Towards a ``Good' Death: End-of-Life Narratives Constructed in An Intensive Care Unit

End-of-life decisions regarding the withdrawal and withholding of lifesupporting technology have become commonplace within intensive careunits (ICUs). In this paper, we examine the dialogue between ICU teammembers and families regarding limitation of treatment as a therapeuticnarrative – that is, as a story which frames therapeutic events aswell as the critically ill patient's experience in a meaningful andpsychologically comforting way for families and health care providersalike. The key themes of these end-of-life narratives are discussed, aswell as the qualities that the stories share with other narratives ofthe same genre.     

Negotiating A Path To Efficacy At A Clinic Of Traditional Chinese Medicine

Chinese medicine emphasizes the underlying connection of the bodily, emotional, social, and environmental dimensions in illness experience and healing. The therapeutic process, characterized as tiao (attuning, balancing), targets the patient’s overall illness condition and experience including both physical and nonphysical aspects of suffering. This study, incorporating techniques of microanalysis as an ethnographic tool and using an actual recorded clinical interaction as data, analyzes how the path to effective healing is negotiated among multiple clinical realities at a clinic of Chinese medicine in Beijing. A close examination of interactive features of actual face-to-face communication between a doctor and a patient in a specific case of “stagnation of emotions” reveals that, for an illness recognized in Chinese medicine as originating from disordered emotions, adjustment of the patient’s perceptions of reality and social relations is particularly salient in the “attuning” process. Efficacy then should be understood as more than physiological changes produced by herbs, but also as emergent through an interactive event of clinical encounters. This study demonstrates empirically how the clinical process of Chinese medicine works to define and transform the patient’s emotions and experience.     

Policy actors' narrative constructions of migrants' integration in Malmö and Bologna

Governments have policies explicitly directed at the integration of migrants. This article addresses how policymakers and politicians privilege certain constructions of the social relationship between migrants and the majority society (expressed through narratives of ‘integration’), while making it seem as if they were presenting facts in their policies. These constructions provide the justifications for adopting a direction in policy-making over other alternatives. This article sets to analyse comparatively how policy actors in two urban contexts construct migrants' integration through policy narratives and how, within this, they evaluate migrants as ‘integrated’ and ‘non-integrated’. Through narrative analysis, the article sheds light on how migrants are positioned by political institutions within the normative order of the society in which they live. Furthermore, it shows that local policy-making is shaped by national citizenship regimes, models of steering, welfare regimes and stories about the nation and its people.     

Giving an Account of One’s Pain in the Anthropological Interview

In this paper, I analyze the illness stories narrated by a mother and her 13-year-old son as part of an ethnographic study of child chronic pain sufferers and their families. In examining some of the moral, relational and communicative challenges of giving an account of one’s pain, I focus on what is left out of some accounts of illness and suffering and explore some possible reasons for these elisions. Drawing on recent work by Judith Butler (Giving an Account of Oneself, 2005), I investigate how the pragmatic context of interviews can introduce a form of symbolic violence to narrative accounts. Specifically, I use the term “genre of complaint” to highlight how anthropological research interviews in biomedical settings invoke certain typified forms of suffering that call for the rectification of perceived injustices. Interview narratives articulated in the genre of complaint privilege specific types of pain and suffering and cast others into the background. Giving an account of one’s pain is thus a strategic and selective process, creating interruptions and silences as much as moments of clarity. Therefore, I argue that medical anthropologists ought to attend more closely to the institutional structures and relations that shape the production of illness narratives in interview encounters.     

Interpreting Diabetes Mellitus: Differences between Patient and Provider Models of Disease and their Implications for Clinical Practice

Current medical literature suggests that Type 2 diabetes mellitus can becontrolled by diet and hypoglycemic agents or diet and insulin therapy.Nevertheless, adhering to a low glucose dietary regimen remainsproblematic for a majority of patients, and management of the disease isan ongoing source of frustration for physicians and other providers.While calling for more research on the physician's experience oftreating chronic conditions like diabetes, the authors argue that muchof the current frustration stems from the different frames orexplanatory models that physicians and patients use to understand thedisease. By comparing physician narratives collected in several clinicalcontexts (e.g., medical lectures, precepting sessions, patient caresessions and personal interviews) with patient stories obtainedprimarily through narrative interviews, the authors highlight crucialdifferences in the way physicians and patients experience and thinkabout the disease. In particular, the authors highlight differencesbetween physicians and patients across five dimensions: etiology,symptoms/signs, factors which affect blood sugar, ideal blood sugar,and future prospects. In concluding, the authors sketch out elements ofa theory of clinical practice involving diabetes care. Data for thestudy was collected at two family practice training sites in Chicago.     

