Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to (...) decide offers a valuable opportunity to authorize research, by using an advance research directive. Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects. (shrink)

Next SectionThe personal identity problem expresses the worry that due to disrupted psychological continuity, one person’s advance directive could be used to determine the care of a different person. Even ethicists, who strongly question the possibility of the scenario depicted by the proponents of the personal identity problem, often consider it to be a very potent objection to the use of advance directives. Aiming to question this assumption, I, in this paper, discuss the personal identity problem’s relevance to the moral (...) force of advance directives. By putting the personal identity argument in relation to two different normative frameworks, I aim to show that whether or not the personal identity problem is relevant to the moral force of advance directives, and further, in what way it is relevant, depends entirely on what normative reasons we have for respecting advance directives in the first place. (shrink)

Ordinary Language Philosophy has largely fallen out of favour, and with it the belief in the primary importance of analyses of ordinary language for philosophical purposes. Still, in their various endeavours, philosophers not only from analytic but also from other backgrounds refer to the use and meaning of terms of interest in ordinary parlance. In doing so, they most commonly appeal to their own linguistic intuitions. Often, the appeal to individual intuitions is supplemented by reference to dictionaries. In recent times, (...) Internet search engine queries for expressions of interest have become quite popular. Apparently, philosophers attempt to surpass the limits of their own linguistic intuitions by appealing to experts or to factual uses of language. I argue that this attempt is commendable but that its execution is wanting. Instead of appealing to dictionaries or Internet queries, philosophers should employ computer-based linguistic corpora in order to confirm or falsify hypotheses about the factual use of language. This approach also has some advantages over methods employed by experimental philosophers. If the importance of ordinary language is stressed, the use of linguistic corpora is hardly avoidable. (shrink)

For people with Bipolar Affective Disorder, a self-binding (advance) directive (SBD), by which they commit themselves to treatment during future episodes of mania, even if unwilling, can seem the most rational way to deal with an imperfect predicament. Knowing that mania will almost certainly cause enormous damage to themselves, their preferred solution may well be to allow trusted others to enforce treatment and constraint, traumatic though this may be. No adequate provision exists for drafting a truly effective SBD and efforts (...) to establish such provision are hampered by very valid, but also paralysing ethical, clinical and legal concerns. Effectively, the autonomy and rights of people with bipolar are being 'protected' through being denied an opportunity to protect themselves. From a standpoint firmly rooted in the clinical context and experience of mania, this article argues that an SBD, based on a patient-centred evaluation of capacity to make treatment decisions (DMC-T) and grounded within the clinician-patient relationship, could represent a legitimate and ethically coherent form of self-determination. After setting out background information on fluctuating capacity, mania and advance directives, this article proposes a framework for constructing such an SBD, and considers common objections, possible solutions and suggestions for future research. (shrink)

Patients who are incompetent need a surrogate decision maker to make treatment decisons on their behalf. One of the main ethical questions that arise in this context is what standard ought to govern such decision making. According to the Substituted Judgment Standard, a surrogate ought to make the decision that the patient would have made, had he or she been competent. Although this standard has sometimes been criticized on the grounds of being difficult to apply, it has found wide appeal, (...) since it it is alleged to protect incompetent patients? right to autonomy. The main purpose of the thesis is to evaluate SJS, from a conceptual and ethical perspective. It argues that the traditional formulation of SJS is seriously incomplete, and discusses alternative ways of completing it. Moreover, it questions the received view on how SJS should be morally justified, by offering arguments against the view that decision making in accordance with this standard extends the patient's opportunities for self-determination. Instead it suggests a virtue-ethical approach according to which the moral point of SJS-based decision making is not to protect the patient's interests, but to express respect for person. The thesis also critically assesses empirical studies according to which surrogates often fail to correctly predict patients? actual treatment preferences. It is shown that such results cannot, for a number of reasons, support the conclusion drawn that surrogates are ill-equipped to make decisions that comply with SJS. (shrink)

