This article explores how Alzheimer’s disease caregivers struggle under the impact of a parent’s memory loss on their own personality. In particular, it analyses how caregivers perceive and, thus, present their experiences of the ever intensifying caregiving activity in terms of a ‘journey’. In doing so, this work takes into account both the patient’s continuing bodily as well as cognitive decline and its intricately linked influence on the caregiver’s physical and emotional stability. Equally, this study investigates how caregivers portray memory (...) loss, and how their portrayal fits into our conceptualisation of illness narratives and the culture of autobiographical writing. (shrink)

Over the last three decades, the graphic novel has developed both in sophistication and cultural importance, now being widely accepted as a unique form of literature (Versaci 2007 ). Autobiography has proved to be a successful genre within comics (the word is used in the plural to denote both the medium and the philosophy of the graphic form) and within this area a sub-genre, the memoir of the artist’s own disease or suffering, sometimes known as the graphic pathology, has arisen (...) (Green and Myers 2010 ). Storytelling and healing have been linked since ancient times, and the disclosure of ones story forms part of the psychotherapeutic treatment of trauma (Herman 1997 ). This paper will examine, in both graphic and textual form, whether, among the myriad reasons that one might embark upon the labour intensive work of making a graphic memoir, some artists might be seeking some form of healing or catharsis through their work. (shrink)

An increasing number of patients receive diagnoses of disease without having any symptoms. These include diseases detected through screening programs, as incidental findings from unrelated investigations, or via routine checks of various biological variables like blood pressure or cholesterol. In this article, we draw on narrative identity theory to examine how the process of making sense of being diagnosed with asymptomatic disease can trigger certain overlooked forms of harm for patients. We show that the experience of asymptomatic disease can involve (...) ‘mismatches’ between one’s beliefs about one’s health status on the one hand, and bodily sensations or past experience on the other. Patients’ attempts to integrate these diagnoses into their self-narratives often involve either forming inaccurate beliefs about bodily sensations and/or past experience, or coming to believe that feelings and experience do not necessarily track or predict health status, leading to an ongoing sense of vulnerability to ill health. These resulting alterations in self-understanding can sometimes be considered harmful, in view of their implications for ascriptions of responsibility and ongoing anxiety. (shrink)

The Stoics considered that in order to die well, one must previously have lived 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. One clear obstacle to achieving this stems from (...) 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)

Phenomenological healthcare research should include the lived experiences of a broad group of healthcare users. In this paper it is shown how shadowing can give a voice to people in vulnerable situations who are often excluded from interview studies. Shadowing is an observational method in which the researcher observes an individual during a relatively long time. Central aspects of the method are the focus on meaning expressed by the whole body, and an extended stay of the researcher in the phenomenal (...) event itself. Inherent in shadowing is a degree of ambivalence that both challenges the researcher and provides meaningful insights about the phenomenon. A case example of a phenomenological study on the experiences of elderly hospital patients is used to show what shadowing yields. (shrink)

Conserving the vitality of suffering: addressing family constraints to illness conversationsWhen persons are confronted with life‐threatening or chronic illness, there is always a possibility that family members other than the person experiencing the illness also suffer as they attempt to manage their own distress. This paper describes exemplars from a hermeneutic study that explored therapeutic conversations between nurses and families who were living with a member experiencing ischaemic heart disease. These conversations uncovered the complexity of both individual and family suffering (...) following acute cardiac illness events, and called attention to nursing practices that addressed some of the ways that family members were constrained from having conversations about the illness. When spaces were created for these conversations to occur, possibilities for making sense of illness and suffering were revealed as vital. These understandings support the efforts of family members to sustain and conserve family relationships in the face of illness and suffering, and inform both the professional and personal lives of nurses. (shrink)

