Neuropalliative care developed to address the needs of patients living with life‐limiting neurologic disease. One critical consideration is that disease‐related changes to cognition, communication, and function challenge illness experiences and care practices. We conducted an ethnography to understand neuropalliative care as a phenomenon; how it was experienced, provided, conceptualized. Personhood served as our conceptual framework; with its long philosophical history and important place in nursing theory, we examined the extent to which it captured neuropalliative experiences and concerns. Personhood contextualized complex (...) losses, aligning the impact of functional and relational changes. Cognition, communication, and functional alterations stretched conceptions of personhood, insinuating it can be relational, fluid, adaptive. Although normative conceptions of personhood guided research and decision‐making, ethical considerations suggested personhood could be transformed, remade. We consider the implications of our findings through three themes. First, we examine how literature on illness experience fails to integrate the realities of people living with and dying from neurologic disease; we counter this by interrogating the concept of experience. Second, we turn to Ricoeur's work on recognition to illuminate relational conceptions of personhood to inform care practices. Finally, we reflect on how personhood can bridge the gap left by functional changes, enhance relational engagement, and promote dignity at the end of life. (shrink)

In this paper, I outline the cumulative network model of the self. This model articulates the self as relational, recognizing social relations as constitutive of the self. The theory arises out of concerns about the individualistic paradigms of two main frameworks in the analytic philosophical literature on personal identity, namely, the psychological and the animalist approaches to personhood and is explicitly inspired by feminist theories on relational autonomy and self. I argue that “relationality” is not only social, but that the (...) self is relational throughout, psychologically, physically, biologically, culturally, semantically, as well as socially. Hence, the self is a network of relations. The model also aims to recognize that temporality or historicity is constitutive of the self, that the self is a process, not a static three-dimensional thing. Hence, the self is a cumulative network. (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)

This paper responds to four commentators (Diana Tietjens Meyers, Lawrence Cahoone, Vincent Colapietro, and Scott L. Pratt) on my bookThe Network Self: Relation, Process, and Personal Identity(2019). Aspects of the book focused on and about which I respond include reflexive communication (Meyers); identity and integrity (Cahoone); embodiment, self‐deception, and autonomy (Colapietro); and social location and power (Pratt). I also clarify my strategy in the book, namely, to shift the ontological framework away from the dualistic mind/body or psychological/animalist distinction and embrace (...) the idea that as relational processes selves are particular kinds of natural complexes (to use a term from Justus Buchler). In doing so, I aim to avoid metaphysically narrow views of human selves or persons, and to provide a framework for conceptualizing selves in both abstract and practical terms. (shrink)