The Patient’s View: Issues of Theory and Practice

Almost all the knowledge now produced about psychiatry includes what is called “the patient’s or client’s perspective.” This paper analyzes how this notion has been framed in the discourses on mental health over the last two decades, particularly in mental health research and in anthropology. The very concept of the “patient’s perspective” is a social and historical construct. Despite its remarkable prevalence, the notion remains vague. Mental health research pictures it as a stable attribute of the individual. Anthropologists integrate the contextual nature of the patient view; but they still largely envision the psychiatric patient as a rational actor producing narratives based on common sense. However, in psychiatric practice, the client’s perspective is not something the patient individually produces; it is rather shaped by and in a context. To explore this process, my research investigated interactions between staff and patients in a French community mental health center, and showed that the client’s perspective is the result of a collective process. Further analysis demonstrates that eliciting or producing the patient’s view is sometimes considered a therapeutic goal in itself, since being granted the status of a rational and narrative actor gives access to the most valued model of care, one that is based on partnership. Being an outcome that is negotiated between patients and care providers, the “patient’s view” then becomes a new resource in mental health settings.

Desire,Envy and Punishment: A Matsigenka Emotion Schema in Illness Narratives and Folk Stories

Accumulating evidence suggests that folktales in some societies are characterized by a culturally constructed underlying emotional structure, or Cultural Emotion Schema. In this paper we argue that Matsigenka illness narratives and folk stories share an underlying emotion schema, in which death and suffering result from conflicts between strong-willed individuals prompting anger and aggression. Analysis of illness narratives collected by Izquierdo in the Matsigenka community of Kamisea in the Peruvian Amazon between 1996 and 1999 reveals a common pattern in which envy and frustration lead to the belief in sorcery as the main cause of illness and death. This pattern contrasts with the typical stories of a previous generation collected by the Johnsons among the Matsigenka of Shimaa and other Matsigenka researchers, where sorcery beliefs were virtually absent. Our argument is that important changes in ecology, community, politics, and religion have led to a systematic rise in feelings of envy and frustration, and that these have increased the likelihood that sorcery accusations will occur. We explore the likelihood that such beliefs increase as egalitarian peoples become more crowded into settlements where they are likely to experience greater inequality, more competition for resources and increased societal and personal stress.     

Inference or Enaction? The Impact of Genre on the Narrative Processing of Other Minds

Do narratives shape how humans process other minds or do they presuppose an existing theory of mind? This study experimentally investigated this problem by assessing subject responses to systematic alterations in the genre, levels of intentionality, and linguistic complexity of narratives. It showed that the interaction of genre and intentionality level are crucial in determining how narratives are cognitively processed. Specifically, genres that deployed evolutionarily familiar scenarios (relationship stories) were rated as being higher in quality when levels of intentionality were increased; conversely, stories that lacked evolutionary familiarity (espionage stories) were rated as being lower in quality with increases in intentionality level. Overall, the study showed that narrative is not solely either the origin or the product of our intuitions about other minds; instead, different genres will have different—even opposite—effects on how we understand the mind states of others.     

