making capacity, such determinations should not be made ad hoc or be capricious, but should rely on sound assessment criteria. When there are justified concerns that a patient may be vulnerable due to limited financial decision-making capacity, an evaluation should be completed and a surrogate payee be sought, when appropriate. (shrink)

BackgroundInformed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research.Methods53 subjects with DSM-5 diagnoses of a Substance Use Disorder and 50 non psychiatric comparison subjects participated in the survey from December 2014 to March 2015. This cross-sectional study was (...) carried out at a community-based Outpatient Treatment Center and at an urban-located Health Centre in Spain. A binary judgment of capacity/incapacity was made guided by the MacArthur Competence Assessment Tool for Clinical Research and a clinical interview. Demographics and clinical characteristics were assessed by cases notes and the Mini-Mental State Examination, the Global Assessment Functional Scale and the Clinical Global Impression Scale.ResultsNPCs performed the best on the MacCAT–CR, and patients with SUD had the worst performance, particularly on the Understanding and Appreciation subscales. 32.7 % SUD people lacked research-related decisional capacity. There were no statistically significant differences between the groups in terms of capacity to consent to research.ConclusionsThe findings of our study provide evidence that a large proportion of individuals with SUD had decisional capacity for consent to research. It is therefore inappropriate to draw conclusions about capacity to make research decisions on the basis of a SUD diagnosis. In the absence of advanced cognitive impairment, acute withdrawal or intoxication, we should assume that addicted persons possess decision-making capacity. Thus, the view that people with SUD would ipso facto lose decision-making power for research consent is flawed and stigmatizing. (shrink)

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is (...) to revisit and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

Decision-making capacity (DMC) plays an important role in clinical practice—determining, on the basis of a patient’s decisional abilities, whether they are entitled to make their own medical decisions or whether a surrogate must be secured to participate in decisions on their behalf. As a result, it’s critical that we get things right—that our conceptual framework be well-suited to the task of helping practitioners systematically sort through the relevant ethical considerations in a way that reliably and transparently delivers (...) correct verdicts about who should and should not have the authority to make their own medical decisions. Unfortunately, however, the standard approach to DMC does not get things right. It is of virtually no help in identifying and clarifying the relevant ethical considerations. And, embedded in the prevailing anti-paternalist paradigm, DMC assessments obfuscate and distort the underlying ethical justification for granting or withholding decisional authority. Here, we describe the core commitments of the standard approach to DMC and then highlight three problems with it. We then argue that these problems are significant enough that they call for more than merely tinkering and fine tuning—variations of the standard approach cannot adequately address them. Instead, we should ditch DMC. (shrink)

Principle 2 of the 2005 Mental Capacity Act (MCA) requires that decision-making capacity should be assumed, unless there is conclusive evidence, on a balance of probabilities, to the contrary (Department of Constitutional Affairs 2005). In his article “The Paradox of the Assessment of Capacity Under the Mental Capacity Act 2005,” Ajit Shah (2011) raises the concern that the new Deprivation of Liberty Safeguards (DOLS), introduced through the Mental Health Act (Department of Health 2007), conflict (...) with this principle (henceforth, the principle of presumed capacity) because, in practice, they will encourage the routine assessment of capacity even in the absence of any positive evidence of diminished capacity .. (shrink)

In this article, we discuss the case of Michael Johnson, an African-American man who sought treatment for respiratory distress due to COVID-19, but who was adamant that he did not want to be intubated due to his belief that ventilators directly cause death. This case prompted reflection about the ways in which a false belief can create uncertainty and complexity for clinicians who are responsible for evaluating decision-making capacity (DMC). In our analysis, we consider the extent to (...) which Mr. Johnson demonstrated capacity according to each of Appelbaum’s criteria. Although it was fairly clear that Mr. Johnson lacked DMC on the basis of both understanding and appreciation, we found ourselves reflecting upon the false belief that seemed to motivate his refusal. This led us to further consider the ways in which our current social and political environment can complicate evaluations of patients’ preferences and reasons for declining life-sustaining interventions. In particular, we consider the impact of the role of misinformation and systemic racism in preparing the grounds for false beliefs. (shrink)

