Socially extended knowledge has recently received much attention in mainstream epistemology. Knowledge here is not to be understood as wholly realised within a single individual who manipulates artefacts or tools but as collaboratively realised across plural agents. Because of its focus on the interpersonal dimension, socially extended epistemology appears to be a promising approach for investigating the deeply social nature of epistemic practices. I believe, however, that this line of inquiry could be made more fruitful if it is connected with (...) the critical notion of epistemic responsibility, as developed in feminist responsibilism. According to feminist responsibilists, at the core of epistemic responsibility is a critical disposition toward correcting epistemic injustice. This epistemic idea is highly relevant to the epistemological context of illness, where patient testimony is often disregarded. Hence, though restricted to the epistemological context of the experience of illness, this chapter delves into epistemic injustice and its robust mechanisms. I thus explore what responsible epistemic practices should involve in order to redress that injustice and how epistemic responsibility should be socially extended. The discussion proceeds as follows. First, by relying on Arthur Frank’s innovative work on illness narratives, I focus on chaotic bodily messages from patients overwhelmed by suffering and then explain why these messages should count as genuine narratives or testimonies despite their inarticulateness. Second, I elaborate on how epistemic injustice concerning such narratives (i.e., chaos narratives) is produced and reproduced, in particular how both a dominant sociocultural norm and our inherent vulnerability can contribute to its production and reproduction. Finally, I propose an extended form of epistemic responsibility that ameliorates this aspect. Laying particular emphasis on the epistemic role of mature empathy, I characterise the extended epistemic responsibility in terms of extended empathic knowledge. (shrink)

Illness narratives convey a person’s feelings, thoughts, beliefs, and descriptions of suffering and healing as a result of physical or mental breakdown. Recognized genres include fiction, nonfiction, poetry, plays, and films. Like poets and playwrights, musicians also use their life experiences as fodder for their art. However, illness narratives as expressed through popular music are an understudied and underutilized source of insights into the experience of suffering, healing, and coping with illness, disease, and death. Greater attention to (...) the value of music within medical education is needed to improve students’ perspective-taking and communication. Like reading a good book, songs that resonate with listeners speak to shared experiences or invite them into a universe of possibilities that they had not yet imagined. In this article, we show how uncovering these themes in popular music might be integrated into medical education, thus creating a space for reflection on the nature and meaning of illness and the fragility of the human condition. We describe three kinds of illness narratives that may be found in popular music (autobiographical, biographical, and metaphorical) and show how developing skills of close listening through exposure to these narrative forms can improve patient-physician communication and expand students’ moral imaginations. (shrink)

Many people report that reading first-person narratives of the experience of illness can be morally instructive or educative. But although they are ubiquitous and typically sincere, the precise nature of such educative experiences is puzzling—for those narratives typically lack the features that modern philosophers regard as constitutive of moral reason. I argue that such puzzlement should disappear, and the morally educative power of illness narratives explained, if one distinguishes two different styles of moral reason: an inferentialist style that (...) generates the puzzlement and an alternative exemplarist style that offers a compelling explanation of the morally educative power of pathographic literature. (shrink)

Engaging in self-narrative is often touted as a powerful antidote to the bad effects of illness. However, there are various examples of what may broadly be termed “aversion” to illness narrative. I group these into three kinds: aversion to certain types of illness narrative; aversion to illness narrative as a whole; and aversion to illness narrative as an essentially therapeutic endeavor. These aversions can throw into doubt the advantages claimed for (...) the illness narrator, including the key benefits of repair to the damage illness does to identity and life-trajectory. Underlying these alleged benefits are two key presuppositions: that it is the whole of one’s life that is narratively unified, and that one’s identity is inextricably bound up with narrative. By letting go of these assumptions, illness narrative advocates can respond to the challenges of narrative aversions. (shrink)

