In Rita Charon's account of narrative medicine, empathy seems to be an essential element of the clinical relationship. However, empathy has not received much attention, which I believe is problematic. First, I show that not only is there no clear definition of what empathy is, but that this conceptual gap creates ambiguity about its role in the practice of narrative medicine. Second, I argue that certain passages in Charon's work seem to implicitly characterize empathy as a (...) combination of cognitive empathy, affective empathy, and sympathy, and that its inclusion in the practice of narrative medicine can be problematic. Third, following Dan Zahavi, I argue that a phenomenological account of empathy not only seems most compatible with the practices, values, and theoretical framework of narrative medicine, but is also capable of resolving the problems posed by alternative definitions of empathy and the ambiguity about the role of empathy in narrative medicine. (shrink)

Narrative medicine is one of medicine’s most important internal reforms, and it should be a critical dimension of healthcare debate. Healthcare reform must eventually ask not only how do we pay for healthcare and how do we distribute it, but more fundamentally, what kind of healthcare do we want? It must ask, in short, what are the goals of medicine? Yet, even though narrative medicine is crucial to answering these pivotal and inescapable questions, it (...) is not easy to describe. Many of its core claims go against the grain of common sense thinking about medicine. This article argues that the best way to understand narrative medicine is to tell a story that puts its emergence in historical context. (shrink)

Narrative Medicine in Hospice Care argues that the models of selfhood and care found in the work of Paul Ricoeur can serve as a framework for clinicians, caregivers, and end-of-life patients regardless of the patients’ verbal and cognitive capabilities.

The move to patient-centered medical practice is important for providing relevant and sustainable health care. Narrative medicine, for example, suggests that patients should be involved significantly in diagnosis and treatment. In order to understand the meaning of symptoms and interventions, therefore, physicians must enter the life worlds of patients. But physicians face high patient loads and limited time for extended consultations. In current medical practice, then, is narrative medicine possible? We argue that engaging patient perspectives in (...) the medical visit does not necessarily require a lengthy interview. Instead, a new orientation to this process that emphasizes dialogue between practitioners and patients should be considered. In this new model, the purpose of the visit is to communicate successfully and develop a mutual understanding of illness and care. (shrink)

Rita Charon says that narrative medicine is about honoring stories of illness. In a system where physicians and patients can often feel as though they are reduced to numbers, narrative medicine is a plea to take the narratives of illness seriously. But what does it mean to honor a story? In this essay, I use the framework of narrative medicine to offer narrative reflections on the concept of honor inspired by on three definitions, (...) including respect, moral rightness, and high regard. I explain how each definition illustrates an aspect of honor and its role as an ethical virtue in narrative medicine. (shrink)

This essay proposes an expansion of the concept of narrative competence, beyond close reading, to include two more skills: the collaborative construction and compelling performance of stories. To show how this enhanced form of narrative competence can be attained, the essay describes Off Script, a cocurricular medical storytelling program with three phases: 1) creative writing workshop, 2) dress rehearsal, and 3) public performance of stories. In these phases, Off Script combines literary studies, creative writing, reflective practice, collegial feedback, (...) and drama. With increased narrative competence, Off Script participants are likely better equipped to engage in more impactful health advocacy and partner with patients more effectively. (shrink)

Mindfulness based interventions are rapidly emerging in health care settings for their role in reducing stress and improving physical and mental health. In such settings, the religious roots and affiliations of MBIs are downplayed, and the possibilities for developing spiritual, even mystical, states of consciousness are minimized. This article helps rebalance this trend by using the tools of medical humanities and narrative medicine to explore MBI as a bridge between medical and spiritual approaches to health related suffering. My (...) narrative medicine method draws insights from the arts and humanities that are rarely used in standard clinical research but are increasingly common among medical humanities and narrative medicine scholars. The specific path I take will be to work through historical, linguistic, and philosophic dimensions of mindfulness and mysticism as relevant to illness, suffering, death, and dying. I close with two case examples in which mindfulness is used as an intentionally spiritual practice for health concerns. (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)