The Patient Self Determination Act of 1991 brought much needed attention to the importance of advance care planning and surrogate decision-making. The purpose of this law is to ensure that a patient’s preferences for medical care are recognized and promoted, even if the patient loses decision-making capacity. In general, patients are presumed to have DMC. A patient’s DMC may come under question when distortions in thinking and understanding due to illness, delirium, depression or other psychiatric (...) symptoms are identified or suspected. Physicians and other healthcare professionals working in hospital settings where medical illness is frequently comorbid with depression, adjustment disorders, demoralization and suicidal ideation, can expect to encounter ethical tension when medically sick patients who are also depressed or suicidal request do not resuscitate orders. (shrink)

In their article “Three Kinds of Decision-Making Capacity for Refusing Medical Interventions,” Navin et al. (2022) argue that we should recognize two forms of decision-making capacity (DMC) besides...

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...

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)

BackgroundThe assessment of patients’ decision-making capacity is ubiquitous in contemporary healthcare. This paper examines the ethics of undisclosed probing of capacity by psychiatrists. The discussion will refer to the law in England and Wales, though the highlighted issues are likely to be relevant in similar jurisdictions.Main textDecision-making capacity is a private attribute, and patients may not necessarily be aware that one of their personal abilities is being explored. Routine exploration of capacity has not (...) historically been a part of psychiatric examination, but it is now difficult to avoid during psychiatric interview.Ethical practice and shared decision-making require patients to be aware that their decision-making may be evaluated by the doctor at some point, and the potential implications of an objective professional conclusion of incapacity. Case law directs that patients should be informed about any assessment of their decision-making ability, though the extent to which this has translated into practice is unclear. However, explanation about the assessment may cause a patient to react negatively, which may impede therapeutic engagement and constitute an ethical dilemma. It is argued that in the absence of systemic measures, professionals should retain the discretion to decide whether a particular patient should be informed about the impending probe into their decision-making ability, or not. In the latter instance, concealment of information about the assessment or its purpose should be subject to the caveats and safeguards associated with any recourse to therapeutic exception.ConclusionThe necessity to mandatorily inform patients about assessment of their capacity introduces a novel ethical dilemma for psychiatrists. The negotiation of this dilemma should not be the prerogative of the clinician, and requires systemic initiatives to ensure universal awareness of patients about the possibility of their capacity being assessed during their journeys through healthcare systems. (shrink)

Should the assessment of decision‐making capacity (DMC) be risk sensitive, that is, should the threshold for DMC vary with risk? The debate over this question is now nearly five decades old. To many, the idea that DMC assessments should be risk sensitive is intuitive and commonsense. To others, the idea is paternalistic or incoherent, or both; they argue that the riskiness of a given decision should increase the epistemic scrutiny in the evaluation of DMC, not increase (...) the threshold for DMC. We respond to the critics’ main concerns by providing a comprehensive account of how risk‐sensitive DMC is coherent, avoids paternalism, and best fulfills the epistemic goal of DMC evaluations. (shrink)

We report on an interview-based study of decision-making capacity in two classes of patients suffering from depression. Developing a method of second-person hermeneutic phenomenology, we articulate the distinctive combination of temporal agility and temporal inability characteristic of the experience of severely depressed patients. We argue that a cluster of decision-specific temporal abilities is a critical element of decision-making capacity, and we show that loss of these abilities is a risk factor distinguishing severely depressed (...) patients from mildly/moderately depressed patients. We explore the legal and clinical consequences of this result. (shrink)

Decision making capacity (DMC) is a fundamental concept grounding the principle of respect for autonomy and the practice of obtaining informed consent. DMC must be determined and documented every time a patient undergoes a hospital procedure and for routine care when there is reason to believe decision making ability is compromised. In this paper we explore a path toward ethically informed development and implementation of a hospital policy related to DMC assessment. We begin with a (...) review of the context of DMC assessment before discussing some considerations relevant to policy creation by healthcare ethics committees. The discussion concludes in a presentation of a typology of capacity assessment policies, which draws upon a sampling of currently used hospital policies to illustrate relevant ethical considerations. (shrink)

