“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 aim of this article is to investigate how life in Norwegian nursing homes may affect experiences of dignity among persons with dementia. The study had a qualitative design and used a phenomenological and hermeneutic approach. Participant observation in two nursing home units was combined with qualitative interviews with five residents living in these units. The study took place between March and December 2010. The residents feel that their freedom is restricted, and they describe feelings of homesickness. They also experience (...) that they are not being seen and heard as individual autonomous persons. This lack of freedom, experiences of homesickness and feelings of not being confirmed and respected as individual autonomous persons may be a threat to their personal dignity. In order to protect and enforce the dignity of persons with dementia living in nursing home, we should confirm them as whole and as individual persons, and we should try to make the nursing homes less institutional and more home like. (shrink)

Abstract The infantilization of older adults seems morally deplorable whereas very young children are appropriate recipients of such treatment. Children, we argue, are not mentally capable of acting autonomously and reasoning clearly. However, we have difficulty reconciling this justification with the fact that many of the elders whom we respect are mentally deficient in those very same ways. In this paper, I try to make sense of this asymmetry between our justifications for infantilizing the young and our conviction that our (...) elders ought to be respected. I argue that our intuitions against adult infantilization are non-consequentialist (i.e., deontic). I consider several candidates for the deontic factor that might explain the asymmetry of our judgments and practices. I argue that a very specific kind of dignity (one that is socially constructed and reified) grounds our disparate judgments and treatments of very young and very old persons with similar needs. (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)

As case management is under development in France for elderly people, this study sets out to identify and analyse key situations responsible for ethical dilemmas for French case managers. We based our study on the analyses of individual interviews made with case managers and focus-group discussions, bringing together all case managers working in local organisations running for at least a year. We identified three situations giving rise to ethical dilemmas: in the order of importance, the refusals of care, the practicalities (...) of collecting and sharing personal data and the allocation of resources. These three situations can lead to conflict between the principle of beneficence and those of respect for autonomy, non-maleficence and justice. We describe here how French case managers practically deal with these situations. (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)

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)

It may seem paradoxical to speak of the ‘goodlife’ for demented elderly. Many people consider dementia to be a life-wrecking disease and nursing homes to be terrible places. Still, it is relevant to ask how we can make life as good as possible for demented nursing home residents. This paper explores what three standard philosophical accounts of well-being — subjective preference theory, objectivist theories, and hedonism — have to say about the good life for demented people. It is concluded that (...) the relevant differences between the various philosophical theories manifest themselves not so much in their general account of the substantial content of ‘the good life’ but in a number of specific controversies. These concern the nature of well-being, the necessity of endorsement by the patient, the value of experience and the need for experiences to be rooted in reality. Moreover, it is argued that further research should pay detailed attention to the process of dementia and to the effects of this process on patients' identities, self-conceptions, capacities, preferences, values and the like, and that a narrative approach which incorporates the factor time may offer a more comprehensive account of the good life for demented elderly. (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)

(draft) In this chapter, I examine the most significant ethical questions surrounding memory, both at the collective and individual levels, as discussed in the literature. I begin by exploring the values associated with memory, including truth, accuracy, integrity, and broader social and political dimensions. I then address the concept of a duty to remember, particularly in the context of genocide and other human atrocities, and the complex questions this concept raises. Following this, I analyze the ethical challenges posed by forgetting, (...) focusing on its collective implications for forgiveness and its individual dimensions, such as the responsibility for forgetting and the right to be forgotten. After briefly discussing memory virtues—a topic that remains underexplored in the literature—I explore the ethical considerations surrounding the wishes of individuals with severe memory loss, such as those with dementia. Finally, I summarize ethical debates related to current and hypothetical cases of memory modification, erasure, and enhancement, highlighting their potential impacts on personal identity, agency, authenticity, moral responsibility, testimony, and their overall desirability. (shrink)

