In this chapter, our focus is the role played by notions of rationality in the diagnosis of mental disorders, and in the practice of overriding patient autonomy in psychiatry. We describe and evaluate different hypotheses concerning the relationship between rationality and diagnosis, raising questions about what features underpin psychiatric categories. These questions reinforce widely held concerns about the use of diagnosis as a justification for overriding autonomy, which have motivated a shift to mental incapacity as an alternative justification. However, this (...) approach too has recently been criticized from a mental disability rights perspective. Our analysis of the relationship between mental capacity and rationality is used to illuminate these concerns, and to investigate further the relationship between rationality and psychiatric diagnosis. (shrink)

This paper argues that it will be important for new genomic technologies to recognize the limits of traditional approaches to informed consent, so that other-regarding implications of genomic information can be properly contextualized and individual rights respected. Respect for individual autonomy will increasingly require dynamic consideration of the interrelated dimensions of individual and broader community interests, so that the interests of one do not undermine fundamental interests of the other. In this, protection of individual rights will be a complex interplay (...) between individual and community concerns. (shrink)

This paper explores some of the values that underpin health care and how these relate more specifically to the values and ethics of palliative care. The paper focuses on the concept of autonomy because autonomy has emerged as a foundational concept in contemporary health care ethics and because this is an opportunity to scratch the surface of this concept in order to reveal something of its complexity, a necessary precaution when applying the concept to the context of palliative care. The (...) paper begins with a theoretical discussion of autonomy exploring an aspect of its contemporary meaning and relevance to health care. The second part of the paper focuses more closely on how the principle of respect for autonomy can be applied in the context of palliative care. In this section an ethical framework is employed to explore a practical application of this principle within a broader context of respect for persons. (shrink)

In this chapter, I articulate the structure of a general concept of autonomy and then reply to possible objections with reference to Ulysses arrangements in psychiatry. The line of argument is as follows. Firstly, I examine three alternative conceptions of autonomy: value-neutral, value-laden, and relational. Secondly, I identify two paradigm cases of autonomy and offer a sketch of its concept as opposed to the closely related freedom of action and intentional agency. Finally, I explain away the autonomy paradox, to which (...) the previously identified pair of paradigm cases seems to give rise in the context of mental disorder. By addressing this paradox, we learn two valuable lessons. The first is about the relationships between the three conceptions of autonomy above. The second is about the relationship between autonomy and mental disorder. (shrink)

The ethics of involving persons with cognitive impairments and/or mental illness in research continues to gain academic and public attention. Concerns about the ability of such persons to provide ethically and legally valid consent and about the appropriateness of their research involvement in certain categories of studies have resulted in publication of guidelines, position papers, standards, and court decisions. These analyses address not only when and from whom informed consent may be obtained but also under what conditions it is ethically (...) permissible to involve persons in research who are too decisionally impaired to provide their own consent.It is an advance in research ethics that there is heightened appreciation of the need for greater protections for, and possibly research participation limitations on, persons unable to give their own consent. In our zeal to protect potentially vulnerable subjects, however, we must craft new protections carefully. Prudence is required in shaping and implementing any new protections. (shrink)

The question of when we have justification for overriding ordinary, everyday decisions of persons with dementia is considered. It is argued that no single criterion for competent decision-making is able to distinguish reliably between decisions we can legitimately override and decisions we cannot legitimately override.

There is an emerging experimental trend in bioethics and neuroethics. We briefly review several topics in this trend and discuss how the existing and future studies can have normative implications related to bioethical/neuroethical issues. Particularly, we consider three major ways to draw such implications; (1) contributing to conceptual analysis and philosophical (counter-)evidence, (2) figuring out the unreliability of moral thinking and thereby providing a debunking argument, and (3) estimating the feasibility of ethical norms and policies.