The assessment of decision-making capacity in patients with brain injuries presents a range of clinical and legal challenges. Existing guidance on the conduct of such assessments is often generic; guidance specific to patients with brain injury is sparse and coarse-grained. We report on an interview-based study of decision-making capacity in patients suffering from acquired brain injury and organic personality disorder. We identify challenges associated with the assessment of DMC in this patient population, review three (...) bodies of relevant research from cognitive neuropsychology and neurophysiology, and draw on phenomenological analysis to identify three distinct abilities that play a role in decision-making, but which can be compromised in patients with organic personality disorder. We address the challenge of translating clinical findings into legally attestable results. (shrink)

Volume 24, Issue 8, August 2024, Page 114-116.

Abstract:The ethical principle of autonomy requires physicians to respect patient autonomy when present, and to protect the patient who lacks autonomy. Fulfilling this ethical obligation when a patient has a communication impairment presents considerable challenges. Standard methods for evaluating decision-making capacity require a semistructured interview. Some patients with communication impairments are unable to engage in a semistructured interview and are at risk of the wrongful loss of autonomy. In this article, we present a general strategy for assessing (...) decision-making capacity in patients with communication impairments. We derive this strategy by reflecting on a particular case. The strategy involves three steps: (1) determining the reliability of communication, (2) widening the bandwidth of communication, and (3) using compensatory measures of decision-making capacity. We argue that this strategy may be useful for assessing decision-making capacity and preserving autonomy in some patients with communication impairments. (shrink)

Decision-making capacity (DMC) is the gatekeeping element for a patient’s right to self-determination with regard to medical decisions. A DMC evaluation is not only conducted on descriptive grounds but is an inherently normative task including ethical reasoning. Therefore, it is dependent to a considerable extent on the values held by the clinicians involved in the DMC evaluation. Dealing with the question of how to reasonably support clinicians in arriving at a DMC judgment, a new tool is presented (...) that fundamentally differs from existing ones: the U-Doc. By putting greater emphasis on the judgmental process rather than on the measurement of mental abilities, the clinician as a decision-maker is brought into focus, rendering the tool more of an evaluation guide than a test instrument. In a qualitative study, the perceived benefits of and difficulties with the tool have been explored. The findings show on the one hand that the evaluation aid provides basic orientation, supports a holistic perspective on the patient, sensitizes for ethical considerations and personal biases, and helps to think through the decision, to argue, and to justify one’s judgment. On the other hand, the room for interpretation due to absent operationalisations, related ambiguities, and the confrontation with one’s own subjectivity may be experienced as unsettling. (shrink)

Law 49/2018, of August 14, created the Portuguese legal regime of the assisted decision-making (capacity), thus eliminating the legal institutes of interdiction and disqualification, provided for in the Civil Code (CC). The aim of this legal regime was to embed a new vision of disability based on a model of rights, that grants people with disabilities an independent and autonomous life and reflects the acceptance of the International Convention on the Rights of Persons with Disabilities (CRPD) guidelines. (...) This paper intends to discuss the ‘new’ Portuguese legal system regarding the legal capacity of persons with disabilities and its role in valuing the expression of the real will of people with disabilities. (shrink)

BackgroundEvaluation of decision-making capacity to consent to medical treatment has proved to be difficult in patients with dementia. Studies showed that physicians are often insufficiently trained in the evaluation of decision-making capacity. In this study, we present findings from a secondary analysis of a qualitative interviews with physicians. These interviews were initially used to assess usability of an instrument for the evaluation of decision-making capacity. By looking at difficult cases of (...) class='Hi'>decision-making capacity evaluation in patients with dementia, we provide recommendations for such evaluations in clinical practice.MethodsWe used thematic coding to analyse physicians’ narratives of problematic decision-making capacity evaluations in patients with dementia to uncover challenging issues of decision-making capacity evaluation.ResultsIn this study, decision-making capacity evaluations in patients with dementia were mainly perceived as challenging when they pertained to treatment refusals and treatment unrelated circumstances, such as psychiatric consultation, advance directives, and new living arrangements. Furthermore, the physicians reported training needs regarding situation-independent challenges with decision-making capacity evaluation.ConclusionsUpon further examining self-reported training needs and challenging cases, we have developed recommendations to improve decision-making capacity evaluations in clinical practice. In these recommendations, we argue that being able to evaluate decision-making capacity is an integral part of the informed consent process. (shrink)