This paper describes a pilot study of a new model for narrative medicine training, “community-based participatory narrative medicine”, which centers on shared narrative work between healthcare trainees and patients. Nine medical students and eight patients participated in one of two, five-week-long pilot workshop series. A case study of participants’ experiences of the workshop series identified three major themes: the reciprocal and collaborative nature of participants’ relationships; the interplay between self-reflection and receiving feedback from others; and (...) the clinical and pedagogical implications of the CBPNM model. Principles and proposed outcomes of the CBPNM model are presented. (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)

In “Communication Breakdown: Probing the Limits of Narrative Medicine and its Discontents” (2019), David J. Leichter engages practical experience teaching medical ethics in the college classroom to explore opportunities—and limits—of narrative engagement within medical ethics and clinical practice. Leichter raises concerns regarding potential epistemic harms, both testimonial and hermeneutical, when individuals, or their pain, cannot be adequately recognized through expressive modes traditionally understood as “narrative.” While I largely agree with Leichter’s worries about narrative authority and (...) limits, I challenge his characterization of “narrative medicine.” In response, I suggest that “narrative medicine” is more than merely narrative engagement in medicine. As theorized by Rita Charon (2001, 2006), “narrative medicine” involves an inclusive approach to what narrative is, and more than mere mastery of “narrative competency.” I argue that at least one way to conceptualize “narrative medicine” is as a technical term, which refers to the process of attention, representation, and affiliation Charon develops as the achievement of narrative medicine. When understood in this technical way, narrative medicine can both resist and respond to the kinds of epistemic harms about which Leichter is rightfully worried. (shrink)

The past 10 years have seen considerable developments in the use of narrative in medicine, primarily through the emergence of the so-called narrative medicine. In this article, I question narrative medicine’s self-understanding and contend that one of the most prominent issues is its lack of a clear epistemological framework. Drawing from Gadamer’s work on hermeneutics, I first show that narrative medicine is deeply linked with the hermeneutical field of knowledge. Then I try (...) to identify which claims can be legitimately expected from narrative medicine, and which ones cannot be. I scrutinize in particular whether narrative medicine can legitimately grasp the patient’s lived experience of his or her illness. In the last section of this article, I begin to explore the potential usefulness of this epistemological clarification. This analysis allows for a further understanding of what is really at stake with narrative medicine, and thus to identify when it may be convenient, and when it may not. Furthermore, this clarification opens up promising new possibilities of dialogue with critics of the field. I conclude that narrative medicine finds its proper place as a possible tool available to mediate dialogue, which is at the heart of the clinical encounter in medical practice. (shrink)

In this paper we (1) define and describe the practice of narrative medicine, (2) reveal the need for narrative medicine by exposing the presuppositions that give rise to its discounting, including a reductive empiricism and a strict dichotomy between scientific fact and narrative value, (3) show evidence of the effects of education in narrative competence in the medical clinic, and (4) present Peircean realism as the proper conceptual model for our argument that the medical (...) school curriculum committees should give space to the employment of the scientific and literary knowledge in medical practice. On account of our argument, we contend that the medical community should tend to latitude and openness with regard to the tools we use to resolve medical problems. These tools include both biomedical and narrative knowledge. (shrink)

The humanist tradition developed in the Renaissance that not only cultivated the human spirit but applied its knowledge for the purpose of improving society across various humanist and scientific disciplines is not altogether extinct. Using the erudite Swiss physician and botanist Anton Schneeberger (1530–1581) as a founding father of sorts of modern humanist medicine confronted with war, I discuss the recuperation of humanism in the twentieth century, first in the thought of psychologist Kurt Lewin (1890–1947) who, under war circumstances, (...) produced a work whose analytical acumen can still be used today, and subsequently in the creation of the discipline of narrative medicine that, unwittingly perhaps, echoes Schneeberger’s insight into the imperative of inserting storytelling into the practice of both patient- and physician-centered medicine. In the background of the argument is the existence of a new society, a martial society that functions as if there were war despite its ostensible state of peace. (shrink)