ZusammenfassungSchein-Elemente in der Betreuung von Menschen mit Demenz erobern den Markt. Über deren Legitimität scheiden sich die Geister. Der Vorwurf der Täuschung wiegt schwer. Diese Arbeit analysiert, ob der Einsatz von Schein-Elementen moralisch zulässig ist. Dazu folgt einleitend eine Charakterisierung der Schein-Elemente und eine Stellungnahme zu ihrem Einfluss auf die Lebensqualität von Menschen mit Demenz. Im Analyseteil betrachte ich die Täuschung aus deontologischer und utilitaristischer Perspektive. Dazu dienen das Prinzip der Doppelwirkung, „the experience machine“ sowie Dworkins Margo. Dabei stelle ich (...) fest, dass sowohl die Täuschungsform als auch der Einsatzzweck relevant für die Legitimitätsbestimmung sind. Die Gestaltungsauthentizität beweist sich dabei als relevanter Indikator zur Bestimmung des Irreführungsgrades. Während sich aus deontologischer und aus utilitaristischer Sicht die bloß in Kauf genommene Irreführung als bedenkenlos und die Lüge in diesem Kontext als verboten zeigt, herrscht über die intendierte Irreführung Uneinigkeit. Diesen Streitfall löse ich anhand der gewonnenen Erkenntnisse über das, was MmD autonom wollen könnten. Den erarbeiteten Beurteilungsvorschlag runde ich mit einer Empfehlung an Institutionen, die Schein-Elemente einsetzen wollen, und einigen weiterführenden Gedanken ab. (shrink)

Should advance directives (ADs) such as living wills be employed to direct the care of the severely demented? In considering this question, I focus primarily on the claims of Rebecca Dresser who objects in principle to the use of ADs in this context. Dresser has persuasively argued that ADs are both theoretically incoherent and ethically dangerous. She proceeds to advocate a Best Interest Standard as the best way for deciding when and how the demented ought to be treated. I put (...) forth a compromise position: both ADs and the Best Interest Standard have roles to play in guiding the care of the severely demented. (shrink)

It has been argued that, on Kantian grounds, pedophiles, rapists and murderers are morally obligated to take their own lives prior to committing a violent action that will end their moral agency. That is, to avoid destroying the agent's moral life by performing a morally suicidal action, the agent, while he still is a moral agent, should end his body's life. Although the cases of dementia and the morally reprehensible are vastly different, this Kantian interpretation might be useful in the (...) debate on the permissibility of suicide for those facing dementia's effects. If moral agents have a duty to act as moral agents, then those who will lose their moral identity as moral agents have an obligation to themselves to end their physical lives prior to losing their dignity as persons. (shrink)

In recent papers, I defend the intrinsic value of the interesting, and the intrinsic disvalue of the boring. My arguments introduce two claims with important implications for discussions of the quality of life. The first is that when it comes to experiences, there’s more value at stake than pleasure alone. The second is that there is value to cognitive engagement itself, even when it is unstructured by desires or reasons. This paper explores the important consequences these conclusions have for how (...) we appraise the quality of life of subjects with dramatically impaired cognitive capacities (such as patients with advanced Alzheimer’s and patients in a persistent vegetive state). I examine whether such groups are capable of experiencing the interesting and, by extension, what degrees of self-awareness are required to experience the kind of cognitive engagement at stake in interesting experiences. (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)

In this paper, we examine the case of psychedelic medicine for Alzheimer’s disease and related dementias (AD/ADRD). These “mind-altering” drugs are not currently offered as treatments to persons with AD/ADRD, though there is growing interest in their use to treat underlying causes and associated psychiatric symptoms. We present a research agenda for examining the ethics of psychedelic medicine and research involving persons living with AD/ADRD, and offer preliminary analyses of six ethical issues: the impact of psychedelics on autonomy and consent; (...) the impact of “ego dissolution” on persons experiencing a pathology of self; how psychedelics might impact caregiving; the potential exploitation of patient desperation; institutional review boards’ orientation to psychedelic research; and methods to mitigate inequity. These ethical issues are magnified for AD/ADRD but bear broader relevance to psychedelic medicine and research in other clinical populations. (shrink)