This paper provides a brief overview and critique of the dominant objectivist understanding and use of illness narrative in Enlightenment (scientific) medicine and ethics, as well as several revisionist accounts, which reflect the evolution of this approach. In light of certain limitations and difficulties endemic in the objectivist understanding of illness narrative, an alternative phronesis approach to medical ethics influenced by Charles Taylor’s account of the interpretive nature of human agency and language is examined. To this (...) end, the account of interpretive medical responsibility previously described by Schultz and Carnevale as "clinical phronesis" (based upon Taylor’s notion of "strong" or "radical evaluation") is reviewed and expanded. The thesis of this paper is that illness narrative has the ability to benefit patients as well as the potential to cause harm or iatrogenic effects. This benefit or harm is contingent upon how the story is told and understood. Consequently, these tales are not simply "nice stories," cathartic gestures, or mere supplements to scientific procedures and decision making, as suggested by the objectivist approach. Rather, they open the agent to meanings that provide a context for explanation and evaluation of illness episodes and therapeutic activities. This understanding provides indicators (guides) for right action. Hence, medical responsibility as clinical phronesis involves, first, the patient and provider’s coformulation and cointerpretation of what is going on in the patient’s illness narrative, and second, the patient and provider’s response to interpretation of the facts of illness and what they signify–not simply a response to the brute facts of illness, alone. The appeal to medical responsibility as clinical phronesis thus underscores the importance of getting the patient’s story of illness right. It is anticipated that further elaboration concerning the idea of clinical phronesis as interpretive illness narrative will provide a new foundation for medical ethics and decision making. (shrink)

Illness narrative has often been found to play a positive role in both patients’ and providers’ efforts to find meaning in the illness experience. However, illness narrative can sometimes become counterproductive, even pathological, particularly in cases of medical mystery—cases wherein biopsychosocial factors blur the distinction between bodily dysfunction and somatizing behavior. In this article, the author draws attention to two examples of medical mystery, the clinical presentation of medically unexplained symptoms, and the popular reality television (...) program Mystery Diagnosis, to demonstrate the potentially harmful effects of illness narrative. The medical mystery’s complex narrative structure reflects and tends to reinforce providers’ and patients’ mistaken assumptions, anxieties, and conflicts in ways which obstruct, rather than facilitate, healing. (shrink)

Using the phenomenological perspective provided by the concept of embodiment, this article shows that in Cuenca, Ecuador, knowledge about the body is fluid and during illness women can seek reassurance and explanations from multiple knowledge systems, including locally understood subordinate ones. Employing the concept of `character', as described by Ricoeur, as an explanation for why some women are more vulnerable to illness than others, the author argues that gender ideologies and notions of self-identity intersect in Ecuadorian conceptions of (...) weakness and illness. Women's narrative descriptions of themselves and their experiences with envy illness (envidia) indicate that the experience of illness is an extremely powerful one and that women's interpretations of it cross typical social class divisions. Embodied illness creates a place and moment for revealing that which is often hidden. (shrink)

In a compelling and provocative paper, ‘Solving the Self-Illness Ambiguity: The Case for Construction Over Discovery,’ Sofia M.I. Jeppsson distinguishes two ways of addressing the self-illness ambiguty problem. The first is the Realist Solution, which postulates a pre-existing border between the self and the illness and frames the goal of treatment in psychiatry as helping the patient ‘discover’ this boundary. Addressing the shortcomings of the Realist Solution, both in terms of its feasibility and possible outcomes, Jeppsson proposes (...) and defends the Constructivist Solution, according to which the patient, through self-reflection and deliberation with others, including the clinicians, decides, which parts of her experiences they identify with themselves and which parts they attribute to their illness. This paper critically evaluates Jeppson’s arguments and addresses some of the shortcomings of Jeppsson’s positive argument, i.e. the Constructivist Solution. (shrink)

