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)

I introduce a new distinction between two types of paternalism, which I call ‘internal’ and ‘external’ paternalism. The distinction pertains to the question of whether the paternalized subject’s current evaluative judgments are mistaken relative to a standard of correctness that is internal to her evaluative point of view—which includes her ‘true’ or ‘ideal’ self—as opposed to one that is wholly external. I argue that this distinction has important implications for (a) the distinction between weak and strong paternalism; (b) the distinction (...) between soft and hard paternalism; and (c) medical practice, where internal paternalism can, and probably often does, occur. (shrink)

Disclosure in clinical practice is aimed at promoting patient autonomy, usually culminating in patient choice (e.g., to consent to an operation or not, or between different medications). In medical ethics, there is an implicit background assumption that knowing more about (X) automatically translates to greater, or more genuine, autonomy with respect to one's choices involving (X). I challenge this assumption by arguing that in rare cases, withholding information can promote a patient's autonomy (understood as the capacity for rational choice in (...) alignment with one's values and goals). (shrink)

People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes ‘good’ proxy decision-making for research has remained unexplored. Interventions are needed to (...) improve and support proxy decision-making for research but are hampered by a lack of understanding about what constitutes decision quality in this context. A global increase in conditions associated with cognitive impairment such as dementia has led to an urgent need for more research into these conditions. The COVID-19 pandemic and subsequent necessity to conduct research with large numbers of critically ill patients has made this need even more pressing. Much of the empirical research centres on the desire to improve decision accuracy, despite growing evidence that authenticity is more reflective of the aim of proxy decisions and concerns about the methodological flaws in authenticity-focused studies. Such studies also fail to take account of the impact of decision-making on proxies, or the considerable body of research on improving the quality of healthcare decisions. This paper reports a concept synthesis of the literature that was conducted to develop the first conceptualisation of ‘good’ proxy decisions about research participation. Elements of decision quality were identified across three stages of decision-making: proxy preparedness for decision-making which includes knowledge and understanding, and values clarification and preference elicitation; the role of uncertainty, decisional conflict, satisfaction and regret in the decision-making process; and preference linked outcomes and their effect. This conceptualisation provides an essential first step towards the future development of interventions to enhance the quality of proxy decision-making and ensure proxy decisions represent patients’ values and preferences. (shrink)

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)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

In clinical research, decision-making capacity is often equated with unspecified conceptions of autonomy, and autonomy is often equated with personhood. On this view, the loss of decision-making capacity is seen as a loss of autonomy, and the loss of autonomy subsumes a loss of personhood. An ethical concern arises at the intersection of those philosophical considerations with the legal considerations in informed consent. Because persons with inadequate decision-making capacity cannot provide legally effective consent, enrollment in research can occur only if (...) a surrogate gives permission on the person’s behalf. Federal regulations and resulting institutional policies allow permission from surrogates empowered under state law to consent to medical treatment procedures, typically in a hierarchy of legislatively prioritized relationships lacking regard for what the surrogate actually knows about the current research-related values and preferences of the potential subject. As a result, the research enterprise often countenances reliance on surrogates who have no relational or informational basis for an enrollment decision that aligns with the values and preferences of the subject. Arguing from the perspective that losing decision-making capacity does not alter the moral status of persons, and that respect for persons rather than respect for autonomy is the central ethical obligation, I assess the ethical implications of allowing persons with no knowledge of the values and preferences of the potential subject to make enrollment decisions, concluding that reliance on uninformed surrogates is not an ethically defensible approach to enrolling subjects in clinical research. (shrink)

Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by (...) using a patient’s past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with “covert awareness” may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values. (shrink)