This study elaborates on narrative resources emerging in the treatment of longlasting musculoskeletal and psychosomatic disorders in Norwegian psychomotor physiotherapy. Patients’ experiences produced in focus group interviews were analyzed from a narrative perspective, combining common themes across groups with in depth analysis of selected particular stories. NPMP theory expanded by Løgstrup’s and Ricoeur’s philosophy, and Mattingly’s and Frank’s narrative approach provided the theoretical perspective. Patients had discovered meaning imbued in muscular tension. Control shifted from inhibiting discipline and cognitive strategies, towards (...) more contingence with gravity and sensation, and increased freedom to be what and who they were. Trust, time, open speech, and being respectfully listened to were described as therapeutic pre-conditions. The body was experienced as the source of their voice as their own. As tension patterns transformed, novel experience in sensation appeared to feed narrative imagination, reshaping past plots, embodied identity and future prospects. NPMP was disclosed as a treatment integrating detection, battle and repair as narrative subplots, but the core narrative was the journey of transformation. Novel embodied narrative resources nourished the quest for a life and identity in tune with the body as one’s own. (shrink)

Qualitative research methods in sport often advocate that to understand others, obtain significant knowledge and do ethically admirable research we should empathise with our participants by imagining being them. In philosophy, it is likewise often assumed that we can overcome differences between people through moral imagination: putting ourselves in the place of others, we can share their points of view, merge with them, and enter into their embodied worlds. Drawing partly on the view that imagination is embodied and the philosophy (...) of Bakhtin and Levinas, along with research on people's experiences of becoming disabled through playing sport, this paper problematises the assumption that we can imagine ourselves differently situated or being another person. It argues that our imagination and ability to put ourselves in the place of others is constrained partly by embodied experience and otherness. Some reflections on what this might mean for disability and sport research are then offered. (shrink)

The aim of this study is to describe how hermeneutic photography and one application of hermeneutic photography in particular, namely the photo-instrument, can be used as a health care intervention that fosters meaning (re-)construction of mental illness experiences. Studies into the ways how patients construct meaning in illness narratives indicate that aesthetic expressions of experiences may play an important role in meaning making and sharing. The study is part of a larger research project devoted to understanding the photostories that result (...) from groups of psychiatric patients using the photo-instrument. Within a focused ethnography approach we employed a qualitative design of a single case study. Text analysis of photostories was combined with observational data. Data were analyzed using hermeneutic theory. Participant observations were used for triangulation and complementarity. The interaction and collaboration between health care professionals and patients in the context of a photo group emerged as core concept that underlies the photo-instrument. The interaction triggered a reframing of meaning in the patient’s illness narrative that offered new perspectives on positive identity growth. The role of visualizing meaning in images was found to lend a dynamic power to the process and triggered a dialectic between real life circumstances and imagination played out in the context of situated action. The findings suggest that a positive reframing of meaning in illness narratives is facilitated by the photo-instrument. (shrink)

This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent and/or (...) privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research. (shrink)

Ethics consultation in institutions of the healthcare system has been given a standard form based on three pillars: education, the development of guidelines and concrete ethics consultation in case conferences. The spread of ethics committees, which perform these tasks on an organizational level, is a remarkable historic achievement. At the same time it cannot be denied that modern ethics consultation neglects relevant aspects of care ethics approaches. In our essay we present an “ethics of care” approach as well as an (...) empirical pilot project—“Ethics from the bottom up”—which organizes ethics consultation based on this focus. Findings and philosophy of the project will be discussed as far as relevant for ethics consultation in the healthcare system. (shrink)

Objectives The dominant role-based conceptualisations of athletic identity have recently been challenged in favour of theoretical perspectives that view identity as a complex cultural construction. In the present study, we analysed empirical studies on athletic identity positioned in narrative and discursive approaches to gain an insight into the use and subsequent contribution of these approaches to knowledge production in this research topic. Design and method A total of 23 articles, of which 18 narrative studies and five discursive studies, were identified (...) in a systematic literature search. We used the meta-study method to analyse these studies in terms of basic assumptions, methodologies, and findings. Results Early narrative studies focused on biographical disruption in career termination and/or severe injury, whereas more recent studies examined the impact of different identity narratives on athletes' well-being and career decisions. Discursive studies examined the multiple ways in which dominant understandings of gender, age, and the athletic body are (re)produced and normalised within sporting cultures and institutions and can act to constrain athletes to certain identities and practices. Both approaches highlighted that elite sport culture offers limited narrative resources or subject positions for athletes, and can endanger athletes' well-being if they are unable to comply with dominant ideals of being an athlete. Conclusions Narrative and discursive approaches have advanced understandings of the constitutive role of sporting culture in athletic identity formation. Future research should continue exploring athletic identity in various physical cultural contexts and seek to identify alternative narratives and discourses that may enable athletes to construct more adaptive identities. (shrink)

