A large body of experimental evidence in the empirical sciences shows that writing about life experiences can be beneficial for mental and physical health. While empirical data regarding the health benefits of writing interventions have been collected in numerous studies in psychology and biomedicine, this literature has remained almost entirely disconnected from scholarship in the humanities and cognitive neuropsychology. In this paper, I review the literature from psychological and biomedical writing interventions, connect these findings to views from philosophy, cognitive neuropsychology (...) and narratology and argue that examining established regularities in how narratives are structured can shed further light on the psychological processes engaged during writing interventions. In particular, I argue that the narratological concept of conflict can be applied to resolve patterns of seemingly conflicting empirical findings in psychological studies. More generally, I propose that an interdisciplinary perspective can provide a broader theoretical basis for understanding the psychological processes underlying the health benefits of autobiographical writing and provide directions for future research in psychology and biomedicine. (shrink)

Gilbert et al. argue that the concerns about the influence of Deep Brain Stimulation on – as they lump together – personality, identity, agency, autonomy, authenticity and the self are due to an ethics hype. They argue that there is only a small empirical base for an extended ethics debate. We will critically examine their claims and argue that Gilbert and colleagues do not show that the identity debate in DBS is a bubble, they in fact give very little evidence (...) for that. Rather they show the challenges of doing research in a field that is stretched out over multiple disciplines. In that sense their paper is an important starting point for a discussion on methodology and offers valuable lessons for a future research agenda. (shrink)

Contributing to renewed scholarly interest in R. D. Laing and his circle, and in the radical therapeutic community of Kingsley Hall, London, this article offers the first article-length reading of Mary Barnes’ and Joseph Berke’s Mary Barnes: Two Accounts of a Journey through Madness. This text offers views of anti-psychiatry ‘on the ground’ that critique the 1960s utopianism of Laing’s championing of madness as a metanoic, quasi-psychedelic voyage. Barnes’ story, too, reveals tensions within the anti-psychiatric movement. Moving beyond existing criticism (...) of the text, Barnes, it is argued here, emerges as far more than an exemplary patient, victim or anti-psychiatric puppet. Particular attention is paid in this reading of Two Accounts to the following: the ways in which the spiritually inclined Barnes and the psychoanalytic Berke differ in this dual narrative text; the ways in which each differs from Laing; the metaphor of the journey; and the setting of Barnes’ story in the often conflicted, experimental household of Kingsley Hall. (shrink)

Narrative medicine explores the stories that patients tell; this paper, conversely, looks at some of the stories that patients are told. The paper starts by examining the ‘story’ told by the Shambaa people of Tanzania to explain the bubonic plague and contrasts this with the stories told by Ghanaian communities to explain lymphatic filariasis. By harnessing insights from memory studies, these stories’ memorability is claimed to be due to their use mnemonic devices woven into stories. The paper suggests that stories (...) can be unpatronising, informative, and appropriate vehicles for communicating medical information to all age groups across all cultures. (shrink)

In this article we explore how diagnostic and therapeutic technologies shape the lived experiences of illness for patients. By analysing a wide range of examples, we identify six ways that technology can (trans)form the experience of illness (and health). First, technology may create awareness of disease by revealing asymptomatic signs or markers (imaging techniques, blood tests). Second, the technology can reveal risk factors for developing diseases (e.g., high blood pressure or genetic tests that reveal risks of falling ill in the (...) future). Third, the technology can affect and change an already present illness experience (e.g., the way blood sugar measurement affects the perceived symptoms of diabetes). Fourth, therapeutic technologies may redefine our experiences of a certain condition as diseased rather than unfortunate (e.g. assisted reproductive technologies or symptom based diagnoses in psychiatry). Fifth, technology influences illness experiences through altering social-cultural norms and values regarding various diagnoses. Sixth, technology influences and changes our experiences of being healthy in contrast and relation to being diseased and ill. This typology of how technology forms illness and related conditions calls for reflection regarding the phenomenology of technology and health. How are medical technologies and their outcomes perceived and understood by patients? The phenomenological way of approaching illness as a lived, bodily being-in-the-world is an important approach for better understanding and evaluating the effects that medical technologies may have on our health, not only in defining, diagnosing, or treating diseases, but also in making us feel more vulnerable and less healthy in different regards. (shrink)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

