Two ethical frameworks have dominated the discussion of organ donation for long: that of property rights and that of gift-giving. However, recent years have seen a drastic rise in the number of philosophical analyses of the meaning of giving and generosity, which has been mirrored in ethical debates on organ donation and in critical sociological, anthropological and ethnological work on the gift metaphor in this context. In order to capture the flourishing of this field, this article distinguishes between four frameworks (...) for thinking about bodily exchanges in medicine: those of property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. These frameworks represent four different ways of making sense of donation of organs as well as tissue, gametes and blood, draw on different conceptions of the relations between the self and the other, and bring out different ethical issues as core ones. The article presents these frameworks, argues that all of them run into difficulties when trying to make sense of reciprocity and relational interdependence in donation, and shows how the three gift-giving frameworks (of heroism, sacrifice and aporia) hang together in a critical discussion about what is at stake in organ donation. It also presents and argues in favour of an alternative intercorporeal framework of giving-through-sharing that more thoroughly explicates the gift metaphor in the context of donation, and offers tools for making sense of relational dimensions of live and post mortem donations. (shrink)

Phenomenological analyses of ageing and old age have examined themes such as alterity, finitude, and time, not seldom from the perspective of “healthy” aging. Phenomenologists have also offered detailed analyses of lived experiences of illness including lived experiences of dementia. This article offers a phenomenological account of what we label as entering the grey zone of aging between “healthy” aging and aging with a disease. This account is developed through a qualitative phenomenological philosophy analysis of elderly persons’ lived experiences of (...) being tested for dementia through primary care in Sweden, i.e., within a cultural context where dementia commonly is understood as a frightening a loss of self even though this understanding also is questioned. To enter this grey zone of aging, we argue, does not dissolve dynamic self-becoming but can involve an experience of oneself as being old. Further, in the grey zone, the self experiences itself as neither fully healthy nor as having a disease, and as needing to negotiate and live this ambiguity. To enter this grey zone is to enter an affectively charged, sociocultural and medicalized zone, and while the self can still act in different ways within it, staying in the grey zone can result in a re-orientation in the self’s mode of being, in ways that are thoroughly beyond its control. To stay in the grey zone can have detrimental effects on the self, even though the self does not have a disease: the self can become “stuck” in a reflective mode of attending to embodiment, aging, health, and disease. (shrink)

Recent years have seen a rise in the number of sociological, anthropological, and ethnological works on the gift metaphor in organ donation contexts, as well as in the number of philosophical and theological analyses of giving and generosity, which has been mirrored in the ethical debate on organ donation. In order to capture the breadth of this field, four frameworks for thinking about bodily exchanges in medicine have been distinguished: property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. Unfortunately, they (...) all run into difficulties in terms of both making sense of the relational dimensions of postmortem and live organ donations and being normatively adequate in the sense of shedding light and providing guidance on ethical concerns when body parts are donated. For this reason, this article presents a phenomenological framework of giving-through-sharing, based on Maurice Merleau-Ponty’s philosophy. This framework makes sense of relational dimensions of postmortem and live organ donation. It also sheds light on three highly debated concerns in organ donation ethics: indebtedness on the part of recipients, the fact that some live donors do not experience donation as a matter of choice, and the potentially painful experience of donors’ relatives, who need to make decisions about postmortem organ donation at a time of bereavement. It can indirectly support what may be called a normalization of bodily exchanges in medicine. (shrink)

ABSTRACTThis paper brings together a phenomenological and vulnerability-theoretic approach to dementia. The paper challenges the view that subjects with dementia can simply be understood in terms of diminished cognitive capacities or that they have lost all vestiges of personhood or the capacity for meaningful interaction. Instead, drawing on vulnerability theory and the phenomenological work of Kristin Zeiler and Lisa Käll, an alternative view of persons with dementia is offered that is based on intersubjective and intercorporeal relations and accomplishments. A vulnerability (...) approach to dementia is developed that not only provides the basis for empathetic responses to illnesses such as dementia but also points to the intersubjective constitution of subjects more generally. The argument developed is that the notion of vulnerability designates a form of openness to others and that such openness is a precondition for empathy. (shrink)

The person with dementia: A plea for a (non-metaphysical) relational notion of personhood In this article we explore the notions of personal identity and personhood, using concrete descriptions of the experiences of people living with dementia as a case study. From an analytical point of view we argue against memory or psychological-continuity criteria of personal identity as too cognitive. Instead we focus on embodiment. The person with dementia, as an embodied human being, is numerically the very same person (s)he was (...) before. Moreover, we argue against a metaphysical notion of personhood. Personhood is constituted by the reactive attitudes of other persons: someone becomes a person and remains a person by being received, and almost literally incorporated, in a community of persons. From a phenomenological point of view we show that embodied intersubjectivity is crucial for the recognition of one person by another. We use Merleau-Ponty’s notion of intercorporality to show that there are ways of keeping people with dementia within this community of persons, of keeping in touch with them, even when many of their cognitive capacities are gone, for instance by singing or dancing together. As long as there is still a shared world, it is up to us to keep recognising someone with dementia as a person, and not as ‘an empty shell’. (shrink)