There is wide consensus among bioethicists about the importance of autonomy when determining whether or not a patient has the right to refuse life-saving treatment (LST). In this context, autonomy has typically been understood in terms of the patient’s ability to make an informed decision. According to the traditional view, decision-making capacity (DMC) is seen as both necessary and sufficient for the right to refuse LST. Recently, this view has been challenged by those who think that (...) considerations of authenticity and putative counterexamples should lead us to revise the traditional account. In this paper, we respond to these revisionist arguments, and we defend the traditional view according to which we have autonomy-based reasons to respect a patient’s decision to refuse LST if and only if she has DMC. (shrink)

Because autonomy is regarded as central to modern bioethics; there is a considerable focus on the criteria by which autonomy may be judged. The most significant criterion used in day-to-day practic...

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.

Assessment of decision-making capacity (DMC) can be difficult in acquired brain injury (ABI) particularly with the syndrome of organic personality disorder (OPD) (the “frontal lobe syndrome”). Clinical neuroscience may help but there are challenges translating its constructs to the decision-making abilities considered relevant by law and ethics. An in-depth interview study of DMC in OPD was undertaken. Six patients were purposefully sampled and rich interview data were acquired for scrutiny using interpretative phenomenological analysis. Interview data (...) revealed that awareness of deficit and thinking about psychological states can be present. However, the awareness of deficit may not be “online” and effectively integrated into decision-making. Without this online awareness of deficit the ability to appreciate or use and weigh information in the process of deciding some matters appeared absent. We argue that the decision-making abilities discussed are: (1) necessary for DMC, (2) threatened by ABI, and (3) assessable at interview. Some advice for practically incorporating these abilities within assessments of DMC in patients with OPD is outlined. (shrink)

Following a Canadian Supreme Court ruling invalidating an absolute prohibition on physician assisted dying, two reports and several commentators have recommended that the Canadian criminal law allow medical assistance in dying (MAID) for persons with a diagnosis of mental disorder. A key element in this process is that the person requesting MAID be deemed to have the ‘mental capacity’ or ‘mental competence’ to consent to that option. In this context, mental capacity and mental competence refer to ‘decision- (...) class='Hi'>making capacity’, which is a distinct area of clinical study and research in the theory of informed consent. The purpose of this discussion is to bring several controversial but insufficiently acknowledged problems associated with decision-making capacity to the forefront of the proposed extension of MAID to persons diagnosed with mental disorders. Open-ended access to MAID by persons who suffer from mental health conditions already exists in Belgium and the Netherlands, where the issues raised here are equally relevant. In this paper, we highlight the serious limitations of relying on capacity assessments to allow access to MAID/Euthanasia. (shrink)

A patient’s decision-making capacity or competence is among the prerequisites for valid consent to medical treatment, and is regarded as the gatekeeping element in ensuring respect for patients’ self-determination. The issue is especially relevant in the case of vulnerable persons, such as patients who are cognitively or mentally impaired, and where medical decisions carry far-reaching consequences. As a grounding principle, DMC is a priori assumed, and challenged only when substantial doubts arise owing to observed or assumed deficiencies (...) of the capacities commonly considered relevant for competent decision making ; in this sense, the onus is on... (shrink)

Volume 24, Issue 8, August 2024, Page 90-93.

Marshall and colleagues (2024) contribute to the literature on autonomy and decision-making capacity by focusing on the case of individuals with opioid use disorder who refuse to remain in the hosp...