This paper scrutinizes the tension between individuals’ rights and paternalism. I will argue that no normative account that includes rights of individuals can justify hard paternalism since the infringement of a right can only be justified with the right or interest of another person, which is never the case in hard paternalism. Justifications of hard paternalistic actions generally include a deviation from the very idea of having rights. The paper first introduces Tom Beauchamp as the most famous contemporary hard paternalist (...) by outlining his moral theory (principlism) and showing why it, as it stands, has to allow for hard paternalism. Secondly, the paper focuses on the notion of rights within principlism. I will employ traditional theories of rights to make sense of rights in principlism. Unfortunately, this attempt fails. In the third part, then, I claim that rights can only be limited with reference to the rights or interests of others. This structure is the very point of rights, it is their bite. I will argue for this claim and show its implications. The most important implication is that not only principlism, but every normative theory that includes rights of individuals, has to abolish hard paternalism. (shrink)

Debate over the relationship of law and bioethics is growing - what the relationship has been and what it should be in the future. While George Annas has praised law and rights-talk for creating modern bioethics, Carl Schneider has instead blamed law for hijacking bioethics and stunting moral reflection. Indeed, as modern bioethics approaches the 40-year mark, historians of bioethics are presenting divergent accounts. In one account, typified by Albert Jonsen, bioethics largely grew out of philosophy and theology, not law. (...) In another account, law has deeply shaped bioethics from the start, forging its central commitment to the rights of patients and research subjects and the fields imposition of broad fiduciary responsibilities on health care professionals and researchers.In addition to debating how to properly describe laws historical relationship to bioethics, commentators have argued over whether laws influence in bioethics is now good or bad. (shrink)

The field of clinical bioethics strongly advocates for the use of advance directives to promote patient autonomy, particularly at the end of life. This paper reports a study of clinical bioethicists’ perceptions of the professional consensus about advance directives, as well as their personal advance care planning practices. We find that clinical bioethicists are often sceptical about the value of advance directives, and their personal choices about advance directives often deviate from what clinical ethicists acknowledge to be their profession’s recommendations. (...) Moreover, our respondents identified a pluralistic set of justifications for completing treatment directives and designating surrogates, even while the consensus view focuses on patient autonomy. Our results suggest important revisions to academic discussion and public-facing advocacy about advance care planning. (shrink)

Intimacy contributes to our well-being and extends into older age, despite cognitive or physical impairment. However, the ability to enjoy intimacy and express sexuality is often compromised—or even controlled—when one moves into residential aged care. The aim of this study was to identify what factors influence senior residential aged care staff when they make decisions regarding resident intimate relationships and sexual expression. The study used vignette methodology and a postal survey to explore reactions to a fictionalised case study of a (...) couple—Norm and Carol—who develop a close, mutually satisfying relationship. Staff were first asked whether they would intervene in the relationship. Using an innovative approach, several variations to the case study were then presented to explore whether views about intervening changed according to varying contextual factors. Findings indicated that over 90% of respondents initially agreed that the relationship should continue, and only 10% indicated they would intervene. However, when the case study was varied, respondents indicated they were more likely to intervene, particularly if Norm was exhibiting distress in Carol’s presence (89%), but also if Norm was married and his wife was living in the community (40%). Other factors including level of cognitive impairment and family disapproval were also found to influence staff views. This study provides insight into how residential aged care staff make decisions regarding the intimacy and sexuality of older people living in residential aged care and how personal views and values likely guide practice in the absence of formal policies. (shrink)

Distributive egalitarians believe that distributive justice is to be explained by the idea of distributive equality (DE) and that DE is of intrinsic value. The socio-relational critique argues that distributive egalitarianism does not account for the “true” value of equality, which rather lies in the idea of “equality as a substantive social value” (ESV). This paper examines the socio-relational critique and argues that it fails because – contrary to what the critique presupposes –, first, ESV is not conceptually distinct from (...) DE, and second, the idea of ESV cannot serve as a “foundation” or “root” of distributive egalitarianism. (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)