A number of studies show that when doctors become ill, there is often ambiguity in the division of roles and responsibilities in the medical encounter. Yet little is known about how the dilemma of the sick doctor has changed over time. This article explores the experience of illness among physicians by applying an historical, narratological approach to three doctor’s narratives about personal cases of cardiac disease: Max Pinner’s from the 1940s, Robert Seaver’s from the 1980s, and John Mulligan’s from (...) 2015. Drawing on Erving Goffman’s principles of social interaction, I argue that part of the challenge in the analysed narratives is because when doctors seek medical attention for themselves, the ensuing medical ‘drama’ suffers. I compare the three narratives to argue that the experience of becoming a patient while simultaneously remaining a doctor is a challenge that has changed over time. In Pinner’s narrative, the patient identity is both undesirable and inaccessible; in Seaver’s, role ambivalence between doctor and patient is the most salient feature; for Mulligan, his personal rather than professional experience of illness is the overarching theme of the narrative. Finally, I suggest that an awareness of how the medical drama often changes when doctors are patients might prove beneficial both for the doctor-patients and providers of medical care. (shrink)

The dominant discourse on dementia promotes a view that as individuals progress with the disease, they experience a neurological decline causing a loss of self. This notion, grounded in a Cartesian representation of selfhood, associates a loss of self as directly related to cognition. This paper presents an alternative anthropological framework, embodied selfhood, that challenges this representation. It then examines a potential tool, graphic medicine, to translate this theory into caregiving practice. Through analyzing three graphic novels—Wrinkles, Tangles, and Aliceheimer’s—this paper (...) demonstrates how tension exists between different conceptions of selfhood and associated implications for caregivers and patients alike. (shrink)

This essay recognizes that the interactions that define medical care are problematic and that narrative is invoked to overcome these strains. Being grounded in science, medicine, too, might be influenced by a particular world-view that arose in the natural philosophy of the Scientific Revolution. If narrative responds to this sort of medicine, it may retain traces of this mindset. A feminist approach responds to this viewpoint and may used beneficially to analyze both the story of medicine and the (...) stories within medicine. Tensions discussed from this perspective are those between sickness and health and those between patient and provider; also questioned are suitable form(s) of narrative and whose narratives are valued. Suggestions for broadening narrative to address these issues include letting the body speak for itself, overcoming the power differential in the patient/provider interaction and using standpoints to foster a more equal and just medical system. (shrink)

This book exploits the power of phenomenological methods to access and describe lived moral experiences of pain and suffering for patients, their families and the wider community. Creating new fields of communication for patients, their family members and health professionals in shared decision making processes, this book builds on knowledge about suffering to help and guide correct action in preventing and relieving chronic pain and improving systems of care. It offers a new phenomenology for understanding moral experience in serious (...) class='Hi'>illness and suffering, and its implication for policy, practice and research. A series of applied chapters, looking at individual experiences of suffering and care experiences, present some areas of ethical inquiry, including: pain and suffering maternal care ethics evaluation and moral deliberation about treatment options decision-making and moral agency end-of-life experiences of care. Exploring how moral phenomenology could provide fruitful alternatives to traditional frameworks in bioethics, this is an important addition to the literature. It will be of interest to scholars and students of bioethics and phenomenological methods in the health and human services. (shrink)

Awareness of illness in schizophrenia reflects complex storied understanding of the impact of the disorder upon one’s life. Individuals may be aware of their illness in different ways and this may be related to their functioning. A total of 76 adults with schizophrenia were assessed for their awareness of illness, neurocognition, social cognition, and social function concurrently and social function was also assessed at three later time points. A cluster analysis revealed 3 groups: generally full awareness, generally (...) limited awareness, and superficial awareness. Comparisons between these profiles revealed the superficial group had poorer executive function, emotion recognition ability, and capacity for social relationships than the full awareness group, yet had better verbal memory and more social contacts than the limited awareness group. These results suggest assessing the narrative qualities of awareness of illness may reveal unique links with cognition and function, and this may have implications for interventions. (shrink)

ABSTRACTIn the last decades, narrative theory has collaborated with sociology and anthropology of health to account for the importance that illness narratives hold for those who are or have been si...