In this paper, I explore the phenomenon of a felt sense of the concrete other. Although the importance of this phenomenon is recognised in the contemporary discussion on intercorporeality, it has not been subjected to systematic phenomenological analysis. I argue that the felt sense of the other is an aspect of intercorporeal body memory in so far as it is a habituation to something like the concrete other’s expressive style. Because it is inherently a sensory phenomenon, I speak of an (...) embodied sensorium of the other. I illustrate the phenomenon through contrasting case-vignettes taken from research in early parental bereavement. Based on this, I identify five modalities that outline the fundamental contours of a sensorium and specify that in their intermodal and synesthetic concretion they account for the felt sense of the other. Finally, I argue that the existential importance of the phenomenon is rooted in the distributed nature of my sense of self and self-familiarity. To illustrate this, I draw parallels between the felt sense of the concrete other and the felt sense of home and suggest that though there are also distinct differences between the two phenomena, they are rooted in the same underlying existential need for feeling-at-home in the world. (shrink)

This article explores an example of person-centred care: the work of so-called renal care coordinators. The empirical basis of the article consists of qualitative interviews with renal care coordinators, alongside participant observations of their patient interactions. During the analyses of the empirical material, I found that that one of the coordinators’ most fundamental ambitions is to get to know who the patient is. This is also a central tenet of person-centred care. The aim of the article is not only to (...) argue for the plausibility of this tenet, but also, and more importantly, to highlight and explore its implications in the context of healthcare, through the example of renal care coordination. By drawing on the philosophy of Hannah Arendt, the article shows that the disclosure of who the patient is that takes place in person-centred care requires speech and action, which are modes of human activity that initiate processes characterized by unpredictability, uncertainty, and irreversibility. This unpredictability, uncertainty, and irreversibility, found to be inherent in person-centred care, is then discussed in relation to the pursuit of certainty characterizing contemporary evidence-based medicine. At the end of the article the conclusion is drawn that, if healthcare is to be person-centred, it must find ways of accommodating the contradictory pursuits of certainty and uncertainty found in evidence-based medicine and person-centred care respectively. (shrink)

Although by no means mainstream, phenomenological approaches to bioethics and philosophy of medicine are no longer novel. Such approaches take the lived body —as opposed to the body understood as a material, biological object —as their point of departure to offer a more robust understanding of a plurality of experiences that go far beyond those surrounding disease...

In search of our highest capacities, cognitive scientists aim to explain things like mathematics, language, and planning. But are these really our most sophisticated forms of knowing? In this paper, I point to a different pinnacle of cognition. Our most sophisticated human knowing, I think, lies in how we engage with each other, in our relating. Cognitive science and philosophy of mind have largely ignored the ways of knowing at play here. At the same time, the emphasis on discrete, rational (...) knowing to the detriment of engaged, human knowing pervades societal practices and institutions, often with harmful effects on people and their relations. There are many reasons why we need a new, engaged—or even engaging—epistemology of human knowing. The enactive theory of participatory sense-making takes steps towards this, but it needs deepening. Kym Maclaren’s idea of letting be invites such a deepening. Characterizing knowing as a relationship of letting be provides a nuanced way to deal with the tensions between the knower’s being and the being of the known, as they meet in the process of knowing-and-being-known. This meeting of knower and known is not easy to understand. However, there is a mode of relating in which we know it well, and that is: in loving relationships. I propose to look at human knowing through the lens of loving. We then see that both knowing and loving are existential, dialectic ways in which concrete and particular beings engage with each other. (shrink)

By drawing on Jean-Luc Nancy’s philosophy of ontological relationality, this article explores what it means to be a ‘we’ in breast cancer. What are the characteristics—the extent and diversity—of couples’ relationally lived experiences of bodily changes in breast cancer? Through analyzing duo interviews with diagnosed women and their partners, four ways of sharing an embodied life are identified. While ‘being different together’, partners have different, albeit connected kinds of experiences of breast cancer. While ‘being there for you’, partners take care (...) of each other in mutually dependent ways. While ‘being reconnected to you’, partners relate to each other through intimacy and sexuality. While ‘being like you’, partners synchronize their embodied daily lives to one another, sometimes up to the point that the self cannot be distinguished from the other anymore. These ways reveal that being a ‘we’ involves complex affective, bodily encounters in which the many fault lines that both separate partners into individual selves and join them together as a unity are continuously reshaped and negotiated. Being a ‘we’ may be understood as something we have to do. Therefore, in being true to the legacy of Nancy, we argue at the end of this article for a sensible praxis of sharing a life and body, particularly in breast cancer. (shrink)

For caregivers of minimally communicative individuals, providing support in the absence of clearly meaningful responses is ethically fraught. We conducted a secondary analysis of qualitative data from caregivers of individuals who are minimally communicative, including persons with advanced dementia and individuals in disorders of consciousness. Our analysis led to two central claims: (1) Personhood is a threshold concept that is situated, relational, and dynamic and (2) in circumstances in which personhood is difficult to judge, caregivers can “fill the gap” to (...) reach the threshold through a repertoire of strategies. Because personhood is in part an attribution from others, a situational loss of personhood does not preclude restoration, nor does it eliminate moral status. (shrink)