The General Medical Council (GMC) instructs doctors to act ‘reasonably’ in obtaining consent from patients. However, the GMC does not explain what it means to be reasonable: it is left to doctors to figure out the substance of this instruction. The GMC relies on the Supreme Court’s judgment in Montgomery v Lanarkshire Health Board; and it can be assumed that the judges’ idea of reasonability is adopted. The aim of this paper is to flesh out this idea of reasonability. This (...) idea is commonly personified as the audience that has to be satisfied by the doctor’s justification for offering, or withholding, certain treatments and related information. In case law, this audience shifted from a reasonable doctor to a ‘reasonable person in the patient’s position’; and Montgomery expands the audience to include ‘particular’ patients, too. Senior judges have clarified that the reasonable person is a normative ideal, and not a sociological construct; but they do not set out the characteristics of this ideal. John Rawls has conceived the reasonable person-ideal as one that pursues fair terms of co-operation with other members of society. An alternative ideal can be inferred from the feminist ethic of care. However, the reasonable patient from Montgomery does not align with either theoretical ideal; but, instead, is an entirely rational being. Such a conception conflicts with both real-life constraints on rationality and the doctor’s duty to care for the patient, and it challenges the practice of medicine. (shrink)

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)

There has been a radical turn towards ideals of patient autonomy and person-centred care, and away from historically entrenched forms of medical paternalism, in the last 50 years of nursing practice. However, along the way, some shades of grey between the areas of ideal patient participation and of outright patient non-participation have been missed. The current article constitutes an exploratory proof-of-concept study of the real-world traction of a distinction-straddling concept of ‘constrained participation’ and its two sub-concepts of ‘fought-for participation’ and (...) ‘forced-to participation’. In order to concretise these additions to the conceptual terrain of person-centred participation and its anti-theses, we apply them to themes in the care of vulnerable older adults. In the final section, we close by eliciting some characterological, educational and clinical implications of adding these new tools also to the conceptual repertoire of nursing practice and education. (shrink)

Increasing emphasis on patient self-management, including having patients advocate for their needs and priorities, is generally a good thing, but it is not always wanted or attainable by patients. The aim of this critical ethical review is to deepen the current discourse in patient self-advocacy by exposing various situations in which patients struggle to self-advocate. Using examples from oncology patient populations, we disambiguate different notions of self-advocacy and then present limits to the more demanding varieties (i.e., health-related, trust-based, and psychological); (...) we argue that these limits create ethical dilemmas with respect to whether it is always desirable to encourage patients to self-advocate. We conclude that self-advocacy can be both under and overrated with respect to how much it benefits the patient with cancer, with many instances being indeterminate. Ultimately, providers must understand the patient's perspective relative to the challenges they are experiencing and work with them to meet their needs. (shrink)

Recent articles published in this journal have highlighted the shortcomings of individualistic approaches to health promotion, and the potential contributions of relational analyses of autonomy to public health ethics. I argue that the latter helps to elucidate the former, by showing that an inadequate analysis of autonomy leads to misassignment of both forward-looking and backward-looking responsibility for health outcomes. Health promotion programmes predicated on such inadequate analyses are then ineffective, because they assign responsibility to agents whose social environment inhibits their (...) ability to act on such responsibilities; inequitable, because the social barriers to autonomous agency display a socio-economic gradient; and stigmatizing, because they license blaming of individuals for their own poor health without taking into account how reasonable it is to hold these individuals responsible, given the social barriers to autonomy they face. I further sketch how incorporating a relational understanding of autonomy could help to produce health promotion programmes that do not succumb to these difficulties, while avoiding coercive paternalism, exploring potential applications in ecological approaches to health promotion. (shrink)

Accounts of the value of patient choice in contemporary medical ethics typically focus on the act of choosing. Being the one to choose, it is argued, can be valuable either because it enables one to bring about desired outcomes, or because it is a way of enacting one’s autonomy. This paper argues that all such accounts miss something important. In some circumstances, it is having the opportunity to choose, not the act of choosing, that is valuable. That is because in (...) many situations whether one has, or is denied, that opportunity conveys how one is seen. In particular, it conveys whether or not one is seen as an equal and competent member of society. Adequately recognising this fact has implications for what healthcare professionals should do, ones that require a move away from the current focus on autonomy. The paper draws out these implications by focusing on patients who may struggle to be recognised as competent and equal members of society, and whose autonomy may thus itself sometimes be in question. (shrink)