In 2018-2019, at the Keck School of Medicine of the University of Southern California, we developed and piloted a narrative-based health systems science intervention for patients living with HIV and medical students in which medical students co-wrote patients’ life narratives for inclusion in the electronic health record. The pilot study aimed to assess the acceptability of the “life narrative protocol” from multiple stakeholder positions and characterize participants’ experiences of the clinical and pedagogical implications of the LNP. Students (...) were recruited from KSOM. Patients and staff were recruited from the Maternal, Child, and Adolescent/Adult Center for Infectious Disease and Virology at Los Angeles County+USC Medical Center. Ten patients, seventeen students, and ten MCA staff participated in the pilot study. Qualitative methods were used to gather data from students’, patients’, and staff’s perspectives. Three themes emerged from the thematic analysis: patients’ life narratives conveyed their unique life experiences and voices; the protocol could result in wide-ranging effects on HIV care; the LNP enabled students to contribute value to patients’ healthcare. Across groups, participants considered the LNP an acceptable intervention. The LNP, its limitations, and implications for HIV care, narrative medicine, and health information technology are presented. (shrink)

Training residents to become humanistic physicians capable of empathy, compassionate communication, and holistic patient care is among our most important tasks as physician educators. Narrative medicine aims to foster those highly desirable characteristics, and previous studies have shown it to be successful in fostering self-reflection, emotional processing, and preventing burnout. We aimed to evaluate pediatric residents’ perceptions of a novel narrative medicine curriculum. After the initiation of a longitudinal narrative medicine curriculum, focus groups were (...) conducted with residents who participated in at least one narrative medicine session. The curriculum was viewed positively, and residents found the sessions to be helpful in developing empathy, offering a space for reflection, and introducing new perspectives. Challenges noted were perception of relevance, timing of sessions, and interpretation by non-native English-speaking residents. With attention to linguistics and thematic undertones, narrative medicine is a feasible, replicable, and accepted teaching modality for pediatric residents to foster empathy, process emotions, and participate in self-reflection. (shrink)

BackgroundNarrative medicine is a well-recognized and respected approach to care. It is now found in medical school curricula and widely implemented in practice. However, there has been no analysis of the perception and usage of narrative medicine across different medical specialties and whether there may be unique recommendations for implementation based upon specialty. The aims of this study were to explore these gaps in research.MethodsFifteen senior physicians who specialize in internal medicine, pediatrics, or surgery (5 physicians (...) from each specialty) were interviewed in a semi-structured format about the utilization, benefits, drawbacks (i.e., negative consequences), and roles pertaining to narrative medicine. Qualitative content analysis of each interview was then performed.ResultsThree themes emerged from our analysis: roles, practice, and outcomes. Through these themes we examined the importance, utilization, barriers, benefits, and drawbacks of narrative medicine. There was consensus that narrative medicine is an important tool in primary care. Primary care physicians (general internists and general pediatricians) also believed that narrative medicine is not as important for non-primary care providers. However, non-primary care providers (surgeons) generally believed narrative medicine is valuable in their practice as well. Within specialties, providers’ choice of language varied when trying to obtain patients’ narratives, but choice in when to practice narrative medicine did not differ greatly. Among specialties, there was more variability regarding when to practice narrative medicine and what barriers were present. Primary care physicians primarily described barriers to eliciting a patient’s narrative to involve trust and emotional readiness, while surgeons primarily described factors involving logistics and patient data as barriers to obtaining patients’ narratives. There was broad agreement among specialties regarding the benefits and drawbacks of narrative medicine.ConclusionsThis study sheds light on the shared and unique beliefs in different specialties about narrative medicine. It prompts important discussion around topics such as the stereotypes physicians may hold about their peers and concerns about time management. These data provide some possible ideas for crafting narrative medicine education specific to specialties as well as future directions of study. (shrink)

Medicine and the humanities have been exploring new ways to improve the quality of healthcare. One such collaboration is the practice of narrative medicine which uses literature to teach physicians to better meet their patients’ needs. Narrative medicine, however, draws primarily from Anglophone literature, yet post-war French literature, philosophy and criticism have much to add to the theoretical and practical underpinnings of narrative medicine. As well, such scholarship provokes a number of questions that (...) expose certain weaknesses in narrative medicine as it is practiced currently. As this paper demonstrates, drawing post-war French literature into narrative medicine opens new ways to think about life, narrative and the place of the patient in the modern healthcare system. (shrink)