The distinction that De Haan and Korsten foreground in their valuable commentary between, on the one hand, medical files, and, on the other, illness records is very helpful, as it underlines that illness narratives are not bound to a specific truth regime. They operate in, and at times even across, a variety of truth regimes, within which their status and function can radically differ. In that light, De Haan and Korsten have a point when they state that “any (...) patient’s experience” “exceed[s] the domain of the medical proper”. Quoting from my contribution, they go on to... (shrink)

This paper explores Nietzsche’s approach to the question of illness. It develops an account of Nietzsche’s ideas in the wake of Arthur W. Frank’s discussion of the shortcomings of modern medicine and narrative theory. Nietzsche’s approach to illness is then explored in the context of On the Genealogy of Morality and his conception of the human being as “the sick animal”. This account, it is argued, allows for Nietzsche to develop a conception of suffering that refuses to (...) reduce it to modernist restitutive conceptions of well-being. Instead, Nietzsche advocates a more nuanced conception of varying degrees of health. This, it is argued, can be developed into a model that allows for a more satisfying conception of the relation between medical practitioner and patient. (shrink)

This paper explores Nietzsche’s approach to the question of illness. It develops an account of Nietzsche’s ideas in the wake of Arthur W. Frank’s discussion of the shortcomings of modern medicine and narrative theory. Nietzsche’s approach to illness is then explored in the context of On the Genealogy of Morality and his conception of the human being as “the sick animal”. This account, it is argued, allows for Nietzsche to develop a conception of suffering that refuses to (...) reduce it to modernist restitutive conceptions of well-being. Instead, Nietzsche advocates a more nuanced conception of varying degrees of health. This, it is argued, can be developed into a model that allows for a more satisfying conception of the relation between medical practitioner and patient. (shrink)

This creative-critical piece reflects on the practices of recording, communicating, and caring that took place on social media and in digital spaces during the COVID-19 pandemic. Using my own experience of contracting COVID-19 as a starting point, the piece looks at the ways in which epidemics have often been recorded in collaborative ways, with the personal, professional, and familial converging in historical texts that could be used as sources of medical authority. COVID-19 has similarly been immortalized across a variety of (...) forms and by different communities. The piece particularly explores the ways in which collective epidemic experience has been represented online through autopathographical Tweets, TikTok cures, and group chat messages and the future purposes that such collaborative patient narratives can serve. (shrink)

The experience of illness raises profound issues concerning the sense or non-sense of human existence as a whole: does life have meaning when it is marked by suffering? And what meaning would it bear, in this case? These questions are asked by both caregivers and recipients of care when they come into contact with limits, pain, and death. In this regard, the existential condition of homo patiens is ambiguous: it can lead either to nihilism and despair or to a (...) higher level of awareness and responsibility. Studies on resilience, post-traumatic growth, and meaning-making processes seem to suggest that in difficult situations the search for meaning comes most clearly to the fore, so that the possibility of finding meaning in life can be a protective factor and a key therapeutic resource, while meaninglessness increases weakness and vulnerability. But what is meant by “meaning” in the illness experience and how may it be integrated into one’s personal life story? This question is answered here in terms of narrative methods that can enhance healthcare practitioners’ capacity to approach their patients with sensitivity and deep understanding and guide them to find meaning in their lives, despite all. (shrink)

This paper examines recovery from a narrative perspective. Narrativity theory is the view that life takes the form of a story. Human experience happens within an ongoing storyline. My aim here is not to indulge in disclosure or claim that I developed otherwise unattainable insight through the course of my illness. We will instead be looking at how the process of recovery brings on opportunities for moral understanding in the form of insights into the nature of suffering, increased (...) sensitivity to what is going around you, and appreciation of how certain things can affect the whole of life. (shrink)

Although the concept of self-illness ambiguity is relatively new, the phenomenon is not. It seems likely that people have struggled with the oftentimes ambiguous relation between themselves and the...

I introduce the concept pathophobia, to capture the range of morally objectionable forms of treatment to which somatically ill persons are subjected. After distinguishing this concept from sanism and ableism, I argue that the moral wrongs of pathophobia are best analysed using a framework of vice ethics. To that end I describe five clusters of pathophobic vices and failings, illustrating each with examples from three influential illness narratives.

