Implicit intergroup biases have been shown to impact social behavior in many unsettling ways, from disparities in decisions to “shoot” black and white men in a computer simulation to unequal gender-based evaluations of résumés and CVs. It is a difficult question whether, and in what way, agents are responsible for behaviors affected by implicit biases. I argue that in paradigmatic cases agents are responsible for these behaviors in the sense that the behavior is “attributable” to them. That is, behaviors affected (...) by implicit biases reflect upon who one is as a moral agent. (shrink)

According to Dewey, we are responsible for our conduct because it is “ourselves objectified in action”. This idea lies at the heart of an increasingly influential deep self approach to moral responsibility. Existing formulations of deep self views have two major problems: They are often underspecified, and they tend to understand the nature of the deep self in excessively rationalistic terms. Here I propose a new deep self theory of moral responsibility called the Self-Expression account that addresses these issues. The (...) account is composed of two parts. The first part answers the question, What is a deep self? Theorists have tended to favor cognitive views that understand the deep self in terms of rationally formed evaluative judgment. I propose instead a conative view that says one’s deep self consists of a distinctive kind of pro-attitude, cares, and I provide an account of cares in terms of their distinctive psychological functional role. The second part answers the question, When does an action express one’s deep self? I criticize the agentially demanding conditions set out in existing views and propose a more minimalist alternative. I show that the Self-Expression account handles issues that bedeviled traditional deep self views, including how to explain moral responsibility for spontaneous, out of character, and weak-willed actions. (shrink)

Loss of self is widely regarded to be a consequence of dementia, and this perceived loss presents a variety of problems - not least because a clear understanding of the concept of self is elusive. This paper suggests a way to cut through problems that arise because we rely on conceptions of self in our understanding of the effects of dementia. It is proposed that we can avoid reliance on the concept of self through an approach based in in bio-phenomenology. (...) Such an approach would help us better understand the inner life of those with dementia and assist us to recognize that even in late stage dementia they are semiotic subjects with unique value. (shrink)

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)

“Neurodiversity” is associated with the struggle for the civil rights of all those diagnosed with neurological or neurodevelopmental disorders. Two basic approaches in the struggle for what might be described as “neuro-equality” are taken up in the literature: There is a challenge to current nosology that pathologizes all of the phenotypes associated with neurological or neurodevelopmental disorders ); there is a challenge to those extant social institutions that either expressly or inadvertently model a social hierarchy where the interests or needs (...) of individuals are ranked relative to what is regarded as properly functioning cognitive capacities. In this paper, we explore some of the reasons justifying which make it an important tool for achieving greater neuro-equality, while still recognizing its limitations for achieving this goal. Particularly, we explore how an appeal to functionality and neurological diversity can support a re-seeing of at least certain forms of ASD. (shrink)

The paper investigates whether it is plausible to hold the late stage demented criminally responsible for past actions. The concern is based on the fact that policy makers in the United States and in Britain are starting to wonder what to do with prison inmates in the later stages of dementia who do not remember their crimes anymore. The problem has to be expected to become more urgent as the population ages and the number of dementia patients increases. This paper (...) argues that the late-stage demented should not be punished for past crimes. Applicable theories of punishment, especially theories with an appropriate expressivist, or communicative element, fail to justify the imprisonment of the late-stage demented. Further imprisonment would require a capacity for comprehension on the part of the punished, and, under certain narrowly specified conditions, even a capacity to be at least in principle capable of recalling the crime again. (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)

What justifies our holding a person morally responsible for some past action? Why am I justified in having a special prudential concern for some future persons and not others? Why do many of us think that maximizing the good within a single life is perfectly acceptable, but maximizing the good across lives is wrong? In these and other normative questions, it looks like any answer we come up with will have to make an essential reference to personal identity. So, for (...) instance, it seems we are justified in holding X responsible for some past action only if X is identical to the person who performed that action. Further, it seems I am justified in my special concern for some future person only if he will be me. Finally, many of us think that while maximization within a life affects only one person, a metaphysical unity, maximization across lives affects many different, metaphysically distinct, persons, and so the latter is wrong insofar as it ignores this fundamental separateness of persons. (shrink)