Research involving adults who lack capacity to consent relies on proxy (or surrogate) decision making. Proxy decisions about participation are ethically complex, with a disparity between normative accounts and empirical evidence. Concerns about the accuracy of proxies’ decisions arise, in part, from the lack of an ethical framework which takes account of the complex and morally pluralistic world in which proxy decisions are situated. This qualitative study explored the experiences of family members who have acted as a research proxy in (...) order to develop an understanding of the ethical concepts involved, and the interactions between those concepts. Proxies described a complex process of respecting the wishes and preferences of the person they represented, whist integrating preferences with what they viewed as being in the interests of the person. They aimed to make a decision that was ‘best’ for the person and protected them from harm; they also aimed to make the ‘right’ decision, viewed as being authentic to the person’s values and life. Decisions were underpinned by the relationship between the person and their proxy, in which both trust and trustworthiness were key. Proxies’ decisions, based both on respect for the person and the need to protect their interests, arose out of their dual role as both proxy and carer. The findings raise questions about accounts which rely on existing normative assumptions with a focus on accuracy and discrepancy, and which fail to take account of the requirement for proxies to make authentic decisions that arise out of their caring obligations. (shrink)

Marshall et al. (2024) persuasively argue that some patients with opiate use disorder (OUD), who refuse observation after naloxone resuscitation in the emergency department (ED), “may be making non...

In a Ulysses contract, A gets B, at t1, to agree (i) to act at t2 in such a way that A is made to abide by her own earlier intentions and (ii) to ignore A’s later attempt to rescind the authorization. But why does A’s will at t2 lack the authority it had at t1? This article makes the case that a person has authority to enter a Ulysses contract only insofar as her expressed will at t1 is a (...) better expression of the values that remain attributable to her at t2 than is her expressed will at t2. (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)

Medical clinicians – doctors, nurses, nurse practitioners etc. – are charged to act for the good of their patients. But not all ways of acting for a patient's good are on par: some are paternalistic; others are not. What does it mean to act paternalistically, both in general and specifically in a medical context? And when, if ever, is it permissible for a clinician to act paternalistically? -/- This paper deals with the first question, with a special focus on paternalism (...) in medicine. While it is easy to give a rough characterization of paternalism (i.e. acting for another's good against that person's will), it is surprisingly difficult to provide a unified account of the myriad of actions that seem to count as paternalistic. After surveying four accounts of paternalism, I argue that two – what I call the authority and beneficence accounts – are the strongest on offer. According to the authority account, a clinician acts paternalistically when, for her patient's good, she usurps his decision-making authority. According to the beneficence account, a clinician acts paternalistically when, for her patient's good, she acts only or overrindingly out of concern for his good. I show how the difference between these accounts matters (in part) for how we should think about the nature of surrogate decision making in medicine. I argue that there are reasons – albeit hardly decisive – to prefer the beneficence account to the authority account. I conclude by considering whether attempts by clinicians to rationally persuade their patients to pursue a particular course of action should be thought of as paternalistic. (shrink)

Medical clinicians – doctors, nurses, nurse practitioners etc. – are charged to act for the good of their patients. But not all ways of acting for a patient's good are on par: some are paternalistic; others are not. What does it mean to act paternalistically, both in general and specifically in a medical context? And when, if ever, is it permissible for a clinician to act paternalistically? In Medical Paternalism Part 1, I answered the first question. This paper answers the (...) second. The place of paternalism in clinical medicine is best understood, I argue, in terms of the potential for conflict between the autonomy principle and the beneficence principle. The first enjoins clinicians to respect the decisions of patients with respect to their (the patients') own care. The second enjoins clinicians to act for the good of their patients. Clinicians act paternalistically, I argue, when they act on the beneficence principle to the exclusion of the autonomy principle. Understanding just what these principles amount to (particularly the autonomy principle) reveals that the autonomy principle defeasibly trumps the beneficence principle and that, as a result, acting paternalistically (at least when it comes to competent patients) is presumptively impermissible. (shrink)

Navin, Brummett, and Wasserman (2022) argue—successfully, we think—that the standard “comparative” account of decision-making capacity (DMC) fails to capture an important range of cases in which a...

