IntroductionExtended decision -making through the use of proxy decision -makers has been enshrined in a range of International Codes, Professional Guidance and Statute,For example, the UK Mental Capacity Act section 9.1; The General Medical Council ; the US National Guardianship Association ; Nuffield Council on Bioethics ; CIOMS-WHO section 6. Court cases such as Re Quinlan in the US have also contributed to establishing the groundings for the legal status of the proxy, albeit in terms of who might be suitable (...) as a proxy in cases where there was no clear appointment of them by a still competent individual. and is now widely seen as a useful means through which we can exercise control over decisions that affect our lives when we have lost capacity to make these decisions for ourselves.I will here limit myself to discussion of proxy consent for adults appointed prior to the loss of competence by the person they are acting as proxy for. The issue of p. (shrink)

This articles assesses the arguments that bioethicists have presented for the view that patient’ autonomy has value over and beyond its instrumental value in promoting the patients’ wellbeing. It argues that this view should be rejected and concludes that patients’ autonomy should be taken to have only instrumental value in medicine.

When it is considered to be in their best interests, withholding and withdrawing life-supporting treatment from non-competent physically ill or injured patients – non-voluntary passive euthanasia, as it has been called – is generally accepted. A central reason in support of the procedures relates to the perceived manner of death they involve: in non-voluntary passive euthanasia death is seen to come about naturally. When a non-competent psychiatric patient attempts to kill herself, the mental health care providers treating her are obligated (...) to try to stop her. Yet it has been suggested that death by suicide can be a part of the natural course of a severe mental illness. Accordingly, if the perceived naturalness of the deaths occurring in connection with non-voluntary passive euthanasia speaks for their moral permissibility, it could be taken that a similar reason can support the moral acceptability of the suicidal deaths of non-competent psychiatric patients. In this article, I consider whether the suicidal death of a non-competent psychiatric patient would necessarily be less natural than those of physically ill or injured patients who die as a result of non-voluntary passive euthanasia. I argue that it would not. (shrink)

In healthcare ethics there is a discussion regarding whether autonomy of personal preferences, what sometimes is referred to as authenticity, is necessary for autonomous decision-making. It has been argued that patients’ decisions that lack sufficient authenticity could be deemed as non-autonomous and be justifiably overruled by healthcare staff. The present paper discusses this issue in relation certain psychiatric disorders. It takes its starting point in recent qualitative studies of the experiences and thoughts of patients’ with anorexia nervosa where issues related (...) to authenticity seem particularly relevant. The paper examines different interpretations of authenticity relevant for autonomy and concludes that the concept, as it has been elaborated in recent debate, is highly problematic to use as a criterion for autonomous decision-making in healthcare. (shrink)

This article critically examines, and ultimately rejects, the best interest standard as the predominant, go-to ethical and legal standard of decision making for children. After an introduction to the presumption of parental authority, it characterizes and distinguishes six versions of the best interest standard according to two key dimensions related to the types of interests emphasized. Then the article brings three main criticisms against the best interest standard: (1) that it is ill-defined and inconsistently appealed to and applied, (2) that (...) it is unreasonably demanding and narrow, and (3) that it fails to respect the family. Finally, it argues that despite the best interest standard’s potent rhetorical power, it is irreparably encumbered by too much inconsistency and confusion and should be rejected. (shrink)

Margaret Mohrmann, Paul Lauritzen, and Sumner Twiss raise questions about my account of basic interests, liberal theory, and the challenges of multiculturalism as developed in "Children, Ethics, and Modern Medicine." Their questions point to foundational issues regarding the justification and limitation of parental authority to make decisions on behalf of children in medical and other contexts. One of the central questions in that regard is whether adults' decisions deserve to be respected, especially when they seem contrary to a child's or (...) adolescent's basic interests. Questions about respect, in turn, focus attention on others' decisions about what seems good for families and children, decisions that may be paternalistic or utilitarian. Such decisions are further complicated by a child's or adolescent's budding autonomy and need for respect and recognition. Pediatric bioethics grounded in an account of a child's basic interests produces a theory of negative and positive rights for assessing adults' actions in relation to children, especially (but not only) when adults demand respect in their expressions of care. (shrink)