In this paper I explore in a preliminary way the interconnections among narrative explanation, narrative value, free will, an immortality. I build on the fascinating an suggestive work of David Velleman. I offer the hypothesis that our acting freely is what gives our lives a distinctive kind of value - narrative value. Free Will, then, is connected to the capacity to lead a meaningful life in a quite specific way: it is the ingredient which, when aded to others, enows us (...) with a meaning over an above the cumulative value erived from ading together levels of momentary welfare. In acting freely, we are writing a sentence in the story of our lives, and the value of acting freely is thus a species of the value of artistic creativity or self-expression (understood appropriately). Finally, I contend that the fact that our lives are stories need not entail that they have endings, or that immortality would necessarily be unimaginable or essentially different from ordinary, finite human life. Yes, a certain sort of narrative understanding of our lives as a whole would be impossible in the context of immortality; but much of what we care about, and value, in our stories might remain. (shrink)

To desire is to be in a particular state of mind. It is a state of mind familiar to everyone who has ever wanted to drink water or desired to know what has happened to an old friend, but its familiarity does not make it easy to give a theory of desire. Controversy immediately breaks out when asking whether wanting water and desiring knowledge are, at bottom, the same state of mind as others that seem somewhat similar: wishing never to (...) have been born, preferring mangoes to peaches, craving gin, having world conquest as one's goal, having a purpose in sneaking out to the shed, or being inclined to provoke just for the sake of provocation. These varied states of mind have all been grouped together under the heading of ‘pro attitudes’, but whether the pro attitudes are fundamentally one mental state or many is disputed. (shrink)

In many Western jurisdictions, the law presumes that adult persons, and sometimes children that meet certain criteria, are capable of making their own health care decisions; for example, consenting to a particular medical treatment, or consenting to participate in a research trial. But what exactly does it mean to say that a subject has or lacks the requisite capacity to decide? This last question has to do with what is commonly called “decisional capacity,” a central concept in health care law (...) and ethics, and increasingly an independent topic of philosophical inquiry. (shrink)

To be autonomous is to be a law to oneself; autonomous agents are self-governing agents. Most of us want to be autonomous because we want to be accountable for what we do, and because it seems that if we are not the ones calling the shots, then we cannot be accountable. More importantly, perhaps, the value of autonomy is tied to the value of self-integration. We don't want to be alien to, or at war with, ourselves; and it seems that (...) when our intentions are not under our own control, we suffer from self-alienation. What conditions must be satisfied in order to ensure that we govern ourselves when we act? Philosophers have offered a wide range of competing answers to this question. (shrink)

This article reviews the Dutch societal debate on euthanasia/assisted suicide in dementia cases, specifically Alzheimer's disease. It discusses the ethical and practical dilemmas created by euthanasia requests in advance directives and the related inconsistencies in the Dutch legal regulations regarding euthanasia/assisted suicide. After an initial focus on euthanasia in advanced dementia, the actual debate concentrates on making euthanasia/assisted suicide possible in the very early stages of dementia. A review of the few known cases of assisted suicide of people with so-called (...) early dementia raises the question why requests for euthanasia/assisted suicide from patients in the early stage of Alzheimer's disease are virtually non-existent. In response to this question two explanations are offered. It is concluded that, in addition to a moral discussion on the limits of anticipatory choices, there is an urgent need to develop research into the patient's perspective with regard to medical treatment and care-giving in dementia, including end-of-life care. (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)

We argue that contemporary conceptualizations of “persons” have failed to achieve the moral goals of “person-centred care” (PCC, a model of dementia care developed by Tom Kitwood) and that they are detrimental to those receiving care, their families, and practitioners of care. We draw a distinction between personhood and selfhood, pointing out that continuity or maintenance of the latter is what is really at stake in dementia care. We then demonstrate how our conceptualization, which is one that privileges the lived (...) experiences of people with dementia, and understands selfhood as formed relationally in connection with carers and the care environment, best captures Kitwood’s original idea. This conceptualization is also flexible enough to be applicable to the practice of caring for people at different stages of their dementia. Application of this conceptualization into PCC will best promote the well-being of people with dementia, while also encouraging respect and dignity in the care environment. (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)