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

The question of how to treat an incapacitated patient is vexed, both normatively and practically—normatively, because it is not obvious what the relevant objectives are; practically, because even once the relevant objectives are set, it is often difficult to determine which treatment option is best given those objectives. But despite these complications, here is one consideration that is clearly relevant: what a patient prefers. And so any device that could reliably identify a patient’s preferences would be a promising tool for (...) guiding the treatment of incapacitated patients. The patient preference predictor is just such a tool—an algorithm that takes as inputs a patient’s sociodemographic characteristics, and outputs a reliable prediction about that patient’s treatment preferences.1 But some have worried that the use of such a tool would violate or fail to appropriately respect patients’ autonomy. There are, I think, two ways to understand this kind of criticism. First, globally—as a worry that any systematic implementation of the PPP would be problematic on the grounds that it would result in significant or pervasive autonomy violations. Second, locally—as a worry that in some important range of cases, certain uses of the PPP would be problematic on autonomy grounds. Jardas et al, as I read them, address global autonomy-based criticisms, arguing—convincingly, in my view—that there’s no reason to suspect the autonomy concerns raised by the PPP would be so significant and pervasive as to render any implementation of it generally problematic.1 But even with the global criticisms rebuffed, there remains work to be done. Any ethically acceptable implementation of the PPP must be sensitive to the more local autonomy-based criticisms, with restrictions and safeguards in place to ensure respect for autonomy in the kinds of cases in which the use of the PPP might otherwise threaten …. (shrink)

Jack, who is seventy‐five years old, is in the hospital with a terminal condition that has undermined his cognitive faculties. He has left no advance directive and has never had a conversation in which he made his treatment wishes remotely clear. Yet now, a treatment decision must be made, and in modern American medicine, the treatment decision for Jack is supposed to be made by a surrogate decision‐maker, who is supposed to use a decision‐making standard known as “substituted judgment.” According (...) to the substituted judgment standard, Jack’s surrogate decision‐maker, his wife, is supposed to decide on his treatment by determining what Jack would do if he did have decisional capacity. That is, she is supposed to answer the question, what would the patient choose? I will argue that this is the wrong question to ask because when the question has a determinate answer, that answer is sometimes not sufficiently connected to the value that is supposed to make the question morally salient, and because sometimes, perhaps often, there is no determinate answer to the question of what the patient would choose. Jointly, these two problems suggest the need for a different question. (shrink)

My topic is a problem with our practice of surrogate decision-making in health care, namely, the problem of the surrogate who is not doing her job—the surrogate who cannot be reached or the surrogate who seems to refuse to understand or to be unable to understand the clinical situation. The analysis raises a question about the surrogate who simply disagrees with the medical team. One might think that such a surrogate is doing her job—the team just doesn't like how she (...) is doing it. My analysis raises the question of whether she should be overridden. In approaching this problem, I focus not on the range of difficulties in practice but on the underlying moral conceptual issue. My concern will be to show that the moral values that underpin patient decision-making are fundamentally different from those that underpin surrogate decision-making. Identifying the distinctions will set parameters for any successful solution to the “Who should decide?” question. A patient has a specific kind of moral right to make her own medical decisions. A surrogate has no analogous moral right to decide for someone else. We want the surrogate to make the decision because we believe that she has a relevant epistemological advantage over anyone else on the scene. If and when she has no such advantage or if she refuses or is unable to use it, then there might not be sufficient reason to let her be the decision-maker. (shrink)

Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In addition, the turn to (...) a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (shrink)

Cooperation and conversation in the public sphere may overcome historical and other barriers to rational argumentation. As an alternative to evidence-based medicine (EBM) and patient-centered care (PCC), the recent development of a modern version of person-centered medicine (PCM) signals an opportunity for a conversational pluralogue to replace parallel monologues between EBM and its critics, and the calls to EBM to debate its critics. This article draws upon elements of Habermas’s theory of communicative action in order to suggest the kind of (...) pluralogue that is required for stakeholders in modern medicine to benefit more from publicly conversing with each other than speaking alone or using debate to argue against each other. This reasoned perspective has lessons for all discourse when deep value-based and epistemological differences cannot be easily adjudicated. (shrink)