When making decisions on behalf of someone, is asking what they would have wanted a good way to respect their autonomy? Against prevalent assumptions, I argue that in decisions about the care and treatment of those with advanced dementia, the notion of ‘what one would have wanted’ is conceptually, epistemically, and practically problematic. The problem stems from the disparity between the first-person subjectivity of the past person and that of the present person. The transformative nature of dementia renders the very (...) meaning of ‘what the patient would have wanted’ problematic. When applied to those with advanced dementia, the subjunctive notion is either (i) incoherent, (ii) fundamentally indeterminate, or (iii) normatively irrelevant. (shrink)

Background Advance healthcare decision-making presumes that a prior treatment preference expressed with sufficient mental capacity (“T1 preference”) should trump a contrary preference expressed after significant cognitive decline (“T2 preference”). This assumption is much debated in normative bioethics, but little is known about lay judgments in this domain. This study investigated participants’ judgments about which preference should be followed, and whether these judgments differed depending on a first-person (deciding for one’s future self) versus third-person (deciding for a friend or stranger) perspective. (...) -/- Methods A vignette-based survey was conducted (N = 1445 US Americans; gender-balanced sample), in a 3 (relationship: self, best friend, stranger) × 2 (T1 preference: treat, do not treat) × 2 (T2 contrary preference: ambiguous, unambiguous) design. -/- Results Participants were more likely to defer to the incapacitated T2 preference of a third-party, while being more likely to insist on following their own T1 capacitated preference. Further, participants were more likely to conclude that others with substantial cognitive decline were still their “true selves,” which correlated with increased deference to their T2 preferences. -/- Conclusions These findings add to the growing evidence that lay intuitions concerning the ethical entitlement to have decisions respected are not only a function of cognition, as would be expected under many traditional bioethical accounts, but also depend on the relationship of the decision to the decision-maker’s true self. (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 a Ulysses contract, A gets B, at t1, to agree (i) to act at t2 in such a way that A is made to abide by her own earlier intentions and (ii) to ignore A’s later attempt to rescind the authorization. But why does A’s will at t2 lack the authority it had at t1? This article makes the case that a person has authority to enter a Ulysses contract only insofar as her expressed will at t1 is a (...) better expression of the values that remain attributable to her at t2 than is her expressed will at t2. (shrink)

Background The existing literature on sexuality and intimacy in residential care tends to focus on either the question of rights, or the value of autonomy. Where the literature does reference values other than autonomy, such values are considered in the context of being a guide to whether or not a resident is autonomous, rather than being important values in their own right. Objective This paper draws on qualitative data gathered as part of a larger study in order to inform practice (...) on how care workers respond to intimacy issues that arise with residents with dementia and to inform a general ethics of sex and sexuality, demonstrating that an approach which permits value pluralism can be appropriate in certain contexts. Research Design The qualitative data referred to in this paper was gathered from semi-structured interviews undertaken as part of a larger mixed-method research project. The interview text was analysed using Thorne’s methodological approach, interpretive description. Participants and research context The qualitative arm of the project consisted of semi-structured interviews conducted between October 2018 and October 2019 with participants (staff, residents and family members) recruited from 35 residential care homes in Aotearoa New Zealand. Ethical Considerations Participation was informed, voluntary and written consent was gained before interviews. The project was approved by the Massey University Human Ethics Committee (Northern), number NOR 18/25. Findings Analysis of the scenarios presented in this paper shows that decision-making around sexual intimacy involving people with dementia in a residential care setting is complex and requires recognizing and weighing the different values that may be a in play. Conclusion A focus on safety and consent to the exclusion of other values which matter morally in this context is a mistake which prevents care workers from providing appropriately person-centred care to residents, as policies which focus on the goal of care allow space for critical examination of issues which are likely to be highly context-sensitive. (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)

Hastings Center Report, Volume 52, Issue 5, Page 24-31, September–October 2022.

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)

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)

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)

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)

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)

Using this case, Lavazza and Reichlin (2018) explored the ethical dilemmas associated with decision making in people with Alzheimer’s disease (AD), specifically when their new preferences conflict...