Advance directives are intended to extend patient autonomy by enabling patients to prospectively direct the care of their future incapacitated selves. There has been much discussion about issues such as whether the future incompetent self is identical to the agent who issues the advance directives or whether advance directives can legitimately secure patient autonomy. However, there is another important question to ask: to what extent and in what conditions is it ethically appropriate for one to limit the liberty or agency (...) of one’s future incompetent self by issuing an advance directive? -/- In this paper, I use a virtue-ethical approach to explore this question, focusing on the case of an advance directive for the future self with moderate dementia. First, I examine virtuous attitudes with regard to autonomy and argue that one can manifest vices or ethically undesirable character traits in trying to intervene in the future self’s life. In particular, I argue that this case can manifest vices such as disdainfulness, intellectual arrogance, and self-dictatorship, which is the vice of trying to control one’s life to an excessive degree, and that a self-dictator fails to give due moral consideration to the future self’s liberty or agency. I then introduce the Daoist idea of wu-wei, which recommends embracement of what happens in one’s life, as one of the possible remedies for the overemphasis on the value of autonomy and control. (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)

Machine intelligence already helps medical staff with a number of tasks. Ethical decision-making, however, has not been handed over to computers. In this proof-of-concept study, we show how an algorithm based on Beauchamp and Childress’ prima-facie principles could be employed to advise on a range of moral dilemma situations that occur in medical institutions. We explain why we chose fuzzy cognitive maps to set up the advisory system and how we utilized machine learning to train it. We report on the (...) difficult task of operationalizing the principles of beneficence, non-maleficence and patient autonomy, and describe how we selected suitable input parameters that we extracted from a training dataset of clinical cases. The first performance results are promising, but an algorithmic approach to ethics also comes with several weaknesses and limitations. Should one really entrust the sensitive domain of clinical ethics to machine intelligence? (shrink)

The discipline of knowledge translation (KT) emerged as a way of systematically understanding and addressing the challenges of applying health and medical research in practice. In light of ongoing and emerging critique of KT from the medical humanities and social sciences disciplines, KT researchers have become increasingly aware of the complexity of the translational process, particularly the significance of culture, tradition and values in how scientific evidence is understood and received, and thus increasingly receptive to pluralistic notions of knowledge. Hence, (...) there is now an emerging view of KT as a highly complex, dynamic, and integrated sociological phenomenon, which neither assumes nor creates knowledge hierarchies and neither prescribes nor privileges scientific evidence. Such a view, however, does not guarantee that scientific evidence will be applied in practice and thus poses a significant dilemma for KT regarding its status as a scientific and practice-oriented discipline, particularly within the current sociopolitical climate. Therefore, in response to the ongoing and emerging critique of KT, we argue that KT must provide scope for relevant scientific evidence to occupy an appropriate position of epistemic primacy in public discourse. Such a view is not intended to uphold the privileged status of science nor affirm the “scientific logos” per se. It is proffered as a counterbalance to powerful social, cultural, political and market forces that are able to challenge scientific evidence and promote disinformation to the detriment of democratic outcomes and the public good. (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.

Mackenzie Graham has made an important contribution to the literature on decisionmaking for patients with disorders of consciousness. He argues, and I agree, that decisions for unresponsive patients who are known to retain some degree of covert awareness ought to focus on current interests, since such patients likely retain the kinds of mental capacities that in ordinary life command our current respect and attention. If he is right, then it is not appropriate to make decisions for such patients by appealing (...) to the values they had in the past, either the values expressed in an advance directive or the values recalled by a surrogate. There are two things I wish to add to the discussion. My first point is somewhat critical, for although I agree with his general conclusion about how, ideally, such decisions should be approached, I remain skeptical about whether his conclusion offers decisionmakers real practical help. The problem with these cases is that the evidence we have about the nature of the patient’s current interests is minimal or nonexistent. However—and this is important—Graham’s conclusion will be extremely relevant if in the future, our ability to communicate with such patients improves, as I hope it will. This leads to my second point. Graham’s conclusion illustrates a more general problem with our standard framework for decisionmaking for previously competent patients, a problem that has not been adequately recognized. So, in what follows, I explain the problem I see and offer some brief thoughts about solutions. (shrink)

Volume 20, Issue 8, August 2020, Page 93-95.

Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient’s preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to show that (...) the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients. (shrink)

advanced directivesend-of-life decisionsharming the deadposthumous reproductiontransplant ethics.

Reasons internalists claim that facts about normative reasons for action are facts about which actions would promote an agent’s goals and values. Reasons internalism is popular, even though paradigmatic versions have moral consequences many find unwelcome. This article reconstructs an influential but understudied argument for reasons internalism, the “if I were you” argument, which is due to Bernard Williams and Kate Manne. I raise an objection to the argument and argue that replying to it requires reasons internalists to accept controversial (...) metaethical or epistemological commitments with which their theory has not traditionally been associated. (shrink)

The Substituted Judgment Standard for surrogate decision-making dictates that a surrogate, when making medical decisions on behalf of an incapacitated patient, ought to make the decision that the patient would have made if the patient had decisional capacity. Despite its intuitive appeal, however, SJS has been the target of a variety of criticisms. Most objections to SJS appeal to epistemic difficulties involved in determining what a patient would have decided in a given case. In this article, I offer an alternative (...) standard for surrogate decision-making that avoids these difficulties. I then offer an account of its theoretical underpinnings which shows that it preserves the central moral justification for SJS, namely, respect for patient autonomy. (shrink)

I consider the current best interests of patients who were once thought to be either completely unaware (to be in PVS) or only minimally aware (MCS), but who, because of advanced fMRI studies, we now suspect have much more “going on” inside their minds, despite no ability to communicate with the world. My goal in this chapter is twofold: (1) to set out and defend a framework that I think should always guide thinking about the best interests of highly cognitively (...) compromised patients, and then (2) to defend a particular conclusion that applies to this specific patient population. The framework requires us to ask two questions: Is the individual suffering? Is the individual gaining any benefit from life? There must be benefit of some sort for life to be worth preserving, and the benefit must outweigh any suffering (if there is suffering present). I then argue it would be best overall to allow these patients to die. Either these patients are not really very aware at all, in which case they are most likely not suffering, but not benefiting from life either, or they are mentally intact enough to make benefit a theoretical possibility, but in fact they are not benefiting because they cannot communicate with anyone. Such patients would most likely suffer. As there is no way currently to address their suffering, we should allow them to die. No matter the truth about their cognitive lives, death would either be a neutral event, or a blessing. (shrink)

I develop and defend the view that subjects are necessarily psychologically able to revise their beliefs in response to relevant counter-evidence. Specifically, subjects can revise their beliefs in response to relevant counter-evidence, given their current psychological mechanisms and skills. If a subject lacks this ability, then the mental state in question is not a belief, though it may be some other kind of cognitive attitude, such as a supposition, an entertained thought, or a pretense. The result is a moderately revisionary (...) view of belief: while most mental states we thought were beliefs are beliefs, some mental states which we thought were beliefs are not beliefs. The argument for this view draws on two key claims: First, subjects are rationally obligated to revise their beliefs in response to relevant counter-evidence. Second, if some subject is rationally obligated to revise one of her mental states, then that subject can revise that mental state, given her current psychological mechanisms and skills. Along the way to defending these claims, I argue that rational obligations can govern activities which reflect on one’s rational character, whether or not those activities are under one’s voluntary control. I also show how the relevant version of epistemic ‘ought’ implies ‘can’ survives an objection which plagues other variants of the principle. (shrink)