This essay examines a challenge to common literary representations of female mental illness in the Early Modern period—the hysterical woman—in a collection of French short stories contemporary to Vesalius's De Fabrica: Jeanne Flore's Tales and Trials of Love. Jeanne Flore's tales depict several mentally disturbed female protagonists, young women prone to paroxysms of madness and self-mutilation. This study maintains that while Tales and Trials of Love superficially participates in the literary tradition that grew out of those accepted social and medical (...) beliefs, it also questions the long-accepted paradigm of female hysteria and points to a shift in the socio-medical climate. Jeanne Flore's fictional narratives suggest that mental illness no longer consists in the realignment of a uterine imbalance, but rather in the telling of personal stories, a precursor to psychoanalysis and narrative medicine. (shrink)

Critiques of the dehumanising aspects of contemporary medical practice have generated increasing interest in the ways in which health care can foster a holistic sense of wellbeing. We examine the relationship between two areas of this humanistic endeavour: narrative and dignity. This paper makes two simple arguments that are intuitive but have not yet been explored in detail: that narrative competence of carers is required for maintaining or recreating dignity, and that dignity promotion in health care practice is primarily narrative (...) in form. The multiple meanings that dignity has in a person’s life are what give the concept power and can only be captured by narrative. This has implications for health care practice where narrative work will be increasingly required to support patient dignity in under-resourced and over-subscribed health care systems. (shrink)

Persons with profound intellectual and multiple disabilities cannot speak about their Quality of Life, which makes it necessary to involve others. In current approaches, these ‘others’ are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers’ knowledge on the QoL of a person with PIMD a theoretical basis that values (...) these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers’ experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. (shrink)

Patient ambivalence is a little studied phenomenon. Therefore, the contribution of Moore et al. (2022) about patient ambivalence in medical decision-making is welcome. Also, the idea that ambivalen...

The American Journal of Bioethics, Volume 12, Issue 9, Page 53-55, September 2012.

The varieties of meaning in which we use the terms illness and health requires that we develope a conceptualization allowing us to maintain a unity between the differences. In fact, the experiences of health and illness are complex ones and they need to be understood in their different levels so that the need for help of patients and their desire for health is adequately faced. At its roots, the experience of illness is that of a threat posed to the unreflective (...) credit given to life in good health. This threat has not only a biopsychosocial dimension, but a moral and sybolic one as well, and it is mainly at this level that illness represents a moral challenge. Contemporary culture seems to be at pains in suggesting a shared set of meanings enabling the patient to give an intersubjectively valid sense of illness, since the only kind of answer offered is a technical one. The symbolic dimension of the notions of health and illness call for a deeper cultural enterprise of looking for a credible sense of illness for our times. (shrink)

Physicians often express frustration with the ‘system’ in which they work. Over time, this frustration may put them at risk of burnout and disengagement, which may impact patient care. In this study, we aimed to understand the nature of the system flaws that physicians identified in their published narratives and to explore their self-representation as agents of change. We reviewed all reflective narratives published in four medical journals between January 2015 and December 2017. By consensus, we identified those that addressed (...) system flaws. Using content and narrative analysis, we analyzed the types of flaws and the physicians’ orientation to the flawed system. We identified seven recurring system flaws—five related to medical culture: failures of communication, erosive impact of the hidden curriculum, inadequate health advocacy, frenzied pace of work, and experience of stigma. Less frequently, physicians’ narratives also exposed limited and disparate healthcare resources and restrictive institutional practices as impeding patient-centered care. Physicians expressed agency to create change foremost when writing about flaws related to medical culture. While physicians are challenged by system flaws, they strive to practice in ways that do not succumb to them. We saw tension between the elements outside the physician’s control and those within it. This tension becomes a source of distress when the compromises that emerge from system flaws move physicians away from the values that define their professional identity. (shrink)