This conversational opinion article between two parties – Kate, a disability performance scholar and Sarah, an interdisciplinary artist-scholar with lived experience of disability – considers the dancing body as redeemer in the specific case of a dancer experiencing ‘chemo fog’, or Chemotherapy-Related Cognitive Impairment (CRCI) after undergoing oncological treatments for Hodgkin Lymphoma. This work draws on Pini’s own lived experience of illness (Pini & Pini, 2019) in dialogue with Maguire-Rosier’s study of dancers with hidden impairments (Gibson & Maguire-Rosier, 2020). (...) In an exploratory account based on an interview with one another, the authors ask: when our senses and perceptions of ourselves and the world we become are obfuscated, what is the nature of the new relationship between the performing self and its absent body/mind/world? How can we shape our narrative and articulate who we are, what we are doing or where we are going, if we are moving in the ‘fog’? Our discussion reveals how Pini’s dancing body elucidates healing, while recovering an agentic perspective in her experience of alienation and frustration tied to chemo fog and related impairments. With this work we offer an original perspective on how a dancing body can resist theoretical diagnosis. (shrink)

This essay presents a theoretical construct upon which to base a working - "pragmatic" - definition of the History of Present Illness (HPI). The major thesis of this essay is that analysis of both the logic of hypothesis formation and literary narrative - especially detective stories - facilitates understanding of the diagnostic process. The essay examines three elements necessary to a successful development of a patient's HPI: the logic of hypothesis formation, based upon the work of the philosopher-logician, (...) Charles Sanders Peirce; the organization of knowledge in relation to structures of narrative; and the feedback necessary to the successful physician-interviewer. It concludes with a systematic description of the design of hypothesis formation within diagnoses. (shrink)

This edited collection draws on a range of disciplines in exploring the central place of narrative in social inquiry and understanding the ethical life. It provides scholarly and practical insights into the rewards and potential pitfalls of working in, and with narrative. It offers readers a broad range of carefully considered examples; the use of art in enhancing insight into the plights of rural communities in Australia; the use of illness narratives in medical education; applying narratives of (...) torture survivors and torturers in shaping humane political response and policy in the face of terrorism, and the place of the music, as a vehicle of story telling and moral growth. This volume illuminates the explicit links between the importance of narrative, that is, the telling of stories to create shape and meaning in our lives, and ethical engagement so critical to the achievement of a good life. (shrink)

Stroke survivors undergo a thorough cognitive diagnosis that often involves administration of multiple standardized tests. However, patient’s narrative discourse can provide clinicians with additional knowledge on patient’s subjective experience of illness, attitude toward current situation, and motivation for treatment. We evaluated the methods of analyzing thematic content and story types in relationship to cognitive impairment in stroke survivors with no aphasia. Cognitive impairment was evaluated in comparison to a group of 25 patients with orthopaedic injury not involving the (...) brain. Our findings primarily show that higher elaboration on own cognitive problems, physical ailments or coping strategies in LHD patients and cognitive problems, emotional issues and circumstances of illness onset in RHD patients is related to deficits in executive functions and retrieval of information from memory. Furthermore, RHD patients who use more chaos story type show lower executive functioning. However, these results did not survive the significance threshold of p < 0.05 after Bonferroni adjustment for multiple comparisons. In conclusion, this study provides preliminary evidence that stroke survivor’s narrative can constitute an additional source of clinically-relevant information regarding patient’s experience of illness and attitude toward recovery. This knowledge can aid clinicians and nurses in everyday interactions with the patients and support individualized strategy to treatment. Still, the current results need be confirmed with future studies in a larger cohort of stroke patients. (shrink)

The successful delivery of patient-centered care hinges on clinical affiliation for patients' personal needs and experiences. Narrative competence is a mode of thinking and set of actions that widens the clinical gaze beyond logico-scientific cognition. In this article, we investigate a tool that enables clinicians to rehearse their skills in narrative competence. We apply the narrative competence framework developed by the founding practitioners of narrative medicine to personal accounts of illness and patienthood published on the (...) Internet. We describe our use of the five-point framework in the close reading of 214 accounts by people with the life-threatening skin cancer melanoma. (shrink)