Zusammenfassung Der Begriff der Privatheit markiert eine erstaunliche Leerstelle in der Diskussion um die Pflege von Menschen mit Demenz (MmD). Der sonst intensiv geführte pflegeethische Diskurs über Fragen der Privatheit scheint hier nahezu vollständig zu verstummen, so als verlören MmD im Verlauf ihrer Erkrankung jedes nachvollziehbare Interesse an einer Privatsphäre und verfügten über keinerlei privaten Bereich mehr, den man bei ihrer pflegerischen Versorgung beachten oder schützen müsste. Eine solche Vorstellung widerspricht allerdings nicht nur verbreiteten moralischen Intuitionen, sondern auch den Auffassungen (...) und Bedürfnissen der Betroffenen selbst. Vor diesem Hintergrund gehen wir der Frage nach, inwieweit sich die Bedeutung von Privatheit für MmD ethisch verständlich und plausibel machen lässt. Zu diesem Zweck werden zunächst die Herkunft und die verschiedenen Bedeutungsdimensionen des Privatheitsbegriffs selbst umrissen, um anschließend seine Schwierigkeiten und Grenzen im Kontext demenzieller Erkrankungen aufzuzeigen. Wie sich dabei herausstellt, kann insbesondere der ausgeprägte Autonomiebezug vorherrschender liberaler Privatheitskonzepte ein erhebliches Hindernis für eine angemessene Konzeptualisierung der Bedeutung der Privatheit für MmD darstellen. Aus diesem Grund loten wir im Anschluss unterschiedliche Möglichkeiten aus, wie sich der „Wert des Privaten“ im Kontext demenzieller Erkrankungen auch losgelöst vom Recht auf individuelle Selbstbestimmung konzeptualisieren ließe. Während autonomiebasierte Konzepte von Privatheit in frühen Stadien noch tragen mögen, wird mit Blick auf den weiteren Krankheitsverlauf daher auch der Relevanz von erkennbaren persönlichen Präferenzen sowie objektiven Bedingungen von Würde und Wohlergehen nachgegangen. Auf diesem Weg lässt sich differenziert aufzeigen, inwiefern Privatheit auch für MmD von Bedeutung sein und im pflegerischen Umgang mit ihnen angemessen berücksichtigt werden kann. (shrink)

Definition of the problemThe concept of privacy has been astonishingly absent in the discussion about dementia care. In general, questions of privacy receive a lot of attention in nursing ethics; however, when it comes to dementia care, hardly any systematic ethical debate on the topic can be found. It almost seems as though people with dementia had lost any comprehensible interest in privacy and no longer had any private sphere that needed to be considered or protected. However, this not only (...) contradicts widespread moral intuitions but also ignores the views and needs of those affected.ArgumentsWe first outline the origins and dimensions of the concept of privacy and point out problems and limitations in the context of dementia. Especially the prevalent liberal conceptions’ dependence on the idea of autonomy poses significant challenges to an adequate conceptualization of the moral significance of privacy for people with dementia. Therefore, we subsequently explore alternative ways of conceptualizing the “value of privacy” in the context of dementia care.ConclusionAutonomy-based concepts of privacy may still be valid in the early stages of dementia. However, in the further course of the syndrome, the relevance of other normative aspects comes to the fore, especially respect for remaining personal preferences as well as objective criteria of dignity and well-being. Thus, we outline in a differentiated manner how and to what extent privacy can be of normative importance beyond the purview of autonomy and should consequently be taken into consideration in dementia care. (shrink)

The clinical relationship has been underexplored in dementia care. This is in part due to the way that the clinical relationship has been articulated and understood in bioethics. Robert Veatch’s social contract model is representative of a standard view of the clinical relationship in bioethics. But dementia presents formidable challenges to the standard clinical relationship, including ambiguity about when the clinical relationship begins, how it weathers changes in narrative identity of patients with dementia, and how the intimate involvement of family (...) fits alongside a paradigmatically dyadic relationship. Drawing on work in recent feminist theory, a critique is offered of the standard clinical relationship in bioethics as underwritten by an individualistic conception of autonomy. An alternative view of the clinical relationship in dementia, one that embraces a relational account of autonomy, is put forward. (shrink)

In the paper, after clarifying terms such as ‘identity’, ‘self’ and ‘personhood’, I propose an empirical account of identity based on the notion of “whole phenotype”. This move allows one to claim the persistence of the individuals before and after their being affected by dementia. Furthermore, I show how this account permits us to address significant questions related to demented individuals’ loss of the capacity of moral decisions.