Der Artikel spürt den subtilen Veränderungen nach, die bei Patienten, die mit tiefer Hirnstimulation behandelt werden, möglicherweise beobachtet werden können. Dabei sollen im Rückgriff auf Konzeptionen zur narrativen Identität mittels einer möglichst genauen Beschreibung und Analyse der Selbstwahrnehmung der Patienten sowie der Wahrnehmung ihres Umfelds die Änderungen im praktischen Selbstverhältnis untersucht werden, u. a. am Beispiel technomorpher Metaphern, die von den Patienten in ihren Selbstbeschreibungen verwendet werden. Ziel ist es, die Neuartigkeit und das Spezifische der Neurotechnologien – über die bisherigen (...) Untersuchungen hinaus – hinsichtlich des Umgangs mit sich selbst herauszuarbeiten und greifbar zu machen. Abschließend werden auf Basis der Analyse der Patienten-Narrationen die entsprechenden normativen Implikationen für eine ethische Bewertung des Einsatzes von Neurotechnologien benannt. (shrink)

Der Artikel spürt den subtilen Veränderungen nach, die bei Patienten, die mit tiefer Hirnstimulation behandelt werden, möglicherweise beobachtet werden können. Dabei sollen im Rückgriff auf Konzeptionen zur narrativen Identität mittels einer möglichst genauen Beschreibung und Analyse der Selbstwahrnehmung der Patienten sowie der Wahrnehmung ihres Umfelds die Änderungen im praktischen Selbstverhältnis untersucht werden, u. a. am Beispiel technomorpher Metaphern, die von den Patienten in ihren Selbstbeschreibungen verwendet werden. Ziel ist es, die Neuartigkeit und das Spezifische der Neurotechnologien – über die bisherigen (...) Untersuchungen hinaus – hinsichtlich des Umgangs mit sich selbst herauszuarbeiten und greifbar zu machen. Abschließend werden auf Basis der Analyse der Patienten-Narrationen die entsprechenden normativen Implikationen für eine ethische Bewertung des Einsatzes von Neurotechnologien benannt. (shrink)

Contemporary sociology mirrors Western society in its general aversion and sensitivity to pain, and in its view of pain as an unproductive threat to cultures and identities. This highlights the deconstructive capacities of pain, and marginalizes collectively authorized practices that embrace it as constitutive of cultural meanings and social relationships. After exploring the particularity of this Western orientation to pain — by situating it against processes of instrumentalization and medicalization, and within a broader context of other social developments conducive to (...) a heightening of affect control — this article builds on Mauss’s analysis of ‘body techniques’ in suggesting that the cultural, physiological and psychological dimensions of pain can be combined in various ways. In examining this point further, we then compare contrasting religious engagements with pain as a way of detailing how it can be positively productive of cultural meanings and identities, and conclude by using these comparisons to illuminate the relationship between the current Western approach to pain and the Christian traditions that shaped the West historically. (shrink)

The attempt to arrive at some consensus on precisely what qualifies a human as a person represents one of the more persistently debated and widely significant issues in modern biomedical ethics. The attribution of personhood has been and continues to be a powerful tool in moral discourse. Biomedical and bioethical debates about personhood seem especially morally significant in late modernity given the recent trends in biomedical technology. Our attempts to formally articulate universally agreed upon criteria for personhood represent some of (...) the last vestiges of the hope that we can achieve substantial moral agreement in an otherwise morally fragmented world. In this essay, we argue that, from the perspective of certain strands of the Christian tradition, all bioethics grounded in attempts to develop formal, objective criteria by which we may designate a given individual a person are misguided. Criteria centering on the possession of reflective mental capacity, moreover, are for Christians especially problematic. We suggest that there are no morally neutral ways of designating personhood. (shrink)

