Even though it is not a methodology on the level of principlism or casuistry, narrative bioethics nonetheless contributes to and guides decision-making in the field of biomedical ethics. However, unlike other methodologies, the narrative approach lacks a set of specific patterns and formal rules for doing so. This deficiency leaves this approach more vulnerable to the influence of historical factors; in fact, the vital history of a person is made up of thousands of scenes, which one must select and group (...) under different norms. Yet the historicity of narrative does not destroy its normative value; rather, it gives rise to a confluence of stories that contradict one another on the basis of their practical consequences. This problem is less severe in traditional cultures, where some stories take precedence over others according to the normative value conferred through the supposed authority of their sources. But it manifests in an intense manner within current multicultural societies. It is imperative to find the thread that leads outside the labyrinth of subjectivity. This paper shows that the end of this thread lies, paradoxically, not in actions but in the subject-actors that perform them—specifically when such subjects are conceived as dramaturgical characters in narrative. (shrink)

In some quarters within philosophy of medicine, more particularly in the phenomenological approaches, naturalism is looked upon with suspicion. This paper argues, first, that it is necessary to distinguish between two expressions of this attitude towards naturalism: phenomenological approaches to illness disagree with naturalism regarding various theoretical claims and they disapprove of naturalism on an ethical level. Second, this paper argues that both the disagreement with and the disapproval of naturalism are to a large extent confused. It then offers some (...) proposals to set up an agenda for future collaboration. (shrink)

Ill persons suffer from a variety of epistemically-inflected harms and wrongs. Many of these are interpretable as specific forms of what we dub pathocentric epistemic injustices, these being ones that target and track ill persons. We sketch the general forms of pathocentric testimonial and hermeneutical injustice, each of which are pervasive within the experiences of ill persons during their encounters in healthcare contexts and the social world. What’s epistemically unjust might not be only agents, communities and institutions, but the theoretical (...) conceptions of health that structure our responses to illness. Thus, we suggest that although such pathocentric epistemic injustices have a variety of interpersonal and structural causes, they are also sustained by a deeper naturalistic conception of the nature of illness. (shrink)

This paper proposes that spiritual persons are an excellent focus for the study of 'living religion' and offers a methodology for doing so. By ‘spiritual persons’, I have in mind both exemplary figures – like Jesus or the Buddha – and the multitude of ‘ordinary’ spiritual persons whose lives are led in aspiration to the spiritual goods the exemplars manifest (enlightenment, say, or holiness). I start with Linda Zagzebski's recent argument that moral persuasion primarily occurs through encounters with exemplars of (...) moral qualities, of a sort that invite admiration and emulation. A plurality of modes of spiritual exemplarity is distinguished, each reflecting a distinct form of spiritual aspiration, which will show in the lives of the members of different traditions. I develop this claim by focusing on the ways that spiritual aspirants can encounter exemplars through their depictions in spiritual narrative. It emerges that narrative encounters can activate certain forms of admiration and enable certain forms of emulation if they depict the suffering of exemplars. (shrink)

The Stoics considered that in order to die well, one must previously have lived (well) and not merely existed, an assertion which will not be contested in this paper. The question raised here is whether an individual whose life expectancy is jeopardized by serious illness or whose life has not been lived to the ‘full’ for whatever reason should have to abandon all hope or, alternately, whether that life could still somehow be saved (in an ethical sense). One clear obstacle (...) to achieving this stems from (bad) moral character, given that moral character is an element which conditions an individual’s moral behaviour, as pointed out by Beauchamp and Childress and particularly Pellegrino and Thomasma. The transformation of moral character requires time and effort but the testimonies of patients who have given their lives a radical new direction upon being diagnosed with a serious illness seem to show the existence of a peculiar phenomenon of moral catharsis. In this paper we attempt to illustrate that this alleged phenomenon is not the result of a kind of cataleptic impression but rather the result of a dialectic and narrative process, during which a first hope of healing is dashed, unveiling a new sense in the illness. Its fulfillment provides the patient with a final hope. (shrink)

There is no systematic knowledge about how individuals with Locked-in Syndrome experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on (...) Quality of Life provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in “embodied cognition” and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity. (shrink)

The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients’ understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the (...) article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates. Three potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients’ views and the medico-professional view of disease. Kon’s four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research. The combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients’ actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected. (shrink)