This in-depth qualitative study considered how women from two different generations came to understand birth in the context of their own experience but also in the milieu of other women’s stories. For the purposes of this thesis the birth story encompassed personal oral stories as well as media and other representations of contemporary childbirth, all of which had the potential to elicit emotional responses and generate meaning in the interlocutor. The research utilised a hermeneutic phenomenological approach underpinned by the philosophies (...) of Heidegger and Gadamer. This methodology allowed the significance of the experience of engaging with stories to be grasped, and in-depth insights into the meanings and lived experience for women of the phenomenon to be made. Twenty participants were purposively selected, recruited and interviewed. In phase one ten women who were expecting their first baby in 2013 were recruited in order to explore how they understood birth prior to the event and in the light of other women’s stories. Birth stories were revealed as one of many ‘voices’ offering ‘advice’ to women about birth. The women also talked about classes they had attended, books they had read, websites and online forums they had accessed, as well as television programmes and films they had watched. The conversations with the first cohort of women led to further questions about whether the information gleaned from media and virtual birth story mediums creates meaningful knowledge about birth for women. The second phase evolved from this thinking. In phase two interviews with an older cohort of women were undertaken to determine whether women from a different era were more able to translate knowledge into meaning. This was based on the belief that, for this generation of women, stories were mediated by personal contact and not though virtual technologies as in the previous generation of women. Phenomenological conversations with the participants took place in the iterative circle of reading, writing and thinking. This revealed the experience of ‘being-in-the-world’ of birth for the two generations of women and the way of communicating within that world. From a Heideggerian perspective, the birth story was constructed through ‘idle talk’ and took place across a variety of media accessed by women, as well as through face to face conversations. Five central and interrelated interpretive findings emerged. Firstly the stories the women engaged with, had a significant role to play in their understanding and expectations of birth. The ‘norm’ as portrayed in the stories circulating in 2013, for instance, was one which perpetuated what one participant described as the ‘drama of birth’. Secondly, the modern ‘landscape’ of birth created and perpetuated fear of childbirth for many of the women. The stories shared were lacking in detail about women’s lives, and did not necessarily help them to become ‘knowers’ and gain wisdom about birthing. Thirdly, the women birthing in the present day were overloaded with information amassed in an attempt to manage their anxieties about birth as well as to fit the role of the informed patient, and demonstrate their competency as mothers. Fourthly the cultural and spiritual significance of birth was not shared in the circulating stories in either generation. Finally, some of the birthing women felt secure in the ‘system’ of birth as constructed, portrayed and sustained in the stories widely circulated. The data revealed that the lifeworld of birth being sustained in stories was one of product and process, concentrating on the stages and progression of labour and the birth of a healthy baby as the only significant outcome. Taken as a whole this thesis revealed that the information gleaned from birth stories did not in fact create meaningful knowledge and understanding about birth for these women. The study is unique in that no other published research has explicitly identified the premise of the ‘modern birth story’ or the notion of ‘idle talk’ in relation to childbirth. Further no other study has considered the phenomenon of engaging with these types of stories whilst pregnant. This study reveals how engaging with the ‘modern birth story’ and the ‘idle talk’ of birth may influence women’s expectations and consequent experience of birth. (shrink)

The increased complexity of health information management sows the seeds of inequalities between health care stakeholders involved in the production and use of health information. Patients may thus be more vulnerable to use of their data without their consent and breaches in confidentiality. Health care providers can also be the victims of a health information system that they do not fully master. Yet, despite its possible drawbacks, the management of health information is indispensable for advancing science, medical care and public (...) health. Therefore, the central question addressed by this paper is how to manage health information ethically? This article argues that Paul Ricœur’s ‘‘little ethics’’, based on his work on hermeneutics and narrative identity, provides a suitable ethical framework to this end. This ethical theory has the merit of helping to harmonise self-esteem and solicitude amongst patients and healthcare providers, and at the same time provides an ethics of justice in public health. A matrix, derived from Ricœur’s ethics, has been developed as a solution to overcoming possible conflicts between privacy interests and the common good in the management of health information. (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)