It has often been claimed that orthodox thinking about personal identity undermines the moral authority of advance directives in dementia by implying that the signer of the directive is numerically different from the severely demented patient. This is the ‘identity problem'. I introduce the problem, outline some well‐known solutions, and explain why they might be deemed unattractive. I then propose an alternative solution. It promises to be compatible with orthodox thinking about personal identity. I discuss three ways in which it (...) might be challenged and find that none is convincing. Personal identity is no bar to the moral authority of advance directives. (shrink)

In this paper, I answer the following question: suppose that two individuals, C and D, have been in a long-term committed relationship, and D now has dementia, while C is competent; if D agrees to have sex with C, is it permissible for C to have sex with D? Ultimately, I defend the view that, under certain conditions, D can give valid consent to sex with C, rendering sex between them permissible. Specifically, I argue there is compelling reason to endorse (...) the following thesis: -/- Prior Consent Thesis: D, when competent, can give valid prior consent to sex with her competent partner (C) that will take place after she has dementia, assuming that D is the same person as she was when she gave prior consent, meaning that, if D, when competent, gave prior consent to sex with C, then C may permissibly have sex with D. In section I, I explain both the background and the existing literature on this issue. In section II, I outline relevant stipulations about the kinds of cases I will be examining. In section III, I defend the Prior Consent Thesis. And, in section IV, I address objections to the Prior Consent Thesis. (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)

The rapidly expanding aging population presents an urgent global challenge cutting through just about every dimension of worldly life, including the social, political, cultural, and economic. Developing innovations in health and assistive technology (AT) are poised to support effective and sustainable health care in the face of this challenge, yet there is scant (but growing) discussion of the ethical issues surrounding AT for older persons with dementia. Demands for ethical frameworks that can respond to frontline dilemmas regarding AT development and (...) provision, and how the needs of aging persons themselves are defined throughout this development process, are increasing. This article suggests that fulfilling the promises of AT to provide effective and ethically informed solutions may demand shifting away from standard bioethical analyses that centralize the principle of respect for autonomy. An autonomy-centric paradigm is dubiously equipped to theorize the foundational ethical issues in dementia care and to effectively guide AT development and implementation. An agency-centered approach to dementia care, which could engage more adaptively with the perspectives and choices of older persons themselves while offering strong support to AT research and stakeholders, may offer an attractive alternative. (shrink)

Ronald Dworkin introduced the example of Margo, who was so severely demented that she could not recognise any family or friends, and could not remember anything of her life. At the same time, however, she seemed full of childish delight. Dworkin also imagines that, before her dementia, Margo signed an advance refusal of life-saving treatment. Now severely demented, she develops pneumonia, easy to treat, but lethal if untreated. Dworkin argues that the advance refusal ought to be heeded and Margo be (...) allowed to die of that pneumonia, on the basis that the prior refusal expresses her true wishes. In this paper I want to challenge Dworkin’s understanding of identity and his conclusion about advance refusals, and I develop my argument in two directions. First, I argue that the demented Margo is not some ‘lesser’ version of the ‘true’ Margo, but instead that the present Margo’s wishes should take precedence over those of the past Margo, on the grounds that all of us are entitled to change our minds. Second, I argue for a stronger role for friends and family members in sustaining the demented Margo’s identity through her years of decline. Based on this, I argue for a presumption against the advance refusal, but I allow that in extreme cases, a friend might have the authority to demand that it be heeded. (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)