Standard views on surrogate decision making present alternative ideal models of what ideal surrogates should consider in rendering a decision. They do not, however, explain the physician''s responsibility to a patient who lacks decisional capacity or how a physician should regard surrogates and surrogate decisions. The authors argue that it is critical to recognize the moral difference between a patient''s decisions and a surrogate''s and the professional responsibilities implied by that distinction. In every case involving a patient who lacks decisional (...) capacity, physicians and the treatment team have to make judgments about the appropriateness of both the surrogate and the surrogate''s decision. They have to assess the surrogate''s decisional capacity and attitude toward the patient as well as the reasons that support the surrogate''s decision. This paper provides a model for acceptable surrogate decisions and a standard for blocking inappropriate surrogates. Only decisions based on widely shared reasons are allowable for surrogate refusal of highly beneficial treatment. (shrink)

Background Denmark has implemented a comprehensive, nationwide pharmaceutical information system, and this system has been evaluated by the Danish Council of Ethics. The system can be seen as an exemplar of a comprehensive health information system for clinical use. Analysis The paper analyses 1) how informed consent can be implemented in the system and how different implementations create different impacts on autonomy and control of information, and 2) arguments directed towards justifying not seeking informed consent in this context. Results and (...) Conclusion Based on the analysis a heuristic is provided which enables a ranking and estimation of the impact on autonomy and control of information of different options for consent to entry of data into the system and use of data from the system. The danger of routinisation of consent is identified. The Danish pharmaceutical information system raises issues in relation to autonomy and control of information, issues that will also occur in relation to other similar comprehensive health information systems. Some of these issues are well understood and their impact can be judged using the heuristic which is provided. More research is, however needed in relation to routinisation of consent. (shrink)

In this article, I present an argument that suggests neuroscience should inform judgments of decision-making capacity. First, I review key behavioral and neurocognitive data to demonstrate that neuroscientific tests might be predictive of decision-making capacity, and that these tests might inform clinical judgments of capacity. Second, I argue that, consistent with the principles of autonomy and justice, such data should inform judgements of decision-making capacity. While the neuroscience of decision-making capacity still requires time to mature, there is strong reason to (...) believe that neuroscience might assist clinicians in adjudicating difficult cases in the future. This article focuses on the assessment of capacity in brain injury patients who have profound communication impairments, however, the overarching aim of the article is to highlight the potential use of neuroscience to improve our understanding of the relationship between cognition and decision-making capacity. (shrink)

This paper takes a novel approach to the active bioethical debate over whether advance medical directives have moral authority in dementia cases. Many have assumed that advance directives would lack moral authority if dementia truly produced a complete discontinuity in personal identity, such that the predementia individual is a separate individual from the postdementia individual. I argue that even if dementia were to undermine personal identity, the continuity of the body and the predementia individual’s rights over that body can support (...) the moral authority of advance directives. I propose that the predementia individual retains posthumous rights over her body that she acquired through historical embodiment in that body, and further argue that claims grounded in historical embodiment can sometimes override or exclude moral claims grounded in current embodiment. I close by considering how advance directives grounded in historical embodiment might be employed in practice and what they would and would not justify. (shrink)