In this paper we argue that ill persons are particularly vulnerable to epistemic injustice in the sense articulated by Fricker. Ill persons are vulnerable to testimonial injustice through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies. Ill persons are also vulnerable to hermeneutical injustice because many aspects of the experience of illness are difficult to understand and communicate and this often owes to gaps in collective hermeneutical resources. We then argue (...) that epistemic injustice arises in part owing to the epistemic privilege enjoyed by the practitioners and institutions of contemporary healthcare services—the former owing to their training, expertise, and third-person psychology, and the latter owing to their implicit privileging of certain styles of articulating and evidencing testimonies in ways that marginalise ill persons. We suggest that a phenomenological toolkit may be part of an effort to ameliorate epistemic injustice. (shrink)

This paper considers the view that medicine is both “science” and “art.” It is argued that on this view certain clinical knowledge – of patients’ histories, values, and preferences, and how to integrate them in decision-making – cannot be scientific knowledge. However, by drawing on recent work in philosophy of science it is argued that progress in gaining such knowledge has been achieved by the accumulation of what should be understood as “scientific” knowledge. I claim there are varying degrees of (...) objectivity pertaining to various aspects of clinical medicine. Hence, what is often understood as constituting the “art” of medicine is amenable to objective methods of inquiry, and so, may be understood as “science”. As a result, I conclude that rather than endorse the popular philosophical distinction between the art and science of medicine, in the future a unified, multifaceted epistemology of medicine should be developed to replace it. (shrink)

This article develops a phenomenological exploration of chronic pain from a first-person perspective that can serve to enrich the medical third-person perspective. The experience of chronic pain is found to be a feeling in which we become alienated from the workings of our own bodies. The bodily-based mood of alienation is extended, however, in penetrating the whole world of the chronic pain sufferer, making her entire life unhomelike. Furthermore, the pain mood not only opens up the world as having an (...) alien quality, it also makes the world more lonesome and poor by forcing the sufferer to attend to the workings of her own body. To suffer pain is to find oneself in a situation of passivity in relation to the hurtful experiences one is undergoing. In making the body and the world more unhomelike places to be in, pain also tends to rob a person of her language. Severe pain is hard to describe because it pushes the person towards the borderlines of imaginable experience and because it makes it hard to see any meaning and purpose in the situation one has been forced into. The analysis of chronic pain in the article is guided by the attempts made by Maurice Merleau-Ponty, Jean-Paul Sartre, and Martin Heidegger to understand the nature of human embodiment and existence, and also by descriptions of chronic pain found in the Swedish author Lars Gustafsson’s novel The Death of a Beekeeper. (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 this paper, we describe the value and philosophy of lifeworld-led care. Our purpose is to give a philosophically coherent foundation for lifeworld-led care and its core value as a humanising force that moderates technological progress. We begin by indicating the timeliness of these concerns within the current context of citizen-oriented, participative approaches to healthcare. We believe that this context is in need of a deepening philosophy if it is not to succumb to the discourses of mere consumerism. We thus (...) revisit the potential of Husserl’s notion of the lifeworld and how lifeworld-led care could provide important ideas and values that are central to the humanisation of healthcare practice. This framework provides a synthesis of the main arguments of the paper and is finally expressed in a model of lifeworld-led care that includes its core value, core perspectives, relevant indicative methodologies and main benefits. The model is offered as a potentially broad-based approach for integrating many existing practices and trends. In the spirit of Husserl’s interest in both commonality and variation, we highlight the central, less contestable foundations of lifeworld-led care, without constraining the possible varieties of confluent practices. (shrink)

Spirituality and storytelling can be resources in aging successfully and in dying well given the constraints of modern day Western culture. This paper explores the relationship of aging to time and the dynamic process of the life course and discusses issues related to confronting mortality, including suffering, finitude, spirituality, and spiritual closure in regard to death. And, finally, the role of narrative in this process is taken up.