Justice requires that public policy improve the lives of disadvantaged members of society. Dementia is a source of disadvantage, and a growing global public health challenge. This article examines the theoretical and ethical connections between theories of justice and public dementia policy. Disability in general, and dementia in particular, poses important challenges for theories of justice, especially social contract theories. First, the article argues that non-contractarian accounts of justice such as the Capabilities and Disadvantage approaches are better equipped than their (...) contractarian counterparts to analyse issues of justice and dementia. Secondly, using a capabilities framework, I analyse original empirical data from qualitative interviews and discussion groups with health and social care professionals. The article concludes that social connection is a ‘fertile functioning’—a multiplier of advantage that enables people to live well with dementia together—and should therefore be a priority for public dementia policy. (shrink)

Advance directives are critically important for capable individuals who wish to avoid the burdens of life-prolonging interventions in the advanced stages of dementia. However, this paper will argue that advance directives should have less application to questions about feeding patients during the clinical course of dementia than often has been presumed. The argument will be framed within the debate between Ronald Dworkin and Rebecca Dresser regarding the moral authority of precedent autonomy to determine an individual’s future end-of-life care plan. We (...) will use a brief analysis of the positions taken in two important papers that come out of the Dworkin/Dresser debate and a hypothetical patient, John, who will be followed from diagnosis of dementia to death, to show how advance directives should apply to key points in the progression of his disease, particularly in relation to food and nutrition. (shrink)

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six (...) interviews were undertaken with fifty-seven participants across three states in Australia. Interpretative Phenomenological Analysis was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. (shrink)

Authorising euthanasia and assisted suicide with advance euthanasia directives is permitted, yet debated, in the Netherlands. We focus on a recent controversial case in which a Dutch woman with Alzheimer’s disease was euthanised based on her AED. A Dutch euthanasia review committee found that the physician performing the euthanasia failed to follow due care requirements for euthanasia and assisted suicide. This case is notable because it is the first case to trigger a criminal investigation since the 2002 Dutch euthanasia law (...) was enacted. Thus far, only brief descriptions of the case have been reported in English language journals and media. We provide a detailed description of the case, review the main challenges of preparing and applying AEDs for persons with dementia and briefly assess the adequacy of the current oversight system governing AEDs. (shrink)

Americans who are afraid of living for many years with Alzheimer's might seek a way to end their lives early, when their dementia has just entered the moderate phase. There is no legal process for doing so. In this paper I argue that advance directives, in particular, are not a legal solution for those who prefer to die rather than suffer years of dementia. The problem is that an advance directive only works to hasten death when there is a life-threatening (...) illness for which one can refuse treatment; more often than not, Alzheimer's kills the self long before it kills the body. (shrink)

Viele Menschen halten Patientenverfügungen für ein geeignetes Mittel, um selbstbestimmt zu entscheiden, wie mit ihnen im Fall schwerer Demenz umgegangen werden soll. Die meisten Bioethiker stimmen ihnen zu: Demenzverfügungen seien Ausdruck der „verlängerten Autonomie“ der Patientin. Doch ob sie recht haben, ist unklar. Dem viel beachteten Identitätseinwand zufolge sind die Ausstellerin der Verfügung und ihre schwer demente Nachfolgerin numerisch verschieden: Sie sind zwei und nicht eins. Wenn das stimmt, kann die Ausstellerin nicht verfügen, wie mit ihr im Falle schwerer Demenz (...) umgegangen werden soll. Die Demenzverfügung ist ungültig. In meinem Aufsatz möchte ich eine neue Replik auf diesen Einwand vorstellen. Ihr Ansatzpunkt ist der menschliche Organismus, den wir sehen, wenn wir in den Spiegel blicken. Er kann schwer dement werden, und auch er hat die Patientenverfügung unterschrieben. Warum sollte sie dann ungültig sein? Auf den ersten Blick hat diese Replik eine Reihe von Vorzügen. Insbesondere akzeptiert sie die populären Annahmen, auf denen der Identitätseinwand basiert. Bei näherem Hinsehen zeigen sich jedoch Probleme, die so gravierend sind, dass wir von ihr Abstand nehmen sollten. (shrink)