Research from behavioural sciences shows that people reach decisions in a much less rational and well-considered way than was often assumed. The doctrine of informed consent, which is an important ethical principle and legal requirement in medical practice, is being challenged by these insights into decision-making and real-world choice behaviour. This article discusses the implications of recent insights of research on decision-making behaviour for the informed consent doctrine. It concludes that there is a significant tension between the often non-rational choice (...) behaviour and the traditional theory of informed consent. Responsible ways of dealing with or solving these problems are considered. To this end, patient decisions aids are discussed as suitable interventions to support autonomous decision-making. However, current PDAs demand certain improvements in order to protect and promote autonomous decision-making. Based on a conception of autonomy, we will argue which type of improvements are needed. (shrink)

In “Forced to be Free”, Neil Levy surveys the raft of documented decision-making biases that humans are heir to, and advances several bold proposals designed to enhance the patient's judgment. Gratefully, Levy is moved by the psychological research on judgment and decision-making that documents people's inaccuracy when identifying courses of action will best promote their subjective well-being. But Levy is quick to favour the patient's present preferences, to ensure they get “final say” about their treatment. I urge the opposite inclination, (...) raising doubts about whether the patient's “present preferences” are the best expression of their “final say”. When there is adequate evidence that people, by their own lights, overemphasize their present preferences about the future, we should carefully depreciate those preferences, in effect biasing them to make the right decision by their own lights. (shrink)

Tensions between respect for autonomy and paternalism loom large in Ferrario et al ’s discussion of artificial intelligence (AI)-based preference predictors.1 To be sure, their analysis (rightfully) brings out the moral matter of respecting patient preferences. My point here, however, is that their consideration of AI-based preference predictors in treatment of incapacitated patients opens more fundamental moral questions about the desirability of over-ruling considered patient preferences, not only if these are disclosed by surrogates, but possibly also in treating competent patients. (...) I do not advocate such an evolution—the moral desirability of that calls for a much broader debate, one in which the meaning of ‘doing good’ in medicine, and how this intersects with normative views on ‘the goal(s) of medicine’ would be central elements. While my aim in this piece is more modest, I nonetheless hope to approach it sideways, by indicating how the contribution by Ferrario et al reopens discussion about paternalism and the normativity of preferences in medicine. This follows from what these authors give as reason for endorsing this technology in care for incapacitated patients. Their argument for employing such tools in case of incapacitation is based on the premise that advice of surrogate decision-makers about care preferences is suboptimal because of their biased perception …. (shrink)

Der Beitrag analysiert Techniken öffentlicher Gesundheitskommunikation und skizziert im Ausblick Minimalbedingungen für ihre ethische Vertretbarkeit. Dazu wird erstens an einem aktuellen Beispiel veranschaulicht, wie mittels Text und Bild die Öffentlichkeit überzeugt werden soll, ein bestimmtes Gesundheitsverhalten an den Tag zu legen. Zweitens werden anhand der internationalen Ethik-Debatte fünf Grundtypen von Techniken in der Gesundheitskommunikation (Information, Argumentation, Persuasion, Manipulation und Zwang) rekonstruiert und entlang von Mittel, Zweck, Folgen für Adressaten sowie Implikationen für Autonomie aus ethischer Sicht unterschieden. Am besonders ambivalenten Beispiel (...) der Persuasion wird dann drittens diskutiert, welche ethischen Fallstricke es bei Gesundheitskommunikation zu bedenken gibt. Schließlich zeigen wir argumentativ auf, dass es in sensiblen bioethischen Themenfeldern wichtig ist, zwischen verschiedenen Techniken der Gesundheitskommunikation analytisch zu differenzieren. Ziel sollte die Ermöglichung einer fairen und transparenten Diskussion für breite Bevölkerungsgruppen sein. (shrink)

The necessity of consent is widely justified on the basis of the principle of respect for autonomy. Also, it is widely believed that shared decision making (SDM) is the practical device to seek patients’ consent for medical treatment. In this essay, I argue that SDM, while necessary, is insufficient for consent; because, in the paradigm of evidence-based medicine, SDM is contingent upon other practices to identify appropriate treatments that form the subjects of SDM. Indeed, case law emphasises normative decision-making practices (...) that precede SDM. Furthermore, case law supplies a nuanced understanding of SDM, which includes not only exchange of information but also attention to human vulnerability that persists despite formal retention of decision-making capacity. In addition, the law marks out a space in which people with capacity are absolutely entitled to self-determination. Thus, a four-step framework of decision making can be induced from legal doctrine. This legal framework corresponds to a construct of respect for autonomy that draws upon feminist theory. Feminist scholars have objected to the focus on individuals in traditional theories of autonomy; instead, they insist that people have to be considered in the context of their social influences and relationships. Feminists separate out four ideas of autonomy, and these ideas can be used to construct a four-layered model of respect for autonomy, in which each layer corresponds sequentially to a step in the legal framework of decision making. This model of respect for autonomy provides both conceptual clarity and theoretically robust justification for doctors’ various obligations in decision-making practices for consent. (shrink)