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

This article draws on recent research in the medical humanities to analyze two contemporary Chinese films: Zhang Yuan's Sons (1996) and Zhou Xiaowen's The Common People (1998). By portraying psychic and physical anguish in ways that refuse to divorce biology from culture, such films offer rare moral dialogues on biomedical issues and contribute a cross-cultural perspective invaluable to the task of responding to illness and suffering.

Personal, creative writing as a process for reflection on patient care and socialization into medicine (“reflective writing”) has important potential uses in educating medical students and residents. Based on the authors’ experiences with a range of writing activities in academic medical settings, this article sets forth a conceptual model for considering the processes and effects of such writing. The first phase (writing) is individual and solitary, consisting of personal reflection and creation. Here, introspection and imagination guide learners from loss of (...) certainty to reclaiming a personal voice; identifying the patient’s voice; acknowledging simultaneously valid yet often conflicting perspectives; and recognizing and responding to the range of emotions triggered in patient care. The next phase (small-group reading and discussion) is public and communal, where sharing one’s writing results in acknowledging vulnerability, risk-taking, and self-disclosure. Listening to others’ writing becomes an exercise in mindfulness and presence, including witnessing suffering and confusion experienced by others. Specific pedagogical goals in three arenas-professional development, patient care and practitioner well-being – are linked to the writing/reading/listening process. The intent of presenting this model is to help frame future intellectual inquiry and investigation into this innovative pedagogical modality. (shrink)

We explore briefly Foucault's ideas about the care of the self, creating ourselves and what he meant by ethics. We then examine the work of five artists–Mark Rothko, Cindy Sherman, Helena Hietanen, Samuel Beckett, and Betty Goodwin–to help us begin to think very differently about illness and human suffering. Taking our lead from Beckett, we regard reason as being given too much responsibility for the work of a caring knowledge, and that it is through the arts that new ideas about (...) bioethics can emerge. (shrink)

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

It is commonly believed that disability disqualifies people from full participation in or recognition by society. This view is rooted in eugenic logic, which tells us that our world would be a better place if disability could be eliminated. In opposition to this position, I argue that that disability is inherent in the human condition and consider the bioethical question of why we might want to conserve rather than eliminate disability from our shared world. To do so, I draw together (...) an eclectic, rather than systematic, configuration of counter-eugenic arguments for conserving disability. The idea of preserving intact, keeping alive, and even encouraging to flourish denoted by conserve suggests that disabilities would be better understood as benefits rather than deficits. I present, then, a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider here is the cultural and material contributions disability offers to the world. (shrink)

This paper explores evolving treatments for hysteria in the eighteenth century by examining a selection of works by both physician-writers and educated literary women. The treatments I identify—which range from aggressive bloodlettings, diets, and beatings, to exercise, fresh air, and writing cures—reveal a unique culture of therapy in which female sufferers and doctors exert an influence on one another's notions of what constitutes appropriate management of women's mental illness. A scrutiny of this exchange of ideas suggests that female patients were (...) not simply oppressed and silenced by male practitioners; rather, their collective voice, intellect, and expertise helped to form progressive treatments for eighteenth-century hysteria. (shrink)

A brain death case is presented and reinterpreted using the narrative approach. In the case, two Japanese parents face a dilemma about whether to respect their daughter’s desire to donate organs even though, for them, it would mean literally killing their daughter. We argue that the ethical dilemma occurred because the parents were confronted with two conflicting narratives to which they felt a “narrative responsibility,” namely, the responsibility that drives us to tell, retell, and coauthor the (often unfinished) narratives of (...) loved ones. We suggest that moral dilemmas arise not only from conflicts between moral justifications but also from conflicts between narratives and human relationships. (shrink)

