As the global prevalence of Alzheimer’s disease increases, the need to understand family caregiving becomes increasingly pressing. I argue that there is an under-recognized form of caregiving for people with early to mid-stage Alzheimer’s disease. This type of caregiving involves, roughly, helping people reason through their values. It arises along with the loss of the capacity for executive functioning. Moreover, it is prone to give rise to moral distress, which is an under-recognized vulnerability in family caregiving. Categories of family caregiving (...) thus need to be expanded, and moral distress needs to be recognized not only in the context of nursing. (shrink)

The personal identity relation is of great interest to philosophers, who often consider fictional scenarios to test what features seem to make persons persist through time. But often real examples of neuroscientific interest also provide important tests of personal identity. One such example is the case of Phineas Gage – or at least the story often told about Phineas Gage. Many cite Gage’s story as example of severed personal identity; Phineas underwent such a tremendous change that Gage “survived as a (...) different man.” I discuss a recent empirical finding about judgments about this hypothetical. It is not just the magnitude of the change that affects identity judgment; it is also the negative direction of the change. I present an experiment suggesting that direction of change also affects neuroethical judgments. I conclude we should consider carefully the way in which improvements and deteriorations affect attributions of personal identity. This is particularly important since a number of the most crucial neuroethical decisions involve varieties of cognitive enhancements or deteriorations. (shrink)

John Bayley’s Elegy for Iris, his memoir about living with Iris Murdoch after the onset of dementia, unsettles models of mind and agency that ignore human relationship, dependency, and the vulnerabilities of the cared for and the carer. Experiencing Iris as ambiguously absent and present while he attentively cares for her, Bayley frames his memoir as an elegy, a reflection on love and loss that conventionally represents two subjects—the author and the one he lost. Bayley’s acts of care and his (...) stories about his wife, both as she was and as she has become, sustain her moral worth as a person. Writing as an elegist, a survivor entitled to be heard, Bayley moves his experience of caring and loss from personal to social realms, from speaker to listener, opening ethical space for consolation and for social responsibility for the vulnerable. (shrink)

A diverse group of scholars reflect on the scholarship of Robert M. Veatch, the breadth of which is unmatched in modern day bioethics. Essays were written by both philosophers and clinician-philosophers, by contemporaries and mentees. They span the breadth of Bob’s work and include analyses of his ideas about death, dying and organ transplantation, human experimentation and research ethics, disability, equality and justice, the doctor-patient relationship, the history of bioethics, as well as his pedagogical approach to teaching bioethics to clinicians (...) across the health care spectrum. Recognition of Bob’s influence in the modern field of bioethics and the challenges that persist are clearly identified. (shrink)

In a recent JME article, Guidry-Grimes, Dean and Victor offer some signal and challenging insights into the ethical analysis of covert medication and in particular when administered via food. They warn of impacts on identity likely to emerge from using food in this way. In particular, they caution against allowing families to be involved in covert medication, in the light of their central role in sustaining identity. Their analysis has particular purchase in resource rich contexts and those contexts where individual (...) identity is a central concern. But it is less clear that the article’s insights are relevant to other contexts. This article places the analysis of covert medication and identity in a wider context, arguing both that the focus on identity is equally significant when analysing potential alternatives to covert medication, such as coercion; and that the ethical analysis of covert medication offered by Guidry-Grimes, Dean and Victor lacks global applicability. It seems to lack application particularly in resource-poor contexts, and in cultures where identity and community are interconstituted. (shrink)

Society and social structures play an important role in the formation and evaluation of concepts and practices in clinical ethics. This is evident in the ways the authors in this issue explore a wide range of arguments and concepts in clinical ethics including moral distress and conscience based practice, phenomenological interview techniques and gender dysphoria, continuous deep sedation (CDS) at the end of life, the notion of patient expertise, ethically permissible medical billing practices, the notion of selfhood and patient centered (...) care in dementia patients, and the definition of minimal risk as used in research regulations. (shrink)

In this paper, I will argue that there is a deep connection between home-based care, technology, and the self. Providing the means for persons to receive care at home is not merely a kindness that respects their preference to be at home: it is an important means of extending their selfhood and respecting the unique selves that they are. Home-based technologies like telemedicine and robotic care may certainly be useful tools in providing care for persons at home, but they also (...) have important implications for sustaining selfhood in ways that are of value to individuals and those who care for them. I will argue, by appealing to Hilde Lindemann’s notion of “holding” persons’ identities in place, that technological interventions are not only useful tools for improving and sustaining health and good care at home, but that they may also help to extend our personal identities and relational capacities in ways that are practically and ethically good. Because of these important goods, I will claim that there is a prima facie moral duty to do this “holding” work and that it is best done by family members and loved ones who are well suited to the job because of their history and relationship with the individual that needs to be “held” in place. (shrink)