This article examines the temporality of organ transplantation with a focus on memoirs where the recipient has received an organ from a deceased donor. I argue that death constitutes life. That is, this absent presence – that the organ is materially present but the person is dead and therefore absent – is the foundation for rethinking relationality as constituted through the haunting presence of those who remain central to the continuity of life but who are not alive in any strict (...) definition of the term. This article is therefore attentive to the various meanings of haunting, drawing on queer theory to show how narratives of haunting are derealised experiences and thus a struggle for epistemological authority over specifically transplantation and relationality more broadly. It draws out how these epistemological challenges reimagine ontology as a haunted experience, and thus an intimate tie between the living and the unknown – and somewhat present – dead. (shrink)

The positive functions of psychosis are examined. It is concluded that psychosis might have following positive and compensating functions: satisfaction of urgent needs that otherwise would remain unsatisfied; avoidance of and coping with unbearable reality, harmful influences and stress, and/or trauma; realization of urgent but otherwise unattainable goal settings; and upgrading of social-emotional and cognitive incapacities into more adequate social-emotional and cognitive awareness and functioning. The therapeutic implications of these findings are also discussed.

: Although philosophers often focus on the essays of Leopold's Sand County Almanac, especially "The Land Ethic," there is also a normative argument present in the stories that comprise most of the book. In fact the shack stories may be more persuasive, with a subtlety and complexity not available in his prose piece. This paper develops a narrative ethics methodology gleaned from rhetoric theory, and current interest in narrative ethics among literary theorists, in order to discern the normative underpinnings of (...) the stories in Part 1. The narrative ethics approach sidesteps the need to ground the land ethic in ethical theory—which has been a reconstructive and problematic task for the philosophical interpreters of Leopold—and suggests, instead, that it emerges in Leopold's very effort to narrate his, professional, personal, and practical experience with nature. The involves examining the stories in terms of their emotional, logical and performative aspects. The result is an analysis that shows not only how these stories express normative claims, but also justify them. One conclusion of the analyses is that, in the narratives, there is less emphasis on the problematic notion of an over-arching "community" than in the prose pieces, and more emphasis on the metaphor of other living things as "fellow travelers" in the "odyssey of evolution." Second, the narratives take on an ironic attitude toward the ecological order, less discernable in the prose essays. The order itself may not be ethically admirable, but should be preserved since it makes possible any ethical relations within it. Thus, the narrative reading suggests some temperance to the usual holistic interpretation of his land ethic and its concomitant criticisms especially the charge of ecofacism. We should not take the land ethic imperative at its face value, in the sense that the good of the order itself is an intrinsic good. In the narratives, individuals are shown not merely to be means to the ecological whole, but the focus of sympathy and concern, in a manner that demands their good should also be an object of moral consideration. (shrink)

This paper is a report on aconversation held between the authors andcentered on their shared interest inalternative methods of inquiry and evaluationin agriculture. The conversation was initiatedat the W. K. Kellogg Foundation and has evolvedthrough a series of long distanceconversations. Though not a verbatim transcriptof our conversations, this paper represents acomposite of both the face-to-face conversationand our stream of dialogue over the past year.Central to our discussion is an exploration ofthe parallels between the paradigm shift thatoccurred in evaluation in the (...) early 1980s andthe current agricultural paradigm shift beingpromoted by the W. K. Kellogg Foundation. Inthe course of this conversational paper, wesuggest not only that evaluators andresearchers should cultivate their capacity tohear and tell stories, but also thatagricultural programs and their long-termimpacts could benefit from different kinds ofevaluation efforts. From this perspective, theevaluation or research report is no longer anattempt to mirror reality, but rather it is anevocative story that asks the reader to engagethe storyline morally, emotionally,aesthetically, and intellectually, as well asfrom a social impact perspective. It is ourhope that this paper will serve as what Lather(1993) has called an ``incitement to discourse''in the disciplinary fields of agriculture andevaluation. (shrink)