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

Once a term used primarily by moral philosophers, “moral distress” is increasingly used by health professionals to name experiences of frustration and failure in fulfilling moral obligations inherent to their fiduciary relationship with the public. Although such challenges have always been present, as has discord regarding the right thing to do in particular situations, there is a radical change in the degree and intensity of moral distress being expressed. Has the plight of professionals in healthcare practice changed? “Plight” encompasses not (...) only the act of pledging, but that of predicament and peril. The author claims that health professionals are increasingly put in peril by healthcare reform that undermines their efficacy and jeopardizes ethical engagement with those in their care. The re-engineering of healthcare to give precedence to corporate and commercial values and strategies of commodification, service rationing, streamlining, and measuring of “efficiency,” is literally demoralizing health professionals. Healthcare practice needs to be grounded in a capacity for compassion and empathy, as is evident in standards of practice and codes of ethics, and in the understanding of what it means to be a professional. Such grounding allows for humane response to the availability of unprecedented advances in biotechnological treatments, for genuine dialogue and the raising of difficult, necessary ethical questions, and for the mutual support of health professionals themselves. If healthcare environments are not understood as moral communities but rather as simulated marketplaces, then health professionals’ moral agency is diminished and their vulnerability to moral distress is exacerbated. Research in moral distress and relational ethics is used to support this claim. (shrink)

Evaluation of quality of life, psychic and bodily well-being is becoming increasingly important in oncology aftercare. This type of assessment is mainly carried out by medical psychologists. In this paper I will seek to show that body experience valuation has, besides its psychological usefulness, a normative and practical dimension. Body experience evaluation aims at establishing the way a person experiences and appreciates his or her physical appearance, intactness and competence. This valuation constitutes one’s ‘body image’. While, first, interpreting the meaning (...) of body image and, second, indicating the limitations of current psychological body image assessment, I argue that the normative aspect of body image is related to the experience of bodily wholeness or bodily integrity. Since this experience is contextualized by a person’s life story, evaluation should also focus on narrative aspects. I finally suggest that the interpretation of body experience is not only valuable to assess a person’s quality of life after treatment, but that it can also be useful in counseling prior to interventions, since it can support patients in making decisions about interventions that will change their bodies. To apply this type of evaluation to oncology practice, a rich and tailored vocabulary of body experiences has to be developed. (shrink)

Depression is a debilitating condition, but it can also be an awakening: one that calls attention to what is termed dimensions of expertise that come with the spatial and temporal structure of human beings and that are necessary for offering some counter to the debilitating force of the condition. Expertise has a significant ontological status: it is directly associated with who we are as creatures who can hear and respond to the call of conscience, desire acknowledgment and have an obligation (...) to share this life-giving gift with others, and whose very being is characterized by a perfectionist impulse to better its standing in the world. A story concerned with medical expertise is offered to illustrate in concrete terms these specific matters. (shrink)

The purpose of this paper is to explore the role that modernism in the arts might have in articulating the uselessness and incomprehensibility of physical and mental suffering. It is argued that the experience of illness is frequently resistant to interpretation, and as such, it will be suggested, to conventional forms of artistic expression and communication. Conventional narratives, and other beautiful or conventionally expressive aesthetic structures, that presuppose the possibility and desirability of an harmonious and meaningful resolution to conflicts and (...) tensions, may fundamentally misrepresent the patient
s experience. By drawing on the work of Emmanuel Levinas (on useless suffering) and the aesthetic theories of Nietzsche and T. W. Adorno, it will be argued first that a faith in the possibility of harmonious resolution of suffering is misplaced and does violence to the experience of suffering. Second, it will be argued that the expression of suffering lies not in finding words, images or sounds that communicate the experience of that suffering to others, but rather in the persistent and radical disruption of any illusion of meaning and coherence that might be imposed upon the experience, so that the very possibility of communication is also disrupted. (shrink)