Background Doctors sometimes encounter parents who object to prescribed treatment for their children, and request suboptimal substitutes be administered instead. Previous studies have focused on parental refusal of treatment and when this should be permitted, but the ethics of requests for suboptimal treatment has not been explored. Methods The paper consists of two parts: an empirical analysis and an ethical analysis. We performed an online survey with a sample of the general public to assess respondents’ thresholds for acceptable harm and (...) expense resulting from parental choice, and the role that religion played in their judgement. We also identified and applied existing ethical frameworks to the case described in the survey to compare theoretical and empirical results. Results Two hundred and forty-two Mechanical Turk workers took our survey and there were 178 valid responses. Respondents’ agreement to provide treatment decreased as the risk or cost of the requested substitute increased. More than 50% of participants were prepared to provide treatment that would involve a small absolute increased risk of death for the child and a cost increase of US$<500, respectively. Religiously motivated requests were significantly more likely to be allowed. Existing ethical frameworks largely yielded ambiguous results for the case. There were clear inconsistencies between the theoretical and empirical results. Conclusion Drawing on both survey results and ethical analysis, we propose a potential model and thresholds for deciding about the permissibility of suboptimal treatment requests. (shrink)

In this paper I discuss the problem of the Kantian line. The problem arises because the locus of value in Kantian ethics is rationality, which (counterintuitively) seems to entail that there are no duties to groups of beings like children. I argue that recent attempts to solve this problem by Wood and O’Neill overlook an important aspect of it before posing my own solution.

Sport-related neurotrauma annually affects millions of athletes worldwide. The return-to-play protocol (RTP) is the dominant strategy adopted by sports leagues and organizations to manage one type of sport-related neurotrauma: concussions. RTPs establish guidelines for when athletes with concussions are to be removed from competition or practice, and when they can return. RTPs are intended to be neuroprotective, and to protect athletes from some of the harms of sport-related concussions, but there is athlete resistance to and noncompliance with RTPs. This prompts (...) consideration of whether RTPs, as employed in adult, professional sports, are paternalistic, and if they are, whether they are objectionably so. If RTPs are uniquely effective at protecting current or future athlete autonomy, they might be justified by paternalism. I conclude that RTPs are paternalistic in their effects, but are not adequately justified, and thus they are objectionable. (shrink)

Part of the standard protection of decisionally incapacitated research subjects is a prohibition against enrolling them unless surrogate decision makers authorize it. A common view is that surrogates primarily ought to make their decisions based on what the decisionally incapacitated subject would have wanted regarding research participation. However, empirical studies indicate that surrogate predictions about such preferences are not very accurate. The focus of this article is the significance of surrogate accuracy in the context of research that is not expected (...) to benefit the research subject. We identify three morally relevant asymmetries between being enrolled and not being enrolled in such non-beneficial research, and conclude that when there is a non-negligible probability that surrogates’ predictions are wrong, it will generally be better to err on the side of not authorizing enrollment. (shrink)

According to the Substituted Judgment Standard a surrogate decision maker ought to make the decision that the incompetent patient would have made, had he or she been competent. This standard has received a fair amount of criticism, but the objections raised are often wide of the mark. In this article we discuss three objections based on empirical research, and explain why these do not give us reason to abandon the Substituted Judgment Standard.

We argue that animalism is the only materialist account of personal identity that can account for the autonomy that we typically think of ourselves as possessing. All the rival materialist theories suffer from a moral version of the problem of too many thinkers when they posit a human person that overlaps a numerically distinct human animal. The different persistence conditions of overlapping thinkers will lead them to have interests that conflict, which in many cases prevents them both from autonomously forming (...) and acting on the same intentions. These problems are exacerbated by problems of self-reference plaguing the overlapping thinkers. We contend that the impossibility of simultaneous autonomous action by animals and persons provides a reason to favor animalism over Neo-Lockeanism, Four-Dimensionalism, Constitution theory, and brain-size views of the person. We anticipate and reject arguments that the autonomy of the person and the animal can be shown to be compatible by relying upon either the Parfitian thesis that identity isn’t what matters or claiming that animals acquire the interests of the person they constitute. (shrink)