The (Un)managed Self: Paradoxical Forms of Agency in Self-Management of Bipolar Disorder

Self-management of mental illness is a therapeutic paradigm that draws on a distinctly biomedical conceptualization of the isolability of personhood from pathology. This discourse posits a stable and rational patient/consumer who can observe, anticipate, and preside over his disease through a set of learned practices. But in the case of bipolar disorder, where the rationality of the patient is called into question, the managing self is elusive, and the disease that is managed coincides with the self. While humanist critiques of the biomedical model as applied to mental illness have argued that its logic fatalistically denies patients intentionality and effectiveness (Luhrmann, Of Two Minds: The Growing Disorder in American Psychiatry, 2000), biomedical proponents claim that psychiatry’s way of envisioning the body as under the control of the intentional mind actually returns agency to the patient/consumer. Rose (The Psychiatric Gaze, 1999) remarks that biomedical models have the potential to “[open] that which was considered natural to a form of choice” (p. 37), and that techniques of medical self-control help constitute the free embodied liberal subject who is obliged to calculate and choose. Through an examination of clinical literature as well as the practices and narratives of members of a bipolar support group, this paper explores ethnographically the possibilities for subjectivity and agency that are conditioned or foreclosed by the self-management paradigm, which seems to simultaneously confer and deny rational selfhood to bipolar patients. To express their expertise as rational self-managers, patients/consumers must, paradoxically, articulate constant suspicion toward their present thoughts and emotions, and distrust of an imagined future self. I argue that through their self-management practices, bipolar support group members model provisional and distributed forms of agency based on an elusive, discontinuous, and only partially knowable or controllable self—revealing, perhaps, the limits of the contemporary reification and medicalization of both selfhood and disease.     

Between a Rock and a Hard Place: The Power and Powerlessness of Transnational Narratives among Gay Martinican Men

In Martinique, self-identified gay men often tell each other stories about gay communities in other societies. France and Martinique are central characters in these stories but their presence is largely negative: life in the former is criticized for its economic or racial hardships and life in the latter is criticized for homophobia, hypocrisy, and smallness, creating a frustrating catch-22 for these men. However, in these narratives Quebec often emerges as an ideal destination of racial and sexual freedom. In this paper, I argue that Quebec is signified as utopic in terms that are antithetical and therefore profoundly connected to impressions of social life in France and Martinique. At the same time, however, I maintain that these narratives also reveal common threads in the African-pan-American diasporic experience. Furthermore, these men's experiences of "gay" life in other countries demonstrate their awareness of a "global gay" identity, albeit one that is commercially and ideologically centered in Euro-American societies, [homosexuality, Martinique, transnationalism, diaspora, race]     

Traumatic Amputation: A Case of Laotian Indignation and Injustice

Culture is an essential variable of diagnosis and treatment. A cultural perspective draws attention to the social context within which symptoms arise, are given meaning, and are managed. Ethno-cultural work on illness narratives suggests that most people can provide culturally-based explanations for their symptoms. While these explanations are inconsistent with biomedical theory, they relieve patient distress by allowing the patient to create meaning for symptoms. Exploring the characteristics, context, and antecedents of the symptoms enables the patient to convey them to the clinician who may have a divergent explanation of sickness. This case study uses the Outline for Cultural Formulation of the DSM-IV created for clinicians to elicit a narrative account of the illness experience from the patient. Our study examines how the patient, a Laotian used social indignation (“Kwam khem keuang”) as an explanatory model for his ailment. He was diagnosed with post-traumatic stress disorder after having undergone a traumatic amputation. In the process of explaining his illness through a cultural idiom, the patient was able to reveal both personal and collective meaning of repressed anger and frustration, expressing them in a context that was acceptable to him. This cultural idiom allowed the patient to reflect upon the structure of the health care system and the specific context in which symptoms and their possible origins are recounted and explored. It also clarified to the treating clinicians some categories of experience and causal explanations that did not fit easily with western biomedical and psychiatric understanding. The case study illustrates how a cultural approach to illness from the patient’s perspective offers a reflexive stance on the clinician–patient interaction that allows for better patient care.     

Sacred Conceptions: Clinical Theodicies, Uncertain Science, And Technologies Of Procreation In India

This article argues that the rapid transfer of assisted conception technologies, such as in vitro fertilization, to India is not restricted merely to the modalities of offering potential biomedical resolution of infertility but includes, more crucially, how clinicians and infertile consumers assimilate the “Western technoscience” of conception. The article draws on a larger multisite ethnographic study of infertility and assisted conception in India’s five major cities and is principally based on narratives of clinicians and infertile couples and on clinic-based ethnographic observations. In this article I contend that the success or failure of assisted conception, when situated in the universe of Hindu faith, becomes a powerful critique of the “incompleteness” of the “Western” science of conception. Situating this contention in the broader context of a clinician’s faith, I assert that assisted conception—by conjoining seemingly disparate domains of the traditional and the modern, the sacred and the profane, the human and the superhuman, science and religion—produces clinical theodicies that help explain and contain the tentativeness permeating the conception technologies. The article concludes by arguing that this enchanted version of a thoroughly disenchanted worldview of biomedicine is part of a larger cultural process of indigenization of biomedicine in India.     