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

This paper describes the lifeworld of one individual, Ann, in an attempt to elucidate the existential impact of early stage multiple sclerosis. Drawing on Ann's own reflections captured in a relatively unstructured interview, I construct a narrative around her first year of living with the diagnosis. Then, existential-phenomenological analysis reveals how Ann's life - lived in and through a particular body and lifeworld context - is disrupted. The unity between her body and self can no longer be taken for granted. (...) The existential possibilities inherent in her lived body are diminished and have to be renegotiated. Her sense of identity, project, relations with others and present/future plans are threatened. Ann's illness is encountered in the context of her life activities and relationships. This is the intertwining of body, self and world. To live with multiple sclerosis is to experience a global sense of disorder - a disorder which incorporates a changed relation with one's body, a transformation in the surrounding world, a threat to the self, and a change in one's relation to others. (shrink)

In 1785, George Washington described a “knowing farmer” as “one who can convert every thing he touches into manure, as the first transmutation towards Gold.” With these words, Washington linked the “knowing farmer” to the alchemist who endeavored to transform base metals into gold with the aid of a philosopher's stone. In each instance, the challenge was to convert raw materials into something new and precious.Today, the “knowing bioethicist” is in a similar position. American bioethics harbors a variety of ethical (...) methods that emphasize different ethical factors, including principles, circumstances, character, interpersonal needs, and personal meaning. Each method reflects an important aspect of ethical experience, adds to the others, and enriches the ethical imagination. (shrink)

This article isolates ten prepositions, which constitute the undercurrent paradigm of contemporary discourse of health disease and medicine. Discussion of the interrelationship between those prepositions leads to a systematic refutation of this paradigm. An alternative set is being forwarded. The key notions of the existing paradigm are that health is the natural condition of humankind and that disease is a deviance from that nature. Natural things are harmonious and healthy while human made artifacts are coercive interference with natural balance. It (...) is suggested that the current paradigm is influenced by the world of finances and by instrumental reason. The alternative model suggests that human nature cannot be delineated. Humans fashion their own selves and nature by artificial means, medicine among them. The article discusses the implications of the paradigm adapted in various scholarly and popular debates such as the use of sex hormones for contraception, the care of the elderly, holistic medicine and distributive justice in health care. Medicine is not an isolated or a privileged realm. There is no unique entitlement to health care. It is always part of a broader agenda of social values and institutions. A open view of human societies, values and practices as they are situated within concrete material conditions is the platform required for an integrative and creative discourse of health care. (shrink)

Representations of breast cancer are examined in three popular women's periodicals targeting African American readers: Ebony, Essence, and Black Elegance. The researcher focuses specifically on representations that reflect certain ideas/ideals about the sharing and creating of information about the disease and related issues, such as health care and body image. Magazine selections are analyzed and critiqued according to the epistemological principles outlined by Patricia Hill Collins in Black Feminist Thought. The author calls for further research into how and why particular (...) social and cultural groups consume information about health and illness in particular ways. (shrink)

One of the major tasks of medical educators is to help maintain and increase trainee empathy for patients. Yet research suggests that during the course of medical training, empathy in medical students and residents decreases. Various exercises and more comprehensive paradigms have been introduced to promote empathy and other humanistic values, but with inadequate success. This paper argues that the potential for medical education to promote empathy is not easy for two reasons: a) Medical students and residents have complex and (...) mostly unresolved emotional responses to the universal human vulnerability to illness, disability, decay, and ultimately death that they must confront in the process of rendering patient care b) Modernist assumptions about the capacity to protect, control, and restore run deep in institutional cultures of mainstream biomedicine and can create barriers to empathic relationships. In the absence of appropriate discourses about how to emotionally manage distressing aspects of the human condition, it is likely that trainees will resort to coping mechanisms that result in distance and detachment. This paper suggests the need for an epistemological paradigm that helps trainees develop a tolerance for imperfection in self and others; and acceptance of shared emotional vulnerability and suffering while simultaneously honoring the existence of difference. Reducing the sense of anxiety and threat that are now reinforced by the dominant medical discourse in the presence of illness will enable trainees to learn to emotionally contain the suffering of their patients and themselves, thus providing a psychologically sound foundation for the development of true empathy. (shrink)