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)

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)

Almost all jurisdictions where physician-assisted death is legal require that the requesting individual be competent to make medical decisions at time of assistance. The requirement of contemporary competence is intended to ensure that PAD is limited to people who really want to die and have the cognitive ability to make a final choice of such enormous import. Along with terminal illness, defined as prognosis of death within six months, contemporary competence is regarded as an important safeguard against mistake and abuse, (...) arguably the strongest objections to legalizing PAD.The insistence on contemporary competence is problematic. It means that someone who has dementia is ruled out as a candidate for PAD, even if she is terminally ill and suffering terrible and unrelievable pain. It also rules out individuals with strong and unwavering desires not to end their life in dementia. (shrink)

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)

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)

Agency is talked about by many as something that people living with dementia lose, once they've lost much else—autonomy, identity, and privacy, among other things. While the language of loss may capture some of what transpires in dementia, it can obscure how people living with dementia and their loved ones share agency through sharing capacities for memory, language, and decision‐making. We suggest that one consequence of adopting a framework of loss is that it makes the default response to changes in (...) agency the substitution of a family member's agency for the purported lost agency of someone living with dementia. We argue for an alternative framework in which sharing agency is recognized as a central feature of living with dementia. Building on the work of relational theorists, we argue for the value of thinking about agency in dementia as fundamentally shared, and explore potential implications for treatment, caregiver support, and building dementia‐friendly environments. (shrink)

In his essay on paternalism and personal identity, Wilkinson draws on Derek Parfit’s Reasons and Persons (1984) to call for a reappraisal of the role of paternalism in healthcare decision-making in situations in which patients with capacity make decisions which are likely to have harmful consequences for themselves.1 The imperative to respect autonomy, coupled with JS Mill’s insistence that the state is justified in interfering with an individual’s liberty only in situations in which she harms or threatens to harm another (...) person, leaves clinicians with little room to constrain decisions in which a patient’s choice may seriously harm her. Parfit reduces personal identity to the continuity of psychological and physical traits across the lifecourse, and suggests that, since these sets of characteristics change significantly over time, it may make more sense to view a person at different time points as different ‘selves’, rather than as the same person. Parfit’s defence of paternalism involves arguing that, given this inevitable lack of continuity, causing harm to one’s future self is analogous to harming another person and that intervening to prevent this may be justifiable in accordance with the Harm Principle.2 The issue of personal identity has received considerable attention in the philosophical literature and it remains a vexed question. Parfit’s argument, along with the thought experiments on …. (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)

Background: Even in countries with an opt-out or presumed consent system, relatives have a considerable influence on the post-mortem organ harvesting decision. However, their reflection capacity may be compromised by grief, and they are, therefore, often prone to choose refusal as default option. Quite often, it results in late remorse and dissatisfaction. So, a high-quality reflection support seems critical to enable them to gain a stable position and a long-term peace of mind, and also avoid undue loss of potential grafts. (...) In practice, recent studies have shown that the ethical aspects of reflection are rarely and often poorly discussed with relatives and that no or incomplete guidance is offered. No review of the literature is available to date, although it could be of value to improve the quality of the daily practice. Objectives: The objective was to review and synthesize the main concepts and approaches, theories and practices of ethical reflection support of the relatives or surrogates of potential post-mortem organ donors. Research design: A narrative review was performed in the medical, psychological and ethical fields using PubMed, PsycArticles and Web of Science databases (1980–2020). Results: Out of 150 papers, 25 were finally retained. Four themes were drawn: the moral status of the potential post-mortem organ donor, the principlistic approach with its limits and critics, the narrative approach and the transcendental approach. Discussion: This review suggests an extension of psychological support towards ethical reflection support. The process of helping relatives in their ethical exploration of post-mortem organ donation is psychologically and morally characterized. The need for specialized professionals educated and experienced both in clinical psychology and in health ethics to carry out this task is discussed. Practical impact: This review could contribute to optimize the quality of the ethical reflection support by initiating an evolution from an empirical, partial and individual-dependent support to a more systematized, professionalized and exhaustive support. (shrink)