In this essay, the author reflects on his development as a physician by recounting two patient narratives of patients he cared for as a third year medical student. In the process of telling these stories of sickness, the author also provides a window on medical practice in the 1980’s in an academic medicine center and how practices have changed. Decades before what has been dubbed “narrative medicine,” the author learned the power of words to shape relationships and (...) promote professional formation. (shrink)

Telling stories after a loved one’s death helps surviving family members to find meaning in the experience and share perceptions about whether the death was consistent with the deceased person’s values and preferences. Opportunities for physicians to evaluate the experience of a patient’s death and to expose the ethical concerns that care for the dying often raises are rare. Narrative medicine is a theoretical perspective that provides tools to extend the benefits of storytelling and narrative sense–making to (...) physicians. This case study describes narrative writing workshops attended by physicians who care for dying patients. The narratives created revealed the physicians’ concerns about ethics and their emotional connection with patients. This case study demonstrates that even one–time reflective writing workshops might create important opportunities for physicians to evaluate their experiences with dying patients and families. (shrink)

In this paper, I address the marginalization of Russian immigrant patients within the American medical system. I argue that their already vulnerable position as immigrants with serious illnesses or conditions is exacerbated by unfamiliar social, cultural, and psychological terrain. This complex situation calls for a revision of the clinician–patient model in favor of a more comprehensive approach that takes seriously their double marginalization and its effects. I claim that one such approach, narrative medicine, can begin to address their (...) marginalized status by attending to not only the symptoms of the body, but to the story of the illness experience. (shrink)

Narrative is now a commonly used term in medical education, ethics, and practice. Yet the concept of narrative defies singular definition, and definitional and functional pluralism about narrative in health care remains underappreciated. Diverse conceptualizations of narrative are generically grouped under umbrella terms like “medical humanities” or “narrative medicine.” Such broad grouping risks undermining attention to relevant differences in use, meaning, or theory of narrative, overestimating the scope of certain criticisms of narrative (...) practice or use, while overlooking more insidious concerns. This essay moves toward a conceptual clarification of narrative in medicine through a process of naming and sorting. Narrative conceptualizations are grouped into narrative premises which include descriptive and normative claims about narrative, and narrative practices, which put narrative into action as process, method, or tool. A philosophical pragmatist approach to narrative in medicine reworks narrative anxieties about fact and fiction, truth or falsehood, in terms of the justifiability of belief, the inclusion or exclusion of experience, and the rationality of practices that are never perfect and always up for revision. (shrink)

Abstract:Life-writing combines, collates, or colludes many lives into one text. No work of fiction, biography, poetry, drama, memoir, journaling, blogging, or autobiography—all of them life-writing—does not do this, either blatantly or surreptitiously. I am interested in forms in which authors do not own up to writing about themselves under the cover of writing about another. This essay will focus on the implications of this generic collusion in writing in health care. Health care professionals are given space within their professional journals (...) to write personal essays about their work. Typically, these essays include a patient portrait or vignette as a means to probe some aspect of clinical practice. Some, not all, of these journals provide guidelines for protecting the privacy/confidentiality of patients described in the essay, including instructions for how to “fictionalize” patients or families to render them non-identifiable, even to themselves. A clinician-author may adopt this genre to illuminate a moment in practice that bears reflection and provides insight into the world of care. Often, however, the essay’s tenor is the author, and the patient is pressed into service as but the vehicle for that examination. The genre may be adopted to confess an error, to lament a woe (generalizable to all readers), to critique the actions of colleagues or patients, or to boast of a successful clinical intervention. Perhaps these essays are all, or should all, be co-authored “duets” by patient and clinician. (shrink)

During the last three decades there has been a wave of interest in narrative and narrativity in the humanistic and the social sciences. This “narrative turn” has spilled over to medicine, where narrative medicine has gained a considerable influence.However, there have also appeared second thoughts on the role of narratives in our lives, as well as on what narratives may mean in relation to clinical medicine.This article presents some influential voices in this debate and (...) scrutinizes the assumptions of narrative medicine in the light of these. It is concluded that there are sound reasons to tread this path with some caution and avoid the too far reaching ambitions on behalf of narrativity in relation to clinical medicine. However, narrative medicine should still be seen as a promising attempt within the broader scope of medical humanities to emphasize the importance of human subjectivity in clinical medicine. (shrink)