Dynamics of Inclusion and Exclusion: Comparing Mental Illness Narratives of Haredi Male Patients and their Rabbis

By comparing versions of mental illness narratives – told by Haredi (Utraorthodox Jews) male patients of a mental health clinic in Israel and by their rabbis – this paper relates to two distinct, yet interrelated, theoretical questions: the place and agency of narrators, and the tension between experience and representation. A pair of narratives exemplifies a pattern in which the patients (Talmudic students) tell a narrative of a sudden breakdown related to a dramatic meeting with a non-human figure (often, a woman) or force. Their rabbis, by contrast, tell a narrative that emphasizes their students' mundane symptoms, ``abnormal' and ``immoral' behavior, and use a local adaptation of a Western psychological explanatory model. A dynamic of inclusion and exclusion emerges as students are seeking legitimization and avoidance of stigma, while their rabbis are silencing themes that challenge social and cultural orders. The different narratives are further interpreted in the context of the micropolitics of the interviews and of identity politics between the Haredim and secular Israelis. This social dynamics shows how differently placed social actors-narrators-interpreters construct differently contested and diverse cultural narratives of a seemingly shared reality.     

Symptom and Surface: Disruptive Deafness and Medieval Medical Authority

This essay examines constructions of deafness in medieval culture, exploring how deaf experience disrupts authoritative discourses in three textual genres: medical treatise, literary fiction, and autobiographical writing. Medical manuals often present deafness as a physical defect, yet they also suggest how social conditions for deaf people can be transformed in lieu of treatment protocols. Fictional narratives tend to associate deafness with sin or social stigma, but they can also imagine deaf experience with a remarkable degree of sympathy and nuance. Autobiographical writing by deaf authors most vividly challenges diagnostic models of disability, exploring generative forms of perception that deafness can foster. In tracing the disruptive force that deaf experience exerts on perceived notions of textual authority, this essay reveals how medieval culture critiqued the diagnostic power of medical practitioners. Deafness does not simply function as a symptom of an individual problem or a metaphor for a spiritual or social condition; rather, deafness is a transformative capacity affording new modes of knowing self and other.     

Neuronal autoantibody titers in the course of small-cell lung carcinoma and platinum-associated neuropathy

The aims of this study were to investigate, in patients with newly diagnosed small-cell lung carcinoma (SCLC), whether or not there may be a relationship between the presence, type or titer of circulating neuronal autoantibodies and (i) the extent of SCLC dissemination at presentation, (ii) the development of peripheral neuropathy during platinum chemotherapy, (iii) survival time. We studied stored serum from 58 patients with uncomplicated SCLC who had participated in two trials conducted by the North Central Cancer Treatment Group (NCCTG); 29 had extensive disease and 29 had limited disease. No patient had neuropathy or other neurological or paraneoplastic problems at the time of enrollment but each group included 14 or 15 patients respectively who developed peripheral neuropathy in the course of chemotherapy. We tested five consecutive serum specimens from each patient in blinded fashion by (i) an indirect immunofluorescence assay optimized to detect neuron-restricted nuclear and cytoplasmic antibodies (triple substrate of mouse cerebellum, gut and kidney), and (ii) immunoprecipitation assays to detect neuronal Ca²⁺-channel-binding antibodies (N-type and P/Q-type). Sera that were positive by immunofluorescence were analyzed further by Western blotting. Neuronal autoantibodies were significantly more frequent in patients who had limited SCLC at presentation (12/29 or 41% positive) than in those with extensive SCLC (5/29 or 17% positive, P = 0.02). Neuronal autoantibodies of nuclear or cytoplasmic specificity were found in 50% of the seropositive patients with limited SCLC (21% of the total group), but in no patient with extensive SCLC (P = 0.01). The frequency of neuronal autoantibodies did not differ significantly among patients who did and did not develop peripheral neuropathy. Titers fell progressively during chemotherapy and did not rise again when peripheral neuropathy became clinically evident. This argues against a synergism between drug toxicity and neuronal autoimmunity as the mechanism of platinum-associated peripheral neuropathy. Seropositivity for neuronal autoantibodies did not affect the survival of patients with either limited or extensive SCLC. It is conceivable that the immunosuppression attendant on combined cisplatin/etoposide therapy cancels a pre-existing protective antitumor immune response (presumably cytotoxic-T-cell-mediated) for which the nuclear and cytoplasmic paraneoplastic IgG autoantibodies serve as a surrogate marker. Testing of this hypothesis would require the survival of seropositive and seronegative patients to be compared in a larger trial, using a therapeutic modality that does not compromise immunocompetence. Received: 20 November 1998 / Accepted: 6 January 1999     