In this paper, we focus on whether and to what extent we judge that people are responsible for the consequences of their forgetfulness. We ran a series of behavioral studies to measure judgments of responsibility for the consequences of forgetfulness. Our results show that we are disposed to hold others responsible for some of their forgetfulness. The level of stress that the forgetful agent is under modulates judgments of responsibility, though the level of care that the agent exhibits toward performing (...) the forgotten action does not. We argue that this result has important implications for a long-running debate about the nature of responsible agency. (shrink)

Although informed consent is important in clinical research, questions persist regarding when it is necessary, what it requires, and how it should be obtained. The standard view in research ethics is that the function of informed consent is to respect individual autonomy. However, consent processes are multidimensional and serve other ethical functions as well. These functions deserve particular attention when barriers to consent exist. We argue that consent serves seven ethically important and conceptually distinct functions. The first four functions pertain (...) principally to individual participants: (1) providing transparency; (2) allowing control and authorization; (3) promoting concordance with participants' values; and (4) protecting and promoting welfare interests. Three other functions are systemic or policy focused: (5) promoting trust; (6) satisfying regulatory requirements; and (7) promoting integrity in research. Reframing consent around these functions can guide approaches to consent that are context sensitive and that maximize achievable goals. (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)

Competent patients have considerable legal authority to control life‐and‐death care. They may refuse medical life support, including medically delivered food and fluids. Even when they are not in need of any life‐saving care, they may expedite death by refusing food and water by mouth—voluntarily stopping eating and drinking, or VSED. Neither right is limited to terminal illness. In addition, in four U.S. states, competent patients, if terminally ill, may obtain lethal drugs for aid‐in‐dying.For people who have dementia and are no (...) longer competent, however, control over the end of life is much less extensive. They may have written a clear advance directive for refusing life‐saving care in specified circumstances yet subsequently find themselves living for years in severe dementia with no need for life‐saving care that could be refused. Chronic progressive dementia is not itself life threatening until its very final stage. Even in jurisdictions that permit active aid‐in‐dying, individuals with advanced dementia are not eligible; they lack the required current competence, and they are seldom deemed terminally ill. As for the right to VSED, its very name—voluntarily stopping eating and drinking—is seen as excluding noncompetent persons.One option for ensuring that one does not live years in severe dementia is to use advance directives to withhold food and water by mouth. The driving element behind VSED is that forcing people to ingest food is as objectionable an intrusion on bodily integrity, privacy, and liberty as imposing unwanted medical treatment. Thus, if incompetent people do not lose their rights to refuse life‐saving treatment, and if people when competent have just as strong a right to VSED as they do to refuse life‐saving treatment, then people do not lose their right to VSED when incompetent either. They only have to exercise it by AD. (shrink)

This essay examines the goals of care and the exercise of guardianship authority in the long-term care of persons with Alzheimer's disease and other forms of chronic, progressive dementia. It counters philosophical views that deny both agency and personhood to individuals with Alzheimer's on definitional or analytic conceptual grounds. It develops a specific conception of the quality of life and offers a critique of hedonic conceptions of quality of life and models of guardianship that are based on a hedonic legal (...) standard of “best interests.” As an alternative, it proposes a conception of quality of life based on the notions of “semantic agency” and “memorial personhood.”. (shrink)

Philosophers have debated whether the advance directives of Alzheimer’s patients should be enforced, even if patients seem content in their demented state. The debate raises deep questions about the nature of human autonomy and personal identity. But it tends to proceed on the assumption that the advance directive’s terms are clear, whereas in practice they are often vague or ambiguous, requiring the patient’s healthcare proxy to make difficult judgment calls. This practical wrinkle raises its own, distinct but related, philosophical question: (...) what criteria may the proxy bring to bear when making such interpretive judgments on which the patient’s life may depend? After defending a general policy of enforcing advance directives on normative (rather than metaphysical) grounds, I argue that when advance directives are vague, a patient’s proxy may permissibly make her own fresh evaluation of the patient’s life as a whole and, in so doing, consider how the patient’s character as a demented person contributes or fails to contribute to that life. (shrink)