During the last three decades there has been a wave of interest in narrative and narrativity in the humanistic and the social sciences. This “narrative turn” has spilled over to medicine, where narrative medicine has gained a considerable influence. However, there have also appeared second thoughts on the role of narratives in our lives, as well as on what narratives may mean in relation to clinical medicine. This article presents some influential voices in this (...) debate and scrutinizes the assumptions of narrative medicine in the light of these. It is concluded that there are sound reasons to tread this path with some caution and avoid the too far reaching ambitions on behalf of narrativity in relation to clinical medicine. However, narrative medicine should still be seen as a promising attempt within the broader scope of medical humanities to emphasize the importance of human subjectivity in clinical medicine. (shrink)

With the increased acceptance of complementary and alternative medicine (CAM) within society, new research reflects deeper folk health histories beyond formal medical spaces. The contested relationships between formal and informal medicine have deep provenance and as scientific medicine began to professionalise in the 19th century, lay health knowledges were simultaneously absorbed and disempowered (Porter 1997). In particular, the ‘medical gaze’ and the responses of informal medicine to this gaze were framed around themes of power, regulation, authenticity (...) and narrative reputation. These responses were emplaced and mobile; enacted within multiple settings by multiple agents and structures over time. The work is drawn from secondary material from Ireland, which identify more indigenous narratives of health and act as potential sources for medical humanities. While assumptions have been made as to the place of folk-medicine being essentially rural, evidence will be presented which shows a more complex network of health beliefs and practices. The narratives of informal practice and folk-medicine drawn from evidence from Ireland point to more fluid and hybrid relations with formal medicine and suggest that the complementary nature of the two models reflected wider cultural debates and models of belief (Del Casino Jnr., Health & Place 10:59-73, 2004). (shrink)

This Medical Humanities Special Issue critiques and reflects on narrative practices around medical, psychiatric and trauma care. This introductory article explores the affordances of patient experience narratives and scenarios to illuminate lives interrupted by medical and psychological crises while raising questions about the medical ethics, epistemological frameworks and potential pathologising of diagnosing complex conditions. It discusses the problematics and ethics of ‘re-presenting’ trauma in art, photography, film or music and the potential for theatre to raise difficult issues in and (...) beyond medical training. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Narrative Symposium:Conflicting Interests in MedicineLaura Jean Bierut, Sal Cruz-Flores, Laura E. Hodges, Anthony A. Mikulec, Govind K. Nagaldinne, Erine L. Bakanas, John F. Peppin, Joel S. Perlmutter, William H. Seitz Jr., Edward Diao, Andre N. Sofair, and David M. Zientek• To Recruit or Not to Recruit for a Clinical Trial• An Unexpected Lesson• Am I on call for the entire Midwest?• Why is Medicare Wasting Away?• The Downside (...) of the Informed Consent Juggernaut• Expert Testimony at the Food and Drug Administration: Who Wants the Truth?• Crossroads: The Intersection of Personal, Professional Society, and Industry Relationships• A Change of Heart• The Evolution of Conflicts of Interest in a New Subspecialty: A Case Study of the Development of Interventional CardiologyCopyright © 2011 The Johns Hopkins University Press... (shrink)

The article presents a model of understanding that takes into account interaction, cultural knowledge, and the constraints of organizations and institutions. It analyzes discourse and cognition in high school biology classes and clinical consultations involving discussions of genetics. The analytical lenses of constraint satisfaction, coherence-based reasoning, and collective cognition reveal multilayered social, cultural, and interactional components of authority and agency that influence understanding. The analysis reveals similarities across settings in discourse structure and the ways that participants relate to local constraints. (...) In both types of settings, participants attempt to develop process narratives that present a sequential or causal relationship between information and lead to remembered understandings of concepts. However, the absence of certain process information that links terms or concepts functions like a missing plot point in a story, hindering the development of process narratives and understandings. In order to cover such information gaps, students and patients construct and display grey boxes. In addition to talk and text, these consist of various actions and resources specific to a local discourse framework such as pointing at graphics, tabular information, and symbols. Grey boxes satisfy the organizational constraints of time, resources, and task structure that affect interaction related to understanding concepts and procedures, but their connection to a particular discourse framework restricts the transfer of knowledge between settings. The power of medical practitioners and teachers to enhance or restrict understandings relates to the ways that they accommodate the use of grey boxes during interactions with clients and students. Professional frames of reference that teachers or practitioners apply to task interactions may constrain the ways students or clients apply grey boxes and process narratives. Awareness of the functions of process narratives and grey boxes presents opportunities to modify local discourse frameworks and increase understandings of concepts, medical conditions, and treatment options. (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)