The central claim of this paper is that American states’ use of so-called “triggering conditions” to regulate surrogate decision-making authority in end-of-life care leaves unresolved a number of important ethical and legal considerations regarding the scope of that authority. The paper frames the issue with a case set in a jurisdiction in which surrogate authority to withdraw life-sustaining treatment is triggered by two specific clinical conditions. The case presents a quandary insofar as the clinical facts do not satisfy the triggering (...) conditions, and yet both the appropriate surrogates and the care team agree that withdrawal of life-sustaining treatment is in the best interest of the patient. The paper surveys applicable law across the 50 states and weighs the arguments for and against the inclusion of such triggering conditions in relevant legal regimes. The paper concludes by assessing the various legal and policy options states have for regulating surrogate decision-making authority in light of the moral considerations, and notes the possibility for conflict within ethics teams arising from the potential tension between prudence, risk-aversion, and moral obligation. (shrink)

Legal restrictions of the right to self-determination increasingly pretend to be compatible with the liberal concept of autonomy: they act upon a ‘soft’ or autonomy-orientated paternalistic rationale. Conventional liberal critique of paternalism turns out to be insensitive to the intricate normative problems following from ‘soft’ or ‘libertarian’ paternalism. In fact, these autonomy-oriented forms of paternalism could actually be even more problematic and may infringe liberty rights even more intensely than hard paternalistic regulation. This paper contributes to the systematic differentiation of (...) soft and hard paternalism by discussing the (legal) concept of autonomy and elaborates the moral and legal limits of autonomy-orientated paternalism. (shrink)

Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

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

We aim to establish the following claim: other factors held constant, the relative weights of the epistemic burdens of competing treatment options serve to determine the options that patient surrogates pursue. Simply put, surrogates confront an incentive, ceteris paribus, to pursue treatment options with respect to which their knowledge is most adequate to the requirements of the case. Regardless of what the patient would choose, options that require more knowledge than the surrogate possesses (or is likely to learn) will either (...) be neglected altogether or deeply discounted in the surrogate’s incentive structure. We establish this claim by arguing that the relation between epistemic burdens and incentives in decision-making is a general feature of surrogate decision-making. After establishing the claim, we draw out some of the implications for surrogate decision-making in medicine and offer philosophical and psychological explanations of the phenomenon. (shrink)

A review of medical ethics literature relating to the importance of the participation of patients in decision-making introduces the role of rights-based mediation as a voluntary process now being developed innovatively in America. This is discussed in relation to the theory of communicative ethics and moral personhood. References are then made to the work of medical ethics committees and the role of mediation within these. Finally it is suggested that mediation is part of an eirenic ethic already being used informally (...) in good patient care, and that there is a case for developing it further. (shrink)

Heroin prescription involves the medical provision of heroin in the treatment of heroin addiction. Rudimentary clinical trials on that treatment modality have been carried out and others are currently underway or in development. However, it is questionable whether subjects considered for such trials are mentally competent to consent to them. The problem has not been sufficiently appreciated in ethical and clinical discussions of the topic. The challenges involved throw new light on the role of value and accountability in contemporary discussions (...) of mental competence. (shrink)

What is the proper role of a clinical ethics consultant’s religious beliefs in forming recommendations for clinical ethics consultation? Where Janet Malek has argued that religious belief should have no influence on the formation of a CEC’s recommendations, Clint Parker has argued a CEC should freely appeal to all their background beliefs, including religious beliefs, in formulating their recommendations. In this paper, I critique both their views by arguing the position envisioned by Malek puts the CEC too far from religion (...) and the position envisioned by Parker puts the CEC too close. For a CEC to give recommendations about what is morally prohibited, permissible, or obligatory in the clinic, I propose a view of the CEC that is neither religious nor non-religious but quasi-religious. I argue that a quasi-religious approach avoids the problems of both religious and non-religious views while preserving their benefits. Additionally, a quasi-religious view resists the marginalization of “religious” traditions that occurs when secular ethicists come to think of their approach as somehow distinctly non-religious. (shrink)