The research presented in this work represents reflections in the light of Julia Kristeva's philosophy concerning empirical data drawn from research describing the everyday life of people dependent on ventilators. It also presents a qualitative and narrative methodological approach from a person‐centred perspective. Most research on home ventilator treatment is biomedical. There are a few published studies describing the situation of people living at home on a ventilator but no previous publications have used the thoughts in Kristeva's philosophy applied to (...) this topic from a caring science perspective. The paper also addresses what a life at home on a ventilator may be like and will hopefully add some new aspects to the discussion of philosophical issues in nursing and the very essence of care. Kristeva's philosophy embraces phenomena such as language, abjection, body, and love, allowing her writings to make a fruitful contribution to nursing philosophy in that they strengthen, expand, and deepen a caring perspective. Moreover, her writings about revolt having the power to create hope add an interesting aspect to the work of earlier philosophers and nursing theorists. (shrink)

Since the Vietnam War, graphic novels about war have shifted from simply representing it to portraying avenues for survivors to establish psychological wellness in their lives following traumatic events. While modern diagnostic medicine often looks to science, technology, and medications to treat the psychosomatic damage produced by trauma, my article examines the therapeutic potential of the comics medium with close attention to war comics. Graphic novels draw trauma in a different light: because of the medium’s particular combination of words and (...) images in sequence, war comics represent that which is typically unrepresentable, and these books serve as useful tools to promote healing among the psychologically wounded. Graphic narratives, both fictional and non-fictional, illuminate the ways that the unseen wounds of traumatic experience affect public health by compromising the ability of communities, individuals, and survivors to create and maintain meaningful relationships with others. (shrink)

Being diagnosed with cancer can be one of those critical incidents that negatively affect the self. Identity is threatened when physical, psychological, and social consequences of chronic illness begin to erode one’s sense of self and challenge an individual’s ability to continue to present the self he or she prefers to present to others. Based on the notion of illness trajectory and adopting a Ricoeurian narrative perspective, this theoretical paper shall explore the impact of cancer disease on identity and establish (...) the crucial importance of metaphor in the narratives of life with cancer. Findings indicate that in cancer narratives the illness experience supplies the narrative structure with temporal and spatial meeting points that make the narrative comprehensible and meaningful. Cancer forces identity changes not only from having to endure the long-term physical and psychosocial effects of the disease, but also from inevitable existential questions about life’s meaning. Improved medical knowledge today means improved ethnomedical practices. Metaphor can bridge the gap between the cancer experience and the world of technology and treatment, helping patients to symbolically control their illness. (shrink)

Phenomenology in medicine’s main contribution is to present a first-person narrative of illness, in an effort to aid medicine in reaching an accurate disease diagnosis and establishing a personal relationship with patients whose lived experience changes dramatically when severe disease and disabling condition is confirmed. Once disease is diagnosed, the lived experience of illness is reconstructed into a living-with-disease narrative that medicine’s biological approach has widely neglected. Key concepts like health, sickness, illness, disease and the clinical encounter are being diversely (...) and ambiguously used, leading to distortions in socio-medical practices such as medicalization, pharmaceuticalization, emphasis on surveillance medicine. Current definitions of these concepts as employed in phenomenology of medicine are revised, concluding that more stringent semantics ought to reinforce an empirical phenomenological or postphenomenological approach. (shrink)

This project explores vaccine hesitancy through an artist–scientist collaboration. It aims to create better understanding of vaccine hesitant parents’ health beliefs and how these influence their vaccine-critical decisions. The project interviews vaccine-hesitant parents in the Netherlands and Finland and develops experimental visual-narrative means to analyse the interview data. Vaccine-hesitant parents’ health beliefs are, in this study, expressed through stories, and they are paralleled with so-called illness narratives. The study explores the following four main health beliefs originating from the parents’ interviews: (...) perceived benefits of illness, belief in the body’s intelligence and self-healing capacity, beliefs about the “inside–outside” flow of substances in the body, and view of death as a natural part of life. These beliefs are interpreted through arts-based diagrammatic representations. These diagrams, merging multiple aspects of the parents’ narratives, are subsequently used in a collaborative meaning-making dialogue between the artist and the scientist. The resulting dialogue contrasts the health beliefs behind vaccine hesitancy with scientific knowledge, as well as the authors’ personal, and differing, attitudes toward these. (shrink)