In the article “On Avoiding Deep Dementia,” Norman Cantor defends a position that I suspect many readers share. In my years writing and speaking on advance directives and dementia, I've found that most people support one of two positions. They are convinced either that advance choices should control the treatment dementia patients receive or that the welfare of a person with dementia should sometimes take priority over earlier choices. As Cantor points out, I support the second position.I agree with several (...) of Cantor's arguments. Where Cantor and I part ways is over the degree of control that advance directives should exert over the care of persons with moderate dementia. Although I don't welcome the prospect of living with dementia, I believe that people with the condition should be represented in the debate over treatment standards. It's not surprising that many, perhaps most, people unaffected by dementia think that their preferences should control the care they would receive as dementia patients. But people taking this position are neglecting the concerns and interests they may have as dementia patients. (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)

Although advance directives are widely believed to be a key way to safeguard the autonomy of incompetent medical patients, significant questions exist about their moral authority. The main philosophical concern involves cases in which an incompetent patient no longer possesses the desires on which her advance directive was based. The question is, does that entail that prior expressions of medical choices are no longer morally binding? I believe that the answer is “yes.” I argue that a patient’s autonomy is not (...) respected by honoring the desires she used to have but no longer does. I also consider and reject the view that honoring an advance directive that reflects the patient’s previous values must be in that patient’s best interests. If that is correct, then advance directives in the kind of case at issue are not morally binding. (shrink)

Promising ourselves is familiar, yet some find it philosophically troubling. Though most of us take the promises we make ourselves seriously, it can seem mysterious how a promise made only to oneself could genuinely bind. Moreover, the desire to be bound by a promise to oneself may seem to expose an unflattering lack of trust in oneself. In this paper I aim to vindicate self-promising from these broadly skeptical concerns. Borrowing Nietzsche’s idea of a memory of the will, I suggest (...) that self-promising involves an activity of the will, aimed at the preservation and protection of one’s values. I explain how, understood in this way, these promises can indeed bind, and show that the motivation for making them need not involve mistrust or other alienated attitudes. I then turn to interpersonal promising, arguing that this same activity of the will is required for sincerely promising others: in effect, making a sincere promise to another requires making a promise to oneself. Attention to this under-appreciated aspect of interpersonal promising enriches our understanding of all promises, and helps to correct a narrow and distorted picture of what it means to be bound. (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)

Abortion is permitted in many jurisdictions after the age at which an infant is viable on the basis of intensive neonatal care techniques. Does this cause special concerns for those involved in perinatal care and termination of pregnancy services or is the overlap mainly an abstract issue fretted over by ethicists and academics? In order to explore this question, a group of clinicians involved in this area of care were interviewed and their interviews analysed using qualitative measures. The clinicians concerned (...) were exercised by the ethical issues and had various ways of resolving them which tended to reflect a gradualist, multifaceted and, to some extent, particularist approach to ethical decision-making in relation to the edges of human life. The ways in which those strands of ethical thought are instanced in the interview material are reported and discussed. (shrink)

Many forms of contemporary morality treat the individual as the fundamental unit of moral importance. Perhaps the most striking example of this moral vision of the individual is the contemporary global human rights regime, which treats the individual as, for all intents and purposes, sacrosanct. This essay attempts to explore one feature of this contemporary understanding of the moral status of the individual, namely the moral significance of a subject’s actual affective states, and in particular her cares and commitments. I (...) argue that in virtue of the moral significance of actual individuals, we should take actual cares and values very seriously—even if those cares and values are not expressions of the person’s autonomy—as partially constituting that individual as a concrete subject who is the proper object of our moral attention. In particular, I argue that a person’s actual cares and values have non-derivative moral significance. Simply because someone cares about something, that care is morally significant. In virtue of this non-derivative moral significance of cares, we ought to adopt of a commitment to accommodate others’ cares and a commitment not to frustrate their cares. (shrink)