The art of medicine stimulates the attitude of mind which concedes that on certain issues the patient knows what is right for him or her, and the public senses what is best for it. Not because they are right, but because on these issues there is no absolute right. —Anthony MooreThe benefits of fine literature, narrative analysis, and the listening to and telling of stories in education are well known (Carson 2001; Guillemin and Gillam 2006; Hunter 1996; Moore (...) 1978; Nussbaum 1990). Literature must not be overlooked in the planning or the delivery of health education and care. Narrative opens readers’ minds by promoting a plethora of viewpoints about stories and life. Through the facilitation of student-centred activities students can critically mull over central points of the story. In discerning meaning, conversations between students are generated around the crucial question, “Whose story is it?” Coincidentally this question drives, or ought to drive, medical integrity.Practitioners m. (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)

In lieu of an abstract, here is a brief excerpt of the content:"To make a difference...":Narrative Desire in Global MedicineByron J. Good and Mary-Jo DelVecchio GoodIf, as Arthur Frank (2002) writes, "moral life, for better and worse, takes place in storytelling," this collection of narratives written by physicians working in field settings in global medicine gives us a glimpse of some aspects of moral experience, practice, and dilemmas in settings of poverty and low health care resources. These essays (...) are written from the midst of practice, in diverse settings in Africa, South Asia, Latin America, the Caribbean, and the United States. The majority of the writers are practitioners of contemporary 'global medicine'—physicians from North America or Europe who spend part of their lives flying into settings of poverty or special need to practice medicine and work with on-going collaborative clinical and public health systems—while a smaller number are working in the societies in which they were born. Although a few work for classic humanitarian organizations or have developed their own local NGO's, the great majority are engaged in the 'hybrid life' described by Robert Riviello and noted by Renée Fox, moving between academic medical centers and distant health care systems that are supported by local governments, major international organizations and funding agencies, and international NGO's like Partners in Health. These diverse forms of practice have become a common model for contemporary clinicians engaged in what has emerged as a new discipline of global health or global medicine, and these narratives give us a glimpse of some of the enduring, as well as newly emerging, forms of moral practice and ethical dilemmas characteristic of today's global medicine.Many of these stories are filled with the tension and pathos that makes clinical narratives powerful to read. Physicians are forced to make unfathomable decisions about whether to resuscitate and keep a baby alive, using all means available, or to let the infant die, whether to carry out a procedure that will save an infant in birth but would put the mother at risk, about how to deal with a cancer found in a very advanced state. However, virtually all of the stories transcend these classical stories of the decisions physicians are forced to make by being placed in settings of great scarcity of resources, which stand in particular contrast to the academic medical settings in North America or Europe where many of these global medicine specialists have trained and many continue to practice. The unspeakable inequality of resources emerges throughout these narratives as a kind of master theme, as the underlying moral, as opposed to plot, which gives meaning and sense to the stories. For those who practice medicine in such settings, global inequalities and scarcity of medical resources are deeply felt. They produce the rage that Jeffrey Deal describes. ("I learned to despise American churches during that time, a time when my world encompassed a dying newborn in Sudan, as well as the air conditioned padded seats [End Page 121] of our affluent suburban church.") They produce the distinctive experiences of helplessness and pain felt by clinicians who cannot separate how they would be able to treat such a patient at home from how they have to practice in these settings. For those clinicians working in their own societies, scarcity of resources often produces deep anger at the corrupt governments that fail to support basic human services for the great majority of their population. ("We were temporary actors performing in the cynical play of scarcity on permanent display in Port-au-Prince," writes Haitian physician Paul Pierre about his experience prior to joining Partners in Health.)But for those who regularly travel back and forth across the divide between rich and poor, whether across national boundaries or within their own society, the challenge to live a moral life is unendingly complicated. While becoming a part of a struggle for global justice with colleagues and advocates from both sides of the divide, few of the narrators can avoid personal feelings of ambivalence and guilt at being able to easily move from one side of that divide to the other back home. Many fantasize about giving up their lives in the north to devote themselves... (shrink)