A ‘Ulysses arrangement’ (UA) is an agreement where a patient may arrange for psychiatric treatment or non-treatment to occur at a later stage when she expects to change her mind. In this article, I focus on ‘competence-insensitive’ UAs, which raise the question of the permissibility of overriding the patient’s subsequent decisionally competent change of mind on the authority of the patient’s own prior agreement. In “The Ethical Justification for Ulysses Arrangements”, I consider sceptical and supportive arguments concerning competence-insensitive UAs, and (...) argue that there are compelling reasons to give such UAs serious consideration. In “Decisional Competence and Legal Capacity in UAs”, I examine the nature of decisional competence and legal capacity as they arise in UAs, an issue neglected by previous research. Using the distinctions which emerge, I then identify the legal structure of a competence-insensitive UA in terms of the types of legal capacity it embodies and go on to explain how types of legal capacity might be shared between the patient and a trusted other to offer support to the patient in the creation and implementation of a competence-insensitive UA. This is significant because it suggests possibilities for building patient support mechanisms into models of legal UAs, which has not addressed in the literature to date. Drawing on this, in “Using Insights from the Competence/Capacity Distinction to Enhance Patient Support in UAs”, I offer two possible models to operationalize competence-insensitive UAs in law that allow for varying degrees of patient support through the involvement of a trusted other. Finally, I outline some potential obstacles implementing these models would face and highlight areas for further research. (shrink)

Respect for autonomy is a central moral principle in bioethics. The concept of autonomy can be construed in various ways. Under the non-ideal conceptualization proposed by Beauchamp and Childress, everyday choices of generally competent persons are autonomous to the extent that they are intentional and are made with understanding and without controlling influences. It is sometimes suggested that authenticity is important to personal autonomy, so that inauthenticity prevents otherwise autonomous persons from making autonomous decisions. Building from Beauchamp and Childress’s theory, (...) this article develops a non-ideal authenticity-based conceptualization of personal autonomy. Factors that indicate inauthentic decision-making are explicated, and the full concept is defended from three expected objections. The theory is then tested on a paradigm case which has concerned theorists and practitioners for some time, namely the possible inauthenticity of anorexia nervosa patients’ decision-making. It is concluded that the theory seems to be fruitful in analyses of the degree of autonomy of patients’ decision-making, and that it succeeds in providing reliable action-guidance in practical contexts. (shrink)

Part I of the dissertation examines the cognitive aspects of autonomy. The central question concerns what kind of cognitive capacity autonomy is. It will be argued that the concept of autonomy is best understood in terms of a metacognitive capacity of the individual. It is argued that metacognition has two components: procedural reflexivity and metarepresentation. Metarepresentation in turn can be divided into inferential reflexivity and other-attributiveness. These two components are essential for autonomy. Particular emphasis is put on procedural reflexivity. Further, (...) since the essential function of metacognition is control, it is argued that the concept of autonomy, understood as a metacognitive capacity, can be interpreted in terms of control. Issues arising from empirical data from neuroscience on functional, as well as impaired, metacognition, and on undermined autonomy, are dealt with. It is argued that autonomy cannot be determined with respect to subjective conditions. Neurological impairments, like Anton’s Syndrome, dementia, and thought insertion in schizophrenia, are put forward in support of this claim. To determine autonomy we require external conditions. In order to determine whether an individual is autonomous, both the metacognitive status of the individual and the external setting must be considered, since they are in interplay and consequently influence each other. In Part II, the analysis put forward in Part I is applied to Swedish healthcare. It is argued that the distinction between autonomy as a right and as a capacity must be explicit in order to understand what autonomy means and to deal with it effectively in healthcare practice. A discussion about whether or not the patient’s right to autonomy sometimes tends to be over-emphasized in healthcare is put forward. Special emphasis is placed on psychitaric issues such as deinstitutionalization and participation. Following the closure of the mental hospitals, deinstitutionalization and community-based care have become central topics in psychiatry. At the same time, the implementation of such care can be demanding for patients suffering from a persistent mental disorder. In part II it is also suggested that the metacognitive account of the concept of autonomy might help clarify the criteria governing coercive care. Finally, some suggestions concerning developments and improvements in Swedish healthcare, especially in psychiatry, where the concept of autonomy is important but problematic, are put forward. (shrink)