The proposal of the new criteria for the diagnosis of Alzheimer’s disease based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment or predementia/prodromal– stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis. Advance directives are largely seen as an effective tool for planning (...) medical care in the event the subject becomes incompetent. Nevertheless, their value has been questioned with regard to people with dementia by scholars who refer to the arguments of personal identity and of patient’s changing interests before and after the onset of dementia. In this paper, I discuss the value of advance directives in Alzheimer’s disease and other kind of dementia. Despite critics, I argue that advance directives are especially advisable in dementia and provide reasons in favor of their promotion at an early stage of the disease as a valuable tool to respect patients’ values and preferences on medical treatment, including participation in research and end of life decisions. I mainly support advance directives that include both decisions regarding health care and the appointment of an attorney in fact. I conclude that patients with AD at a prodromal or early stage should be offered the opportunity to execute an advance directive, and that not to honor a demented individual’s directive would be an unacceptable form of discrimination towards those patients. (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)

The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial of values of social (...) justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships. (shrink)

If you developed Alzheimer disease, would you want to go all the way to the end of what might be a decade‐long course? Some would; some wouldn't. Options open to those who choose to die sooner are often inadequate. Do‐not‐resuscitate orders and advance directives depend on others' cooperation. Preemptive suicide may mean giving up years of life one would count as good. Do‐it‐yourself methods can fail. What we now ask of family and clinicians caring for persons with dementia, and of (...) patients given no better option than to go on with lives they may not want, is unacceptable. To explore how one might better control one's own dying and avoid burdening others with overwhelming care and morally painful choices, we propose a thought experiment: an advance directive implant that would enable persons with early dementia, while competent, to arrange their own deaths without the subsequent intervention of anyone else. (shrink)

In a recent Dutch euthanasia case, a woman underwent euthanasia on the basis of an advance directive, having first been sedated without her knowledge and then restrained by members of her family while the euthanasia was administered. This article considers some implications of the criminal court’s acquittal of the doctor who performed the euthanasia. Supporters of advance euthanasia directives have welcomed the judgement as providing a clarification of the law, especially with regard to the admissibility of contextual evidence in interpreting (...) advance euthanasia directives, but suggested that the law regarding advance euthanasia directives should be further relaxed to remove the requirement of current suffering and that an unfortunate consequence of the prosecution is that it is likely to deter doctors from performing euthanasia even in more straightforward cases. This article argues that the court’s endorsement of the use of contextual evidence is problematic, that the case for prioritising prior decisions over current interests has not been advanced by the discussion surrounding this case and that worries about the alleged deterrent effect are not well founded. (shrink)

We agree with Emily Walsh (2020) that the current preferences of patients with dementia should sometimes supersede those patients’ advance directives. We also agree that consensus clinical ethics guidance does a poor job of explaining the moral value of such patients’ preferences. Furthermore, Walsh correctly notes that clinicians are often averse to treating patients with dementia over their objections, and that this aversion reflects clinical wisdom that can inform revisions to clinical ethics guidance. But Walsh’s account of the moral value (...) of the preferences of patients with dementia suffers from three major problems: (1) it does not engage the actual practices of clinical ethics; (2) it provides an inadequate account of why these patients’ preferences matter; and (3) it offers a poor explanation of clinicians’ intuitions in these cases. Her arguments engage a philosophical debate that is largely irrelevant to clinical practice and she therefore leaves pressing real-world clinical ethics questions unaddressed. After underscoring some of Walsh’s main points, we will discuss each of these shortcomings. (shrink)