The decision of the High Court in Bell v Tavistock has excited considerable discussion about lawful consent for puberty-blocking drug treatment for children with gender dysphoria. The present paper draws attention to a wider question that surfaces through this case: is informed decision-making an adequate practical tool for seeking and obtaining patients’ consent for medical treatment? Informed decision-making engages the premises of the rational choice theory: that people will have well-crystallised health goals; and, if they are provided with sufficient information (...) about medical treatments, then they will be able to choose the treatment that satisfies their goals. Whilst appealing, the informed decision-making paradigm is assailed by various fallacies, which apply not only to children but also to adults. In Bell v Tavistock, the High Court seems to have recognised such fallacies, and it rejected informed decision-making as an adequate tool for consent from children with gender dysphoria. Similar considerations apply to adults in various situations. Thus, Bell v Tavistock can be seen as an attempt to refine the views on the consent that were expressed by the Supreme Court in Montgomery. It can be inferred that the Supreme Court did recognise the limitations of informed decision-making, but it did not develop this point. Further work is required to formulate an adequate model of decision-making, and Bell v Tavistock serves as a useful reminder to rethink informed decision-making as the device for consent. (shrink)

This paper addresses psychological factors that might interfere with informed consent on the part of stable patients as potential early-phase clinical trial participants. Thirty-six semistructured interviews with patients who had either diabetes or gout were conducted. We investigated stable patients’ attitudes towards participating in a fictitious first-in-human trial of a novel intervention. We focused on an in-depth analysis of those statements and explanations that indicated the existence of psychological factors impairing decision-making capacity. Three main themes emerged: insufficient comprehension of the (...) inherent logic of clinical trials, the recourse to trust over comprehension, and visceral factors that override deliberative process. Overall, our results indicate a limited psychological capacity on the part of stable patients to meet the requirements of informed consent as set by Declaration of Helsinki. A redesigned informed consent procedure should take account of these psychological realities. (shrink)

This article discusses the response of our ethics consultation service to an exceptional request by a patient to have his implantable cardioverter defibrillator removed. Despite assurances that the device had saved his life on at least two occasions, and cautions that without it he would almost certainly suffer a potentially lethal cardiac event within 2 years, the patient would not be swayed. Although the patient was judged to be competent, our protracted consultation process lasted more than 8 months as we (...) consulted, argued with, and otherwise cajoled him to change his mind, all to no avail. Justifying our at times aggressive paternalistic intervention helped us to reflect on the nature of autonomy and the dynamics of the legal, moral, and personal relationships in the clinical decision-making process. (shrink)

The general thrust of Neil Levy's paper is that a certain amount of paternalism should be viewed as compatible with liberalism.1 I am not quite convinced that what he is defending is properly paternalism. In addition, I am not entirely sure what his proposal is. Here are a few comments about several points in the paper.1. A possibly small question is worth raising when Levy says, ‘That is, the state may not interfere with individuals’ actions, even to promote their own (...) conception of the good. This claim is typically justified on epistemic grounds: individuals are best placed to judge for themselves how to pursue their conception of the good.’But I don't think that this is quite the right picture, though admittedly, it has often been suggested by liberals. Still: if it's a matter of ‘epistemic’ grounds, then that implies that there is something out there to be known, so that the question is, how do we go about knowing it? But this way of putting it is misleading. For liberalism says that whenever anybody, B, other than the individual we are considering, say A, claims that what is good for A is something ‘out there’—something that can strongly contradict what A thinks for his own case—then that outsider has no authority to override A's preference. This isn't epistemic—it's a moral position.If we were to talk of ‘epistemic’ here, presumably what is known in this case is how the individual …. (shrink)