The politics of recognition in culturally appropriate care

Over the last 20 years, the concept of culturally appropriate health care has been gradually gaining popularity in medicine and public health. In calling for health care that is culturally appropriate, minority groups seek political recognition of often racialized constructions of cultural difference as they intervene in health care planning and organization. Based on interview narratives from people involved in community organizing to establish a federally funded community health center in a mid-size New England city, I chart the emergence of a language of "culturally appropriate health care" in language used to justify the need for a health center. An identity model of recognition underlies the call for ethnic resemblance between patient and provider seen in many culturally appropriate care programs. I contrast this model of health care with earlier calls for community access and control by activists in the 1970s and explore the practical and theoretical implications of each approach.     

Once upon a time in the West? Stories of migration and modernity from Kerala, South India

This article explores how members of an ex-untouchable, 'backward' community of South India – the Izhavas of Kerala – represent and make sense of their entanglements within 'modernity'. Izhava narratives suggest ambivalence: while failure stories remain individualized, narrated in terms of bad luck or others' cheating, success stories are presented as exemplars of a twentieth-century global master narrative of progress. We note many correspondences between this ex-untouchable community's optimistic master narrative and another powerful and pervasive meta-narrative – the global story of modernity as development, promoted by state government, reform movements, and development theorists alike. Life-history narratives forcibly bring us – European interlocutors – into the same space as the tale-tellers, speak of encounters between Indians and Europeans, and urge us to recognize that we live in 'one world'. Malayalis stake claims for equal participation in modernity's projects even as they point out ways in which coevalness is denied. This prompts us to suggest that narratives of modernity in India and the UK should occupy the same analytical space, contrary to moves to theorize multiple modernities. With our Malayali respondents, we are participating in a confabulation/confabrication of a shared story which appears to be one about the nature of global capitalism. Modernity produces dream and disillusionment, promising progress to all while delivering to a few. In its seemingly endless capacity for self-regeneration and reinvention it is, as a phenomenon in global history, far from over. Even as theorists try to write it off as a moment past or a project failed, it still holds out its promises and provides a structuring framework for contemporary life-stories.     

RPE65 gene: multiplex PCR and mutation screening in patients from India with retinal degenerative diseases

We used multiplex PCR followed by sequencing to screen for mutations in the 14 exons of theRPE65 gene in early-hildhood-onset autosomal recessive retinitis pigmentosa (arRP) and Leber’s congenital amaurosis (LCA) patients. The RPE65 protein is believed to play an important role in the metabolism of vitamin A in the visual cycle and mutations identified in the gene could have implications for vitamin A-based therapeutic intervention. We were able to identify a homozygous mutation (AAT → AAG) in exon 9 in an arRP patient and a heterozygous missense transversion (AAT → AAG) also in exon 9 of an LCA patient. We also identified a polymorphism in exon 10 (GAG → GAA) in an arRP as well as an LCA patient. Mutation screening would be greatly facilitated by multiplex PCR which could cut down costs, labour and time involved. The nucleotide changes observed in this study could bede novo. Though a larger study has been undertaken, from the preliminary results it appears that in India theRPE65 gene seems to be less involved in causation of LCA.