This paper revisits Ronald Dworkin’s influential position that a person’s advance directive for future health care and medical treatment retains its moral authority beyond the onset of dementia, even when respecting this authority involves foreshortening the life of someone who is happy and content and who no longer remembers or identifies with instructions included within the advance directive. The analysis distils a eudaimonist perspective from Dworkin’s argument and traces variations of this perspective in further arguments for the moral authority of (...) advance directives by other authors. It then critiques a feature of the eudaimonist perspectives within these arguments—namely, the position that dementia has a retroactive negative impact on what a person has previously valued—and challenges the commonly held assumption underlying them that a person’s life and well-being have relatively low value beyond the onset of dementia. Although advance directives have moral authority as a means of guiding one’s future health care, accounts that dismiss the value of the lives and well-being of people living with dementia should be questioned to the extent that such accounts are used to support the moral authority of advance directives stipulating measures to foreshorten individuals’ lives. (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)

BackgroundDementia care is essential to promote the well-being of patients but remains a difficult task prone to ethical issues. These issues include questions like whether manipulating a person with dementia is ethically permissible if it promotes her best interest or how to engage with a person who is unwilling to recognize that she has dementia. To help people living with dementia and their carers manage ethical issues in dementia care, we developed the CARE intervention. This is an intervention focused on (...) promoting the ethical self-efficacy of people living with dementia and carers, i.e., their confidence that they can manage ethical issues when they occur. The purpose of this paper is to explain and discuss how we have developed the CARE intervention to promote the ethical self-efficacy of people living with dementia, their family, and professional carers through a specific and, we believe, new use of literary texts.MethodsThe CARE intervention has been developed in two phases: First, we conducted a needs assessment of the occurrence of ethical issues in dementia care and the need for an intervention to support people living with dementia and their carers in managing such issues. Second, in a design phase, we developed the CARE intervention to meet identified needs.ResultsTo address identified ethical issues in dementia care we designed the CARE intervention as a workshop format where people living with dementia and carers can meet, discuss literary texts, and deliberate on how to solve such issues. The workshop is structured by the following elements: An agenda of ethical issues, a collection of literary cases exemplifying ethical issues, a moderator with an understanding of dementia care, and an overview of the ethical principles relevant to the discussion of ethical issues. >This workshop concept is operationalized in three applications tailored to meet the specific ethical issues of each of the study´s three target groups: people living with dementia and family carers, professional and family carers, and professional carers.ConclusionWe conclude the paper by stating that it is possible to develop an intervention that promotes the ethical self-efficacy of people living with dementia and family and professional carers. (shrink)

Advance directives for withholding life-saving treatment are controversial for dementia patients whose previously expressed wishes conflict with their currently expressed desires. To illustrate this ethical dilemma, McMahan conceives a hypothetical case in which an intellectually proud creative woman signs an advance directive stipulating her refusal to receive life-saving treatment if she contracts a fatal condition with dementia. However, when she develops dementia and forgets this advance directive, she contracts pneumonia and now expresses a desire to live. In response to such (...) dilemmas, scholars like Norman Cantor have defended the moral authority of advance directives by giving credence to one’s prior competent wishes over one’s current incompetent preferences. I argue that their arguments, which are rooted in the principle of respect for autonomy, operate under ableist assumptions about incompetent persons and exclude other important features of respect. I propose an ethics of care model as an alternative moral approach that reconceptualises respect as a matter of caring about people’s contemporaneous interests, even if they are not competently conceived. It fosters the virtues of care by encouraging healthcare providers to recognise dementia patients as legitimate narrative agents capable of authoring their own evolving life story. I argue that the ethics of care model not only provides an ethical defence of the creative woman’s current incompetent desire to live despite her advance directive, but also vindicates our moral intuitions about what it means to demonstrate respect to dementia patients. (shrink)

Recent work calls for excluding clinical ethics consultants’ religious ethical commitments from formulating recommendations about particular cases and communicating those recommendations. I demonstrate that three arguments that call for excluding religious ethical commitments from this work logically imply that consultants may not use their secular ethical commitments in their work. The call to sever clinical ethics consultation from the ethical commitments of clinical ethics consultants has implications for the scope of work consultants may do and for the competencies required for (...) such work. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 32-41, January/February 2022.

According to a standard account of patient decision-making capacity, patients can provide ethically valid consent or refusal only if they are able to understand and appreciate their medical c...

There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One could lose (...) years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (shrink)