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)

Examples of patients with anorexia nervosa, depression or borderline personality disorder who have decision-making capacity as currently operationalized, but refuse treatment, are discussed. It appears counterintuitive to respect their treatment refusal because their wish seems to be fuelled by their illness and the consequences of their refusal of treatment are severe. Some proposed solutions have focused on broadening the criteria for decision-making capacity, either in general or for specific patient groups, but these adjustments might (...) discriminate against particular groups of patients and render the process less transparent. Other solutions focus on preferences expressed when patients are not ill, but this information is often not available. The reason for such difficulties with assessing decision-making capacity is that the underlying psychological processes of normal decision-making are not well known and one cannot differentiate between unwise decisions caused by an illness or other factors. The proposed alternative, set out in this paper, is to allow compulsory treatment of patients with decision-making capacity in cases of an emergency, if the refusal is potentially life threatening, but only for a time-limited period. The argument is also made for investigating hindsight agreement, in particular after compulsory measures. -/- . (shrink)

Reports of children participating in hunger strikes while detained in offshore detention centres raise interrelated ethical issues and recognizable challenges for the medical decision-makers at these sites. A composite case study, informed by reports in the public domain, is employed to explore the unique challenges of consent and decision-making in these circumstances and the perennial issues inherent in adolescents’ developing capacity and autonomy. We present an amalgamated case of a fourteen-year-old adolescent who refused to consent to (...) medical reversal of her hunger strike protest. The medical team became the final arbiter when her parents, who were also in detention, could not agree with each other even after mediation. The case explores the complexity of evaluating the adolescent’s capacity to provide informed consent while influenced by the opinions of co-detainees in this extreme setting. We argue that the parents and the child had compromised decisional capacity due to the effects of detention. The challenges to the medical team are recognized and discussed. The team members faced a difficult dilemma and considered the competing values of the multiple cultural and ethical factors. Each team member integrated his or her own roles, duties, and discipline-specific professional guidelines with the primary goal of mitigating potential harms. (shrink)

In the United States, the dominant model of decision‐making capacity (DMC) is the “four abilities model,” which judges DMC according to four criteria: understanding, appreciation, reasoning, and communicating a choice. Some critics argue that this model is “too cognitive” because it ignores the role of emotions and values in decision‐making. But so far there is no consensus about how to incorporate such factors into a model of DMC while still ensuring that patients with unusual or (...) socially disapproved values still have their autonomous decisions respected. In this paper, we aim to give an account of the role of values in decision‐making which can answer some of the lingering questions about capacity. In the current literature, defenders of the inclusion of values in DMC tend to propose solutions which focus on the distorted or incoherent attributes of the values themselves. We argue that shifting the focus onto valuing as an ability is a better solution and that a complete picture of capacity includes understanding, appreciation, reasoning, communicating a choice, and the ability to value. On the basis of a conceptual analysis of the necessary conditions for autonomous decision‐making, we derive a conception of the ability to value. On our account, the ability to value has four components: the possession of values, the ability to access those values, the ability to engage in practical reasoning with one's values, and the ability to act on the result of that reasoning. We describe the positive components of the ability to value, some indicators of impairment, and some implications of our account. (shrink)

This article is about the information relevant to decision-making capacity in refusal of life-prolonging medical treatment cases. We examine the degree to which the phenomenology of the options available to the agent—what the relevant states of affairs will feel like for them—forms part of the capacity-relevant information in the law of England and Wales, and how this informational basis varies across adolescent and adult medical treatment cases. We identify an important doctrinal phenomenon. In the leading authorities, (...) the courts appear to count the first-personal phenomenology of the available options among the information that adolescents seeking to refuse life-prolonging treatment must understand and appreciate in order to possess capacity; adults are not held to this (higher) standard. We evaluate this differential treatment in light of philosophical work on transformative choice—decisions involving options whose sensory character, and effect on our values and preferences, are grasped only through experience itself. (shrink)