This paper explores the ways in which health care professionals, family carers, and older persons expressed attitudes and opinions on using Paro, a social robot designed to stimulate patients with dementia. Thereafter, we critically evaluate existing prejudicial views toward Paro users to provide recommendations for its future use. Using an exploratory qualitative interview method, we recruited a total of 67 participants in Switzerland. They included 23 care professionals, 17 family carers, and 27 older persons. Data obtained were analyzed thematically. Study (...) findings present general agreement that Paro is an appealing and beneficial social robot, but it is not a tool that everyone feels comfortable with. Because it is perceived as “child play,” it would be demeaning for competent adults to play with such things. Consequently, Paro is appropriate only for persons with dementia. These findings brought forth ethical concerns about deception, infantilization, and respecting older persons' dignity. The idea of who is an appropriate Paro user led to our discussions on predicting future Paro users. The meaning of using social robotics in nursing homes can be conditioned by a rigid interpretation of adulthood and playful behavior. To protect future selves when one is living with dementia from prejudices, it may be useful for older persons and their loved ones to plan their future care situations to ensure that they are treated in accordance with their delineated decisions. (shrink)

Decision-Making Capacity First published Tue Jan 15, 2008; substantive revision Fri Aug 14, 2020 In many Western jurisdictions the law presumes that adult persons, and sometimes children that meet certain criteria, are capable of making their own medical decisions; for example, consenting to a particular medical treatment, or consenting to participate in a research trial. But what exactly does it mean to say that a subject has or lacks the requisite capacity to decide? This question has to do with what (...) is commonly called “decisional capacity”, a central concept in health care law and ethics, and increasingly an independent topic of philosophical inquiry. -/- Decisional capacity can be defined as the ability of subjects to make their own medical decisions. Somewhat similar questions of capacity arise in other contexts, such as capacity to stand trial in a court of law and the ability to make decisions that relate to personal care and finances. However, the history behind the more general legal notions of capacity to stand trial and capacity to manage one’s life is different and operates somewhat differently in law (Roth, Meisel, & Litz 1977; Zapf & Roesch 2005). For the purposes of this discussion the notion of decisional capacity will be limited to medical contexts only; most notably, those where decisions to consent or to refuse treatment or participation in clinical research are concerned. (shrink)

Standard liberal theories of justice rest on the assumption that only those beings that hold the capacity for moral personality have moral status and therefore are right-holders. As many pointed out, this has the disturbing implication of excluding a wide range of entities from the scope of justice. Call this the under-inclusiveness objection. This paper provides a response to the under-inclusiveness objection and illustrates its implications for liberal theories of justice. In particular, the paper defends two claims: first, it argues (...) that both the CMP and the potential capacity for moral personality are bases of moral status. This pluralist account of the basis of moral status can broaden the scope of justice and provide a solid philosophical justification for the common-sense intuition that almost all human beings have a moral status that is different and superior to that of nonhuman animals. Second, contra what is commonly suggested, it contends that potential and actual moral persons have different and unequal rights, other things being equal. (shrink)

Behavioural variant frontotemporal dementia (bvFTD) is characterized by an absence of obvious cognitive impairment and presence of symptoms such as disinhibition, social inappropriateness, personality changes, hyper-sexuality, and hyper-orality. Affected individuals do not feel concerned enough about their actions to be deterred from violating social norms, and their antisocial behaviours are most likely caused by the neurodegenerative processes in the frontal and anterior temporal lobes. BvFTD patients present a challenge for the traditional notion of autonomy and the medical and criminal justice (...) systems. Antisocial behaviour is often the earliest recognized manifestation of bvFTD. Given that the symptoms are not specific and that atrophy of the frontal lobes is only observable with structural neuroimaging in the later stages of the disease, it is hard to ascertain their autonomy. Recently proposed re-conceptualizations of autonomy (Dworkin’s, Jaworska’s, and Dubljević’s) can, however, be sufficiently redefined to provide explicit rules and offer nuanced guidance in such cases. A combination of notions of autonomy gives the most nuanced guidance with three modifications: 1) including socio-moral judgement in the notion of “normal cognitive competence,” 2) excluding in-principle un-endorsable ideals from the notion of “capacity to value,” and 3) redefining ideal-typical degrees of compulsion (mild, severe, and total). (shrink)