Direct-to-consumer television advertisements for Lyrica in the United States create narratives of gendered domestic normalcy to which women with fibromyalgia are encouraged to aspire through pharmaceutical intervention. This paper unpacks images and narratives within these advertisements to demonstrate that they rely on metaphors that represent gendered expectations in order to evoke guilt and provoke a desire for what Joseph Dumit calls “health as risk reduction,” and what I argue is an attempt to show disability being erased. Following Stuart Hall’s Encoding/Decoding (...) model of communication, viewers play a role in constructing societal expectations for women with chronic pain and for themselves. (shrink)

This study examined narrative identity in a group of 81 patients with schizophrenia and 50 healthy controls through the recall of self-defining memories. The results indicated that patients’ narratives were less coherent and elaborate than those of controls. Schizophrenia patients were severely impaired in the ability to make connections with the self and extract meaning from their memories, which significantly correlated with illness duration. In agreement with earlier research, patients exhibited an early reminiscence bump. Moreover, the period of (...) the reminiscence bump, which is highly relevant for identity development, was characterized by fewer achievements and more life-threatening event experiences, compared with controls. A negative correlation was found between negative symptoms, number of self-event connections and specificity of narratives. Our results suggest that schizophrenia patients have difficulties to organize and extract meaning from their past experiences in order to create coherent personal narratives. (shrink)

ABSTRACT‘Self-ambiguity’, we suggest, is best understood as an uncertainty about how strongly a given feature reflects who one truly is. When this understanding of self-ambiguity is applied to a view of the self as having both essential and shapable components, self-ambiguity can be seen to have two aspects: (1) uncertainty about one's essential or relatively unchangeable characteristics, e.g. one's sexuality, and (2) uncertainty about how to shape oneself, e.g. which values to commit to, actions to pursue, or essential features to (...) identify with. We explain how a narrative account of agency can accommodate these forms of self-ambiguity and argue that such an account also reveals another kind of self-ambiguity, namely, (3) uncertainty about whether one's established self-narrative represents who one really is. We illustrate this third form of self-ambiguity in the context of addiction where people's established addiction self-narratives make it difficult to identify with recovery. We argue that recovery will require embracing, especially, our third form of self-ambiguity as a chance for positive self-transformation. Treatment for addiction should, therefore, support people in going through and ultimately narratively resolving the inevitable self-ambiguities of the recovery process. (shrink)

In this paper, an attempt is made to develop an understanding of the essence of illness based on a reading of Martin Heidegger’s pivotal work Being and Time. The hypothesis put forward is that a phenomenology of illness can be carried out through highlighting the concept of otherness in relation to meaningfulness. Otherness is to be understood here as a foreignness that permeates the ill life when the lived body takes on alien qualities. A further specification of this (...) kind of otherness can be found with the concept of unhomelike being-in-the-world. Health, in contrast to this frustrating unhomelikeness, is a homelike being-in-the-world in which the lived body in most cases has a transparent quality as the point of access to the world in understanding activities. The paper then proposes that the temporal structure of illness can be conceptualised as an alienation of past and future, whereby one’s past and future appear alien, compared with what was the case before the onset of illness. The remainder of the paper follows two paths as regards the temporality of illness. The first path explores the temporality of the body in relation to the temporality of the being-in-the-world of the self. One way of understanding the alienating character of illness is that nature, as the temporality of our bodies, ceases to obey our attempts to make sense of phenomena: the time of the body no longer fits into the time of the self. The second path explored in the paper is that of narrativity. When we make sense of the present, in relation to our future and past, we do so in a special manner, namely, by structuring our experiences in the form of stories. Illness breaks in on us as a rift in these stories, necessitating a retelling of the past and a re-envisioning of the future in an effort to address and change their alienated character. These stories, however, never allow us to leave the silent otherness of our bodies behind. They are stories nurtured by the time of nature at the heart of our existence. It is then claimed that the idea of life’s being a story must be understood in a metaphorical sense, and an exploration of how phenomenology addresses the metaphoric quality of its conceptuality is ushered in. It is pointed out that metaphors can be systematically related to each other and that they always have a founding ground in the orientation and basic activities of the lived body. Therefore, if the concepts used in working out a phenomenological theory of health and illness are, to a certain extent, metaphorical, one could, nevertheless, claim that the metaphoric qualities of the phenomenological concepts are primary in referring back to the lived body and the way it inhabits the world. (shrink)