Children with innate variations of sex characteristics (also termed differences of sex development or intersex traits) are routinely subjected to medical interventions that aim to make their bodies appear or function more typically female or male. Many such interventions lack clear evidence of benefit, they have been challenged for thirty years, and they are now understood to violate children’s rights to bodily autonomy and bodily integrity. In this paper I argue that these persist in part due to epistemic injustices and (...) biomedical authority. Epistemic injustices include limited disclosure of current practices, the systemic marginalisation of community voices and psychosocial professionals, and attempts to discredit or misrepresent testimony. Bioethics has largely failed to change medical practice, and sometimes plays a role in perpetuating epistemic injustices. I find that the development of an intersex movement provides opportunities for epistemic justice and liberation by engaging with other disciplines and promoting oversight of medical decision-making. The paper draws particularly on Australian sources, including internationally influential ethical principles. (shrink)

This paper1 aims to develop a model of practitioner narrative competence specifically for mental health care. I begin by considering the status of narratives as a form of evidence. Following Rita Charon and Cheryl Misak, I claim that there is no distinction to be made between evidence-based medicine and narrative medicine. I then explore Charon’s model of practitioner narrative competence, and suggest that it can be fruitfully adapted for mental health care contexts, a project for (...) which I employ Jennifer Radden and John Z. Sadler’s psychiatric ethics. This project brings together two independently promising accounts to develop what I refer to as the adapted model of... (shrink)

Several studies have established the prevalence of discrimination upon the basis of weight in healthcare; however, these studies lack the element of human experience that makes addressing the issue vital to both individual and public health. Narrative medicine is an interdisciplinary field that utilizes powerful narrative skills and creativity to address the needs of those who seek and deliver healthcare, promoting healing, and self-reflection for both patients and physicians. This paper seeks to re-evaluate key studies regarding the (...) issue of weight discrimination in healthcare through the lens of narrative medicine. In doing so, it further integrates the aspect of human experience into the study of medical ethics in order to improve the lived experience of overweight individuals in medicine. (shrink)

This book presents an interpretation of pharmaceutical, surgical and psychotherapeutic interventions based on a univalent metalanguage: biosemiotics. It proposes that a metalanguage for the physical, mental, social, and cultural aspects of health and medicine could bring all parts and aspects of human life together and thus shape a picture of the human being as a whole, made up from the heterogeneous images of the vast variety of sciences and technologies in medicine discourse. The book adopts a biosemiotics clinical (...) model of thinking because, similar to the ancient principle of alchemy, tam ethice quam physice, everything in this model is physical as much as it is mental. Signs in the forms of vibrations, molecules, cells, words, images, reflections and rites conform cultural, mental, physical, and social phenomena. The book decodes healing, dealing with health, illness and therapy by emphasizing the first-person experience as well as objective events. It allows readers to follow the energy-information flows through and between embodied minds and to see how they form physiological functions such as our emotions and narratives. (shrink)

This paper responds to a proposal for an intersectional approach to the clinical encounter between patient and medical provider. We agree that an intersectional framework offers new insights and information in the clinical encounter. Intersectionality involves awareness of the physician-patient dynamic, and understanding the various privileges and disadvantages of all parties involved, at a micro and macroscopic level. Yet, this analysis alone is insufficient to aid in the clinical encounter and risks harm. We worry about a clinician making assumptions about (...) her patient’s race, gender, economic status, and how these influence the patient’s own views of her life and health. We argue that a narrative supplement is a necessary element of intersectional clinical encounters. Prioritizing patient narrative curtails assumptions, builds trust, and improves care. (shrink)