To address the moral questions in patient care and medical practice, Danish hospitals are starting to solicit clinical ethics committees. As in other places around the world, CECs in Denmark is an interdisciplinary group that includes physicians, nurses, social workers, psychologists, lawyers, chaplains, and sometimes lay persons. Due to their distinct professional background, members are largely untrained in concepts, skills and the language of moral philosophy and ethical reasoning. The absence of appropriate competencies makes it challenging for members to identify, (...) analyze and resolve lingering moral quandaries. Thus, the creation of CECs in Denmark has raised the question of qualifications for those who serve on a committee. When the Danish Society of Clinical Ethics was formed in 2012, it was therefore at the forefront of its agenda to establish a training program that would offer valuable contributions to the ethical aspect of medical decision making and to serve as an important resource for health care providers, patients and their families. This article describes the history, development and preliminary results of the current training program as well as reflects on future ideas for ethics education for Danish CECs and health care providers at large. (shrink)

This article examines the storytelling aspect in philosophizing with rehabilitating cancer patients in small Socratic dialogue groups. Recounting an experience to illustrate a philosophical question chosen by the participants is the traditional point of departure for the dialogical exchange. However, narrating is much more than a beginning point or the skeletal framework of events and it deserves more scholarly attention than hitherto given. Storytelling pervades the whole Socratic process and impacts the conceptual analysis in a SDG. In this article we (...) show how the narrative aspect became a rich resource for the compassionate bond between participants and how their stories cultivated the abstract reflection in the group. In addition, the aim of the article is to reveal the different layers in the performance of storytelling, or of authoring experience. By picking, poking and dissecting an experience through a collaborative effort, most participants had their initial experience existentially refined and the chosen concept of which the experience served as an illustration transformed into a moral compass to be used in self-orientation post cancer. (shrink)

The secret worlds of life experience, culture, sexuality and emotions are often expressed through physical “symptoms”. The lived body becomes the entry point for professionals to enter the world of the patient. This article, arising out of a study of the experiences of Greek women at menopause, discusses the story of one woman and interprets the cultural and emotional inscriptions that are carried into the clinical setting. It illustrates the multiple layers of corporeal meaning engendered by menopause and the clinical (...) interactions surrounding it. It argues that the bodies that present themselves for consultation and examination are phenomenological memoirs of suffering, struggle and illness. Even in its most technical aspects medical practice cannot ignore the philosophies, values, goals and cultural experiences of those who seek its assistance. (shrink)

Although philosophers often focus on the essays of Leopold's Sand County Almanac, especially "The Land Ethic," there is also a normative argument present in the stories that comprise most of the book. In fact the shack stories may be more persuasive, with a subtlety and complexity not available in his prose piece. This paper develops a narrative ethics methodology gleaned from rhetoric theory, and current interest in narrative ethics among literary theorists, in order to discern the normative underpinnings of the (...) stories in Part 1. The narrative ethics approach sidesteps the need to ground the land ethic in ethical theory—which has been a reconstructive and problematic task for the philosophical interpreters of Leopold—and suggests, instead, that it emerges in Leopold's very effort to narrate his, professional, personal, and practical experience with nature. The involves examining the stories in terms of their emotional, logical and performative aspects. The result is an analysis that shows not only how these stories express normative claims, but also justify them. One conclusion of the analyses is that, in the narratives, there is less emphasis on the problematic notion of an over-arching "community" than in the prose pieces, and more emphasis on the metaphor of other living things as "fellow travelers" in the "odyssey of evolution." Second, the narratives take on an ironic attitude toward the ecological order, less discernable in the prose essays. The order itself may not be ethically admirable, but should be preserved since it makes possible any ethical relations within it. Thus, the narrative reading suggests some temperance to the usual holistic interpretation of his land ethic and its concomitant criticisms especially the charge of ecofacism. We should not take the land ethic imperative at its face value, in the sense that the good of the order itself is an intrinsic good. In the narratives, individuals are shown not merely to be means to the ecological whole, but the focus of sympathy and concern, in a manner that demands their good should also be an object of moral consideration. (shrink)