There is a strong presumption that mental disorder injures a person's autonomy, understood as a set of capacities and as an ideal condition of agency which is worth striving for. However, recent multidimensional approaches to autonomy have revealed a greater diversity in ways of being autonomous than has previously been appreciated. This presumption, then, risks wrongly dismissing variant, neuro-atypical sorts of autonomy as non-autonomy. This is both an epistemic error, which impairs our understanding of autonomy as a phenomenon, and a (...) moral error, which withholds recognition and respect that autonomous agents are due. I argue that careful attention to the different 'shapes' of agent's autonomy reveals that there are indeed distinctive kinds of neuro-atypical autonomy that are widely mistaken for non-autonomy. This project argues for two propositions. First, that there is a kind of autonomy, with a distinctive shape and texture, available to bipolar agents. This is a variant sort of autonomy, but not a defective or deficient sort. It is the ideal of autonomy that it is worth bipolar agents striving for, given the range and intensity of experiences that they will have to confront. Whilst bipolar autonomy will look unlike more neurotypical kinds of autonomy, it continues to be owed recognition. The second proposition is that we should understand the ideal of autonomy to be both pluralist and highly context sensitive. Given the range of starting points from which agents will strive to an ideal of autonomy, there will be some variation in the ideals worth striving for. The variation in ideals will reflect the existential realities they are local to. Theory of autonomy must be adapted to recognise bipolar, and other neuro-atypical, kinds of autonomy, and to reflect this wider pluralism. These propositions will be argued for with careful attention to the experiences and agency of people living with bipolar, or related, disorders. Understanding the ways that manic or depressive episodes, and the shifts between them, alter and apply pressure to our agency will inform an account of the distinctively bipolar autonomy that can be built on top of it. (shrink)

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence (...) of persistent or recurrent disease; a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments. (shrink)

The ongoing trauma of COVID-19 will no doubt mark entire generations in ways inherent in an unmanaged global pandemic. The question that I ask is why this ongoing trauma seems so particularly profound and so uniquely shattering, and whether there is anything that we could do now, while still in the midst of disaster, to begin the process of social and moral repair? I will begin by considering the trauma of isolation with unknown time-horizons, and argue that it not only (...) damages our experiences as social selves, but its languages of overwhelming grief rob us of hope of self-restoration. Second, I will examine some reasons for the “why us”-type of trauma experienced by so many in the Global North, and suggest that such laments are predicated on the misalignment among our socio-historical awareness, disaster-imagination, and our sense of ourselves as uniquely unfortunate. Finally, relying in part on Viktor Frankl’s notion of “tragic optimism,” I conclude by considering how we may begin to reconsider our traumas as not just endings of what is, but beginnings of what still might be —as repair without a master plan. (shrink)

The lived body has structures of ability built up over time through habit. Serious illness, injury, and incapacity can disrupt these capacities, and thereby, one’s relationship to the body, and to time itself. This paper focuses attention on a series of healing strategies individuals then employ on the “chessboard” of possibilities intrinsic to lived embodiment. This can include restoring past abilities (pointing to the future to recreate the past); and/or transforming one’s bodily structure or use-patterns, or the external environment, to (...) compensate. With many conditions, including progressive aging, no full rehabilitation is possible. Nevertheless, one can also seek consolation, richness, or hope by remembering the past; anticipating the future; or presencing, that is, living fully in the now. Insofar as past, present, and future are interwoven in one’s life experience, many also meet adversity by a life-story revision, constructing a new narrative to render events meaningful. Some also access a sense of transpersonal timelessness, whether through anticipation of an afterlife, or a sense of the eternal present. There is a literature on the adaptive coping mechanism used by the chronically ill, but with its diverse patient populations, methodologies, and categories, it has proved difficult to systematize. This article suggests that the structures of lived embodiment, as explored by phenomenology, provide a way to understand the modes of wholeness individuals access over time, and in relation to time—what is here termed chronic healing. (shrink)