The phenomenon whereby severely disabled persons self-report a higher than expected level of subjective well-being is called the “disability paradox.” One explanation for the paradox among brain injury survivors is “response shift,” an adjustment of one’s values, expectations, and perspective in the aftermath of a life-altering, disabling injury. The high level of subjective well-being appears paradoxical when viewed from the perspective of the non-disabled, who presume that those with severe disabilities experience a quality of life so poor that it might (...) make their lives not worth living. This presumption has profound consequences, for it may inform end-of-life choices made in advance directives, or influence decisions made by surrogates on behalf of persons who are unable to direct their own medical treatment. -/- Peterson et al propose a cautious, well-considered plan to use fMRI-based brain-computer interfaces to assess the decision making capacity of covertly aware, behaviorally non-responsive individuals who retain high levels of preserved cognition. Their plan, if it succeeds, could eventually restore autonomy and empower some severely disabled persons, allowing them to participate in clinical decision making. Peterson et al discuss possible in-principle objections to their proposal, among them the “argument from psychological health,” and the “changing sets of values” objection. These objections both presume that deviations from a pre-injury norm could indicate diminished decision making capacity. This presumption threatens the autonomy of the patient who is capable of making decisions, but whose post-injury decisions appear to diverge from pre-injury preferences or values. In light of the potential for response shift, and the disability paradox, it should not be inferred that changes in values or preferences are unreflective of the true current preferences of a brain-injured person, nor are they conclusive evidence of diminished capacity. Presuming diminished capacity on the basis of unexpected or unconventional preferences has, in the past, been used to disempower patients whose autonomy and capacity would not have been doubted had they made choices that accorded with the expectations or values of others. We must be cautious, and vigilant, to prevent similarly diminishing the autonomy of covertly aware, behaviorally non-responsive individuals on the basis of empirically and ethically questionable inferences about their decision making capacity. (shrink)

Decision-making capacity is a key concept in contemporary healthcare ethics. Previous research has mainly focused on philosophical, conceptual issues or on evaluation of different tools for assessing patients’ capacity. The aim of the present study is to investigate how the concept and its normative role are understood in Swedish psychiatric care. Of special interest for present purposes are the relationships between decisional capacity and psychiatric disorders and between health law and practical ethics.

Thanks to Barton Palmer and John McMillan for these thoughtful commentaries. We found much to agree with and it is striking how so many of the issues relating to decision-making capacity assessment find resonances outside of an English jurisdiction. California and New Zealand are clearly grappling with a very similar set of issues and the commentaries speak to the international nature of these discussions.We will pick up on some main points the commentaries raise.As Palmer notes, DMC law (...) is vulnerable to the criticism that it does not attend to the authenticity of a decision. In ordinary language, this is the idea that someone is deciding while “not their self” or that it is the “illness speaking.” There is a... (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)

An accurate determination of an individual’s decisionmaking capacity is fundamental to obtaining informed consent for medical treatment, as it allows clinicians to balance respect for patients’ autonomy with the best interests of patients. Despite the increasing demand for assessments of patients’ capacity, healthcare professionals find this task complex and challenging. Currently, assessments are largely based on patients’ cognitive ability and do not sufficiently take into account other factors that influence patients’ judgment. Furthermore, it is important to assess for (...) and treat modifiable factors that impair decision-making capabilities, and to have guidance on when it is appropriate to delay treatment-related decisions. This article will review current methods for assessing capacity, highlight other factors to consider in the decision-making process, and propose an enhanced framework to guide clinicians in making timely and prudent treatment-related decisions for patients with impaired capacity. (shrink)

Informed consent for anesthesia is an ethical and legal requirement. A patient must have adequate decision-making capacity (DMC) as a prerequisite to informed consent. In determining whether a patient has sufficient DMC, anesthesiologists must draw on their knowledge of DMC. Knowledge gaps regarding DMC may result in incorrect assessments of patients’ capacity. This could translate to an informed consent process that is ethically and legally unsound. This study examined the DMC-related knowledge of anesthesiologists in a group (...) of four university-affiliated hospitals. The findings suggest that anesthesiologists have several areas of knowledge deficiency regarding DMC and DMC assessment. These findings could inform the development of undergraduate and postgraduate curricula. (shrink)