The paper presents a new seven-step methodology for using narrative ethics and two case studies illustrating its application. A brief discussion of the importance of ethics to engineers and the need to consider outcomes and macroethics introduce the paper. This is followed by overviews of the literature on narrative ethics, the ethics of care, and virtue ethics and moral exemplars. The ethics of care and virtue ethics are included due to their relationship to narrative and the fact they are probably (...) less known to many engineers than other types of ethical theories. The paper also considers the important issues of culture, diversity and the ‘other’ and the need for support and collective responsibility. Understanding diversity and the ‘other’ are very important for engineers for a number of reasons, including the need to design technologies, goods and services for people who are not engineers and who are also different from them on other characteristics, such as gender, race and disability. Although ethical behaviour is often portrayed as an individual responsibility, it is much easier to behave ethically in a context which supports and encourages ethical behaviour. Collective action is frequently more effective than individual action and can prevent victimisation. (shrink)

Many of those teaching at the intersection of medicine and the humanities are siloed within institutional spaces. This essay recounts the teaching of Sarah Manguso’s The Two Kinds of Decay to students across different academic contexts and considers what we can learn when we put classrooms in conversation with each other. This essay argues for the value of texts like Manguso’s, which explicitly hold the narrating subject and form of illness narrative up for critical examination. The authors call for more (...) collaborative teaching, which has special resonance in the health humanities, where conversations already depend on bridging disciplines and listening to the stories others can tell. (shrink)

Norway’s living kidney donation-rate is among the highest in the world ( 36 per million ). According to questionnaire-results, donors enjoy better than average health, presumably due to the strict medical criteria for being allowed to donate and life long medical follow up. However, in recent years international studies have cast doubt on the predominantly positive picture of donors and recipients, particularly regarding psychological aspects of transplantation surgery and donor evalutation. Findings in this study derive from anthropological fieldwork lasting 36 (...) months at three university hospitals in the Oslo-basin. 18 end stage kidney disease patients and their potential donors were recruited opportunistically and interviewed (separately) in three or more semi-structured conversations during the evaluation process and after transplantation. 3 cases are discussed in detail. Notes were transcribed and analysed according to narrative theory. Focus was to explore the content of donors’ and recipients’ pre- and post-transplantation narratives and to examine whether these accounts warrant a need for more comprehensive psychological assessment than is current practice in Norway. Donor- and recipient-narratives are well suited as a tool to improve living kidney donation-decisions. The material indicates a need to offer psychological care to LKD-partners, before and after transplantation. (shrink)

Some employ neurological theories of empathy to train medical students and to explain why care work is emotionally exhausting. I argue, however, that these theories develop conceptual and methodological confusion that creates a reductive and misdirected focus in patient-centered care. Neurological theories on empathy do not help us understand patient-centered care, nor do they help us understand why care work can be exhausting. By discussing examples of care work, I argue that empathic attentiveness to patients is a dialogical ethical response (...) to the whole person and takes place in daily care settings of working, helping, and responding to each other. (shrink)

This essay uses Solzhenitsyn’s Cancer Ward to explore the exilic effects of illness and pain. The novel is uniquely suited for such an analysis given the theme of exile that predominates both in the narrative and in the composition of multiple characters within that narrative. I argue that illness, and in particular pain, is a liminal state, an existential hinterlands. The ethical approach to literature and medicine may suggest, as a response to these exilic effects, the need to cultivate connection (...) and empathy by sharpening the moral imagination. If pain and illness exile the sufferer, the imperative to reach out takes on ethical content. (shrink)

Tōjisha research is a methodology intended to help psychiatric patients through dialogue. It was introduced in the context of community care in Bethel House (Hokkaido, Japan) in the early 2000s and later spread to other parts of Japan as well as abroad because of its originality and apparent therapeutic success. It offers patients a framework to investigate their own problems, symptoms, and delusions and to build a discourse around them. In this paper, I present a short account of tōjisha research (...) and I put it in the context of current debates over the benefits and drawbacks of narrative medicine. I argue that there is an original conception of the self and of empowerment of patients in tōjisha research compared to other models of narrative medicine. Finally, I mobilize these original aspects to address some rebuttals of narrative medicine. (shrink)