BackgroundThe contemporary frameworks for clinical research require informed consent for research participation that includes disclosure of material information, comprehension of disclosed information and voluntary consent to research participation. There is thus an urgent need to test, and an ethical imperative, to test, modify or refine medications or healthcare plans that could reduce patient morbidity, lower healthcare costs or strengthen healthcare systems.MethodsConceptual review.DiscussionAlthough some allocation principles seem better than others, no single moral principle allocates interventions justly, necessitating combining the moral principles (...) into multiprinciple allocation systems. The urgency notwithstanding, navigating ethical challenges related to conducting corona virus disease (COVID-19) clinical trials is mandatory, in order to safeguard the safety and welfare of research participants, ensure autonomy of participants, reduce possibilities for exploitation and ensure opportunities for research participation. The ethical challenges to can be categorized as challenges in allocation of resources for research; challenges of clinical equipoise in relation to the research questions; challenges of understanding disclosed information in potential participants; and challenges in obtaining informed consent.ConclusionTo navigate these challenges, stakeholders need a delicate balance of moral principles during allocation of resources for research. Investigators need to apply information processing theories to aid decision-making about research participation or employ acceptable modifications to improve the informed consent process. Research and ethics committees should strengthen research review and oversight to ensure rigor, responsiveness and transparency. (shrink)

This paper examines the Court of Protection decision in Briggs v Briggs. It considers whether the approach of the Court, which gave effective decisive weight to a patient’s previously expressed wis...

Recently, bioethicists and the UNCRPD have advocated for supported medical decision-making on behalf of patients with intellectual disabilities. But what does supported decision-making really entail? One compelling framework is Anita Silvers and Leslie Francis’ mental prosthesis account, which envisions supported decision-making as a process in which trustees act as mere appendages for the patient’s will; the trustee provides the cognitive tools the patient requires to realize her conception of her own good. We argue that supported decision-making would be better understood (...) as a collaborative process, giving patients with intellectual disabilities the opportunity to make decisions in a respectful relationship with trusted others. We offer an alternative account of supported decision-making where the primary constraint is to protect the patient from domination by the trustee. This is advantageous in its preservation of the prospects for genuine collaboration, for the mental prosthesis approach ultimately reinforces a problematic ideal of isolated patient self-determination. (shrink)

A key objective of the law in the assessment of decision-making capacity in clinical settings is to allow clinicians and judges to avoid making value judgements about the reasons that patients use to refuse treatment. This paper advances two lines of argument in respect of this objective. The first is that authorities cannot rationally avoid significant evaluative judgements in the assessment of a patient’s own assessment of the facts of their case. Assessing reasoning is unavoidably value-laden. Yet the underlying motivation (...) behind clinicians’ and the law’s value-neutral aims, ie, the avoidance of undue paternalism, is worth preserving. That being so, the second line of argument will try to show that that underlying motivation is better served in a limited range of cases by embedding a ‘reversibility standard’ in the assessment process so that the patient can, if they wish, and in due course, bring about the consequences that they were prevented from realising as a result of a determination of incapacity. (shrink)

In the current era patient autonomy is enormously important. However, recently there has also been some movement back to ensure that trust in the doctor's skill, knowledge and virtue is not excluded in the process. These new nuances of informed consent have been referred to by terms such as beneficent paternalism, experience-based paternalism and we would add virtuous paternalism. The purpose of this paper is to consider the history and current problematic nature of counselling and consent. Starting with the tradition (...) founded by Hippocrates we trace and seek to understand how relevant aspects of the patient-doctor relationship have evolved under the influences of subsequent moral theories. Finally we tentatively endorse certain modes of counselling in the current era in order to promote morally sound, good clinical practice. (shrink)

Shared decision making has become the standard of care, yet there remains no consensus about how it should be conducted. Most accounts are concerned with threats to patient autonomy, and they address the dangers of a power imbalance by foregrounding the patient as a person whose complex preferences it is the practitioner's task to support. Other corrective models fear that this level of mutuality risks abdicating the practitioner's responsibilities as an expert, and they address that concern by recovering a nuanced (...) but genuinely directive clinical role. Cribb and Entwistle helpfully categorize models of shared decision making as ‘narrower’ and ‘broader’ and praise the latter's ‘open‐ended and fully dialogical ways of relating’. However, they stop short of providing a philosophical account of how that dialogue works. In this paper, a nurse–midwife and a philosopher collaborate to argue that the Socratic model of dialogue offers a solution to the practitioner–patient dilemma. In the Theaetetus, Socrates compares dialogical reasoning to ‘midwifery with all its standard features’. By means of a three‐way analogy, elements of midwifery practice are used to illuminate features of Socrates' claim that his dialogue is like midwifery; those features are then translated into an approach to shared decision making as the ‘midwifery of good thinking’ which both midwives and physicians would do well to adopt. A key concept that emerges is the need for practitioners to make a risk‐confidence assessment of the particular content of any decision to appropriately modulate their role in the practice of shared decision making. (shrink)