In At the Will of the Body , Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait. Ill people are more than victims of disease or patients of medicine they are wounded storytellers. People tell stories to make sense of their suffering when they turn their diseases (...) into stories, they find healing. Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known--Gilda Radner's battle with ovarian cancer--to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic. Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new. (shrink)

This study examined narrative identity in a group of 81 patients with schizophrenia and 50 healthy controls through the recall of self-defining memories. The results indicated that patients’ narratives were less coherent and elaborate than those of controls. Schizophrenia patients were severely impaired in the ability to make connections with the self and extract meaning from their memories, which significantly correlated with illness duration. In agreement with earlier research, patients exhibited an early reminiscence bump. Moreover, the period of (...) the reminiscence bump, which is highly relevant for identity development, was characterized by fewer achievements and more life-threatening event experiences, compared with controls. A negative correlation was found between negative symptoms, number of self-event connections and specificity of narratives. Our results suggest that schizophrenia patients have difficulties to organize and extract meaning from their past experiences in order to create coherent personal narratives. (shrink)

This section welcomes submissions addressing literature as a means to explore ethical issues arising in healthcare. “Literature” will be understood broadly, including fiction and creative nonfiction, illness narratives, drama, and poetry; film studies might be considered if the films are adaptations from a literary work. Topics include in-depth analysis of literary works as well as theoretical contributions, discussions, and commentary about narrative approaches to disease and medicine, the way literature shapes the relationship between patients and healthcare professionals, the (...) role of speculative fiction as a testing ground for future scenarios in healthcare, and so on. Articles discussing the uses of literature for bioethics education and outreach will be particularly appreciated. Research on literature not originally written in English will be considered as long as it has also been published in translation. Submissions should include an abstract and should conform to theCQGuidelines for Contributors. To submit an article or discuss a suitable topic, write to Antonio Casado da Rocha [email protected].:This article proposes a concept of narrative autonomy to supplement existing accounts in healthcare ethics. This is done by means of a comparison between three end-of-life scenarios: Tolstoy’sThe Death of Ivan Ilyichand two related contemporary stories by Lorrie Moore and Bernhard Schlink, which explore some problems arising when extremely individualistic notions of patient autonomy are put into practice. It is argued that the best model for palliative care is a cooperative one in which patient autonomy is understood as essentially social, and that involves decisional, executive, informational, and narrative dimensions. (shrink)

Once upon a time, medicine dismissed narrative as unimportant and uninteresting. Then, in the late 1980s, physicians and scholars became interested in how the study of narrative could enhance our understanding of illness and health care, and the field that came to be known as “narrative medicine” developed. Some of this scholarly activity focused on the idea of narrative ethics.After a flurry of activity around the turn of the twenty‐first century, narrative ethics seemed to (...) stall. The general interest in narrative in medicine continued but with few new ideas on how one might use narrative toward ethical ends. In the last few years, however, forward momentum has returned. The timing seems appropriate, therefore, for a “state of the field” report of sorts. (shrink)

In this article, I provide a phenomenological exploration of the role played by narrativity in shaping affective experience. I start by surveying and identifying different ways in which linguistic and narrative expression contribute to structure and regulate emotions, and I then expand on these insights by taking into consideration the phenomenology of borderline personality disorder. Disruptions of narrative abilities have been shown to be central to the illness, and I argue that these disruptions are at the origin (...) of a number of alterations of affective experience. In particular, I suggest that due to the narrative “fragmentation” characteristic of the disorder, the emotions experienced by borderline patients are less differentiated and have a predominantly bodily and unregulated character. (shrink)