We all know that we have and are our bodies. But might it be possible to leave this common place? In the present article we try to do this by attending to the way we do our bodies. The site where we look for such action is that of handling the hypoglycaemias that sometimes happen to people with diabetes. In this site it appears that the body, active in measuring, feeling and countering hypoglycaemias is not a bounded whole: its boundaries (...) leak. Bits and pieces of the outside get incorporated within the active body; while the centre of some bodily activities is beyond the skin. The body thus enacted is not self-evidently coherent either. There are tensions between the body’s organs; between the control under which we put our bodies and the erratic character of their behaviour; and between the various needs and desires single bodies somehow try to combine. Thus to say that a body is a whole, or so we conclude, skips over a lot of work. One does not hang together as a matter of course: keeping oneself together is something the embodied person needs to do. The person who fails to do so dies. (shrink)

In this article, we present an analysis of bodily integrity in hand transplants from a phenomenological narrative perspective, while drawing on two contrasting case stories. We consider bodily integrity as the subjective bodily experience of wholeness which, instead of referring to actual bodily intactness, involves a positive identification with one’s physical body. Bodily mutilations, such as the loss of a hand, may severely affect one’s bodily integrity. A possible restoration of one’s experience of wholeness requires a process of re-identification. Medical (...) interventions, such as a hand transplant, may improve the possibility of a successful re-identification. However, since the experience of wholeness does not refer simply to physical intactness or impairment, the choice for medical intervention should not be based merely upon the degree of physical mutilation. It should also be based upon the degree to which a person fails in re-identifying with his or her mutilated body. We argue that a normalizing operation is only ethically justifiable if the intervention enables the person to be the body he or she has. (shrink)

This essay argues that Berger and Mohr’s A Fortunate Man (1967) – comprising social observation and photographs of the rural practitioner, Dr. Sassall and his patients – enacts an embodied, intersubjective empathy called “pain-work.” The book enacts “pain-work” through two strategies. Firstly, by conflating three ways of seeing – Berger’s observation, Mohr’s photography, and Sassall’s medical gaze – it shows that the clinical encounter embodies objective vision through intersubjective pain. Secondly, it employs the concepts of recognition and witnessing to show (...) how the subjectivity of the physician is distributed in his community. Thus, Berger and Mohr witness Sassall’s witnessing of his patients; even as Sassall and his patients are constituted intersubjectively, so too are Berger, Mohr, and Sassall. (shrink)

This essay brings together critical perspectives from the discrete traditions of artists’ books and the medical humanities to examine artists’ books by three contemporary artists – Penny Alexander, Martha A. Hall and Amanda Watson-Will – that treat experiences of illness and wellbeing. Through its focus on a multimodal and multisensory art form that has allegiances with, but is not reduced to, narrative, the essay adds to recent calls to rethink key assumptions of illness narrative study and to challenge utilitarian approaches. (...) In particular, it draws attention to the aesthetic and imaginative elements of illness communication by exploring how artists’ books represent lived experiences in a distinctively palpable way and offer an “intimate authority” that extends beyond narrative legitimacy or a form of struggle against the medical gaze. By interrogating narrative’s dominance in medical humanities research, the essay further expands awareness of illness experiences that resist conventional forms of representation (such as chronic illness), and of alternative reflective practices within healthcare education that encourage engagement with both mind and body. (shrink)

Bioethics has increasingly become a standard part of medical school education and the training of healthcare professionals more generally. This is a promising development, as it has the potential to help future practitioners become more attentive to moral concerns and, perhaps, better moral reasoners. At the same time, there is growing recognition within bioethics that nonideal theory can play an important role in formulating normative recommendations. In this chapter we discuss what this shift toward nonideal theory means for ethical curricula (...) within healthcare education. In particular, we contend that more attention to the particularities of historical and social context needs to be incorporated into bioethics training. To make this argument, we focus on two examples: teaching units on race and medicine and those that focus on stigma and coercion in mental health. For both, we show how a pedagogical approach in which educators focus on social injustice could influence how practitioners engage in ethics in the clinic. This chapter, then, demonstrates what a commitment to nonideal theory can mean practically when it comes to bioethics education. (shrink)