Cases of paternalism usually involve disagreement between the paternalist and the paternalized subject. But not all the disagreements that give rise to paternalism are of the same kind and, as a result, not all instances of paternalism are morally on a par. There is, in other words, a moral difference between different kinds of paternalism, which can be explained in terms of the nature of the disagreements that give rise to the paternalism in the first place. This paper offers a (...) novel account of how to characterize the nature of these disagreements such that we can explain this moral difference. (shrink)

In this article we argue that the principle of need, on some interpretations, could be used to justify the spending of publically funded health care resources on cognitive enhancement and that this also holds true for individuals whose cognitive capacities are considered normal.The increased, and to an extent, novel demands that the modern technology and information society places on the cognitive capacities of agents, e.g., regarding good and responsible decision-making, have blurred the line between treatment and enhancement. More specifically, it (...) has shifted upwards. As a consequence, principles of need on their most reasonable interpretations can be used to support publically funded cognitive enhancement. At least this is so, if broader aims than curing and ameliorating diseases are included in the goals of health care. We suggest that it would be plausible to see health care as accepting such broader goals already today. (shrink)

:Contemporary global governance is organized around an odd pairing: care and control. On the one hand, much of global governance is designed to reduce human suffering and improve human flourishing, with the important caveat that individuals should be allowed to decide for themselves how they want to live their lives. On the other hand, these global practices of care are also entangled with acts of control. Peacebuilding, public health, emergency aid, human rights, and development are expressions of this tension between (...) care and control. There is a concept that captures this tension: paternalism. Drawing on our moral intuitions, I argue that paternalism is the attempt by one actor to substitute his judgment for another actor's on the grounds that such an imposition will improve the welfare of the target actor. After discussing and defending this definition, I note how our unease with paternalism seems to grow as we scale up from the interpersonal to the international, which I argue owes to the evaporation of community and equality. After exploring the implications of this definition and distinguishing it from other forms of intervention, I consider how different elements of paternalism combine to generate different configurations. Specifically, I point to five dimensions that are most relevant for examining the paternalism found in contemporary global and humanitarian governance: the tools used to restrict another actor’s liberty ; the scope of the interference ; the purpose of the intervention ; the source of the paternalizer’s confidence ; and the mechanisms of accountability. These different elements often correlate historically, suggestive of two ideal types of global paternalism: strong and weak. Contemporary global and humanitarian governance is largely the weak variety: force is severely proscribed, interference is relatively restricted, the paternalizer’s confidence has epistemic roots, and accountability to local populations remains a noble but rarely practiced goal. I further speculate that a major reason for this difference is the effects of liberalism and rationalization. I use this taxonomy to suggest how two different global efforts to improve the lives of those peoples living in what were perceived to be unstable and illiberal territories — the civilizing missions of the nineteenth century and the peacebuilding operations of the post-Cold War period — exhibited different kinds of paternalism. I conclude by reflecting on the ethics of international paternalism. (shrink)

Rapid advancement of technologies continues to revolutionize healthcare foundations and outlook. Technological progress in medicine are not only continuing to improve quality of individual life but also generally improving quality of healthcare services. As a matter of fact, the most significant change in healthcare systems was the shift from standardized, patronizing and rigid physician–patient relationship to more patient-focused, personalized and participatory practice. With this shift came increased attention to the assurance of patient’s right to autonomy. Therefore, this article aims to (...) discuss principal problematic aspects of patient’s right to autonomy hereby the patient’s role in the context of technologies and innovation. It is argued, that one of the effective ways to ensure patient’s right to autonomy is implementation of legal instruments, such as informed consent, advance directives and Ulysses contracts. However, this article also proposes, that with a potential of new technologies and artificial intelligence, these legal instruments need to be reconsidered and transformed in more efficient and eligible model, presenting information in more individualized, appealing and convenient manner. (shrink)

Are there any deep or systematic connections between paternalism and people's rights? Perhaps the connection is definitional: part of what makes an action or policy paternalistic is that it violates a right. Or perhaps the connection is normative: paternalism is (always? often? only sometimes?) morally problematic because it violates people's rights (even if we don't define "paternalism" in terms of a rights violation). My main goal in this paper is to argue for the normative connection. Part of the task will (...) be to explain exactly what the normative connection is. That will involve answering the questions embedded in the claim as well as offering an account of the right(s) that is (are) connected to paternalism's normative status. (shrink)