Inside Out develops novel cinematic means for representing memory, emotion and imagination, their interior relationships and their social expression. Its unique animated language both playfully represents pre-teenage metacognition, and is itself a manner of metacognitive interrogation. Inside Out motivates this language to ask two questions: an explicit question regarding the social function of sadness, and a more implicit question regarding how one can identify agency, and thereby a sense of developing selfhood, between one’s memories, emotions, facets of personality, and future-thinking (...) imagination. Both the complexity of the language Inside Out develops to ask these questions, and the complicated answers the film provides, ultimately serve as a manner of recognition of the effortfulness of finding one’s place in the world. This article talks sequentially through the complex representative systems Inside Out advances in order to pay homage to the ways in which metacognitive cinema – as well as discussions and hermeneutic readings around that cinema – can make viewers feel recognised for invisible, internal labour that is existentially difficult to share due to its very interiority; an interiority that is reconstructed in imaginative processes such as autobiographical reminiscence, and filmic animation. (shrink)

Our autonomy can be compromised by limitations in our capacities, or by the power relationships within which we are embedded. If we insist that real consent requires full autonomy, then virtually no sex will turn out to be consensual. I argue that under conditions of compromised autonomy, consent must be socially and interpersonally scaffolded. To understand consent as an ethically crucial but nonideal concept, we need to think about how it is related to other requirements for ethical sex, such as (...) the ability to exit a situation, trust, safety, broader social support, epistemic standing in the community, and more. (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)

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)

Societal aging raises challenging ethical questions regarding the just distribution of health care between young and old. This article considers a proposal for age-based rationing of health care, which is based on the prudential life span account of justice between age groups. While important objections have been raised against the prudential life span account, it continues to dominate scholarly debates. This article introduces a new objection, one that develops out of the well-established disability critique of social contract theories. I show (...) the implications of this critique for the prudential life span account and for the special case of age-group justice. The result is that age-based rationing based on the prudential life span approach is not supported, and that the prudential life span approach itself is not the best way to think about allocating health care between age groups. I propose an alternative approach that avoids the disability objection, and consider its implications for specific proposals for age-based rationing of health care. (shrink)

Our 2021 article, "Dying Well in Nursing Homes During COVID-19 and Beyond: The Need for a Relational and Familial Ethic," addresses the response to the COVID-19 pandemic within nursing homes and the impact it had on the lives of residents, care providers, and families. We acknowledge that, at the height of the pandemic, when infection and death rates were soaring in these facilities, extreme "lockdown" measures may have been justified; but these measures resulted in significant relational costs. The collateral damage (...) caused by these lockdown measures included extreme isolation, loss of community, and experiences of confusion, depression, and mental decline for the elderly residents that... (shrink)

The covert administration of medication occurs with incapacitated patients without their knowledge, involving some form of deliberate deception in disguising or hiding the medication. Covert medication in food is a relatively common practice globally, including in institutional and homecare contexts. Until recently, it has received little attention in the bioethics literature, and there are few laws or rules governing the practice. In this paper, we discuss significant, but often overlooked, ethical issues related to covert medication in food. We emphasise the (...) variety of ways in which eating has ethical importance, highlighting what is at risk if covert administration of medication in food is discovered. For example, losing trust in feeders and food due to covert medication may risk important opportunities for identity maintenance in contexts where identity is already unstable. Since therapeutic relationships may be jeopardised by a patient’s discovery that caregivers had secretly put medications in their food, this practice can result in an ongoing deception loop. While there may be circumstances in which covert medication is ethically justified, given a lack of suitable alternatives, we argue that in any particular case this practice should be continually re-evaluated in light of the building moral costs to the relational agent over time. (shrink)

It is commonly assumed that many, if not most, adult children have moral duties to visit their parents when they can do so at reasonable cost. However, whether such duties persist when the parents lose the ability to recognise their children, usually due to dementia, is more controversial. Over 40% of respondents in a public survey from the British Alzheimer’s Society said that it was “pointless” to keep up contact at this stage. Insofar as one cannot be morally required to (...) do pointless things, this would suggest that children are relieved of any duties to visit their parents. In what appears to be the only scholarly treatment of this issue, Claudia Mills has defended this view, arguing that our duties to visit our parents require a type of relationship that is lost when parents no longer remember who their children are. This article challenges Mills’ argument. Not only can children be duty-bound to visit parents who have lost the ability to recognise them, I argue that many children do in fact have such duties. As I show, these duties are grounded in any special interests that their parents have in their company; the fact that visiting their parents might allow them to comply with generic duties of sociability; and/or the fact that such visits allow them to express any gratitude that they owe their parents. (shrink)

It is a common practice for family members to bring food to hospitalized loved ones. However, in some cases, this food contravenes a patient's dietary plan. Such situations can create significant tension and distrust between health care professionals and families and may lead the former to doubt a family's willingness or ability to support patient recovery. This case‐study essay offers an ethical analysis of these situations. We draw on Hilde Lindemann's work to argue that providing food to family members is (...) an important way that families discharge their moral functions of caring for their members and holding them in their identities. When family members are hospitalized, other means of performing these functions are limited. Acknowledging the ethical importance of feeding family members alongside the medical need for dietary restrictions, we offer strategies for creative problem‐solving that center diet as a subject for shared decision‐making and regular, ongoing communication among health care professionals, patients, and families. (shrink)

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

John Bayley was married to Iris Murdoch for 45 years. In the last few years of her life, Murdoch developed Alzheimer’s, and John Bayley wrote a memoir about their life together, including the difficulties of looking after her with the disease. Although the Memoir was generally well-received, some critics called the publication an act of betrayal, because of the intimacy of some of the revelations, because of the public reduction of a great mind to a sick old woman, and especially (...) because of Murdoch’s inability to consent or respond to it. I agree, but I think it was even worse than that. I want to distinguish the ‘shallow’ betrayal of a ‘three-dimensional’ person in the narrow timeframe of the present from a ‘deep’ betrayal – and I will argue that Bayley is guilty of both. Deep betrayal essentially involves a close intimate of the victim betraying the ‘four-dimensional’ person across her whole life, as well as betraying the relationship between them. Such a betrayal inevitably casts a shadow back on our understanding of the earlier relationship between Bayley and Murdoch. (shrink)

Deep Brain Stimulation is an FDA-approved treatment for the symptoms of Parkinson's disease, essential tremor, dystonia, and epilepsy—with experimental use for mood disorders. DBS systems consist of a signal generator, typically implanted in the user's chest, that sends impulses to electrodes implanted in select areas of the user's brain. These signals change the activity of areas of the brain associated with unwanted symptoms. Several research groups have begun trials to use DBS as a treatment for psychiatric disorders. DBS, however, comes (...) with a... (shrink)

This article presents and argues for love as part of philosophy of education, more specifically the pedagogical relationship. In light of the concept of an ethics of rhythm, inspired by Roland Barthes, it is argued that the concept of rhythms sheds critical light on the asymmetrical and oppressive potential of the pedagogical relationship, but also on the liberating one. Furthermore, this argument is put into a broader debate about the role of academia as hospitable, inviting and inclusive, which in turn (...) accentuate counter-forces originating from the pedagogical relationship. (shrink)

This Dissertation argues for a care-centrically grounded account of relational personhood and widely realized diachronic personal identity. The moral distinction between persons and non-persons is arguably one of the most salient ethical lines we can draw since many of our most fundamental rights are delineated via the bounds of personhood. The problem with drawing such morally salient lines is that the orthodox, rationalistic definition of personhood, which is widespread within philosophical, medical, and colloquial spheres, excludes, and thereby de-personifies, a large (...) number and a great variety of human beings such as neonates, young children, the elderly who suffer from dementia, individuals with severe cognitive disabilities, and patients in vegetative states. The reconceptualization of personhood necessary for a more inclusive definition ought to originate with an appropriate moral grounding. To this end, this Dissertation grounds the notion of personhood in the care ethical sphere, thereby emphasizing the role of care relations in the maintenance of the moral consideration of vulnerable individuals. This Dissertation argues that grounding the concept of a person in care relations entails a relational account of personhood, which, along with the insights of the Extended Mind and Social Manifestation Theses, leads to an extended and externalized understanding of diachronic identity, which allows fragile people to be held in their personal identities even if they themselves lack the capacities usually associated with moral personhood. As we trace a person’s identity through time, we track the various relational properties, which constitute personal narratives and thus act as a glue that binds such dynamic and often unique properties into stable, trackable narratives. Since care relations are morally relevant on a care-centric account of personhood, what is lost in cases where such care relating ceases is not merely of sentimental value, but of great moral importance as well. Morally meaningful care relations are not replaceable, and, by extension, neither are the narratives that are constituted by such unique and irreplaceable instances of relating. This Dissertation argues that the constitutive care relational nature of personal narratives makes such narratives irreplaceable and is precisely what makes persons so morally precious. (shrink)

In this paper we suggest an understanding of the self within the conceptual framework of situated affectivity, proposing the notion of an affectively extended self and arguing that the construction, diachronic re-shaping and maintenance of the self is mediated first by affective interactions. We initially consider the different variations on the conception of the extended self that have been already proposed in the literature. We then propose our alternative, contextualising it within the current debate on situated affectivity. While the idea (...) that we exploit the external environment in order to manage our affective life is now rather widespread among philosophers, its potential consequences for and connections with the debate on the self remain underexplored. Drawing on James’ intuition of the “material self”, which clearly connects the self and the emotions in agency, and broadly envisioning an extension of the self beyond its organismic boundaries, we propose our pragmatist conception of the self: an affectively extended self that relies on affective artifacts and practices to construct its identity extended beyond skin and skull. (shrink)