Phenomenology of illness has grown increasingly popular in recent times. However, the most prominent phenomenologists of illness defend a psychologizing notion of phenomenology, which argues that illness is primarily constituted by embodied experiences, feelings, and emotions of suffering, alienation etc. The article argues that this gives rise to three issues that need to be addressed. (1) How is the theory of embodiment compatible with the strong distinction between disease and illness? (2) What is the difference between problematic embodiment and illness? (...) (3) How is existential edification, that illness can give rise to according to the phenomenologists, to be understood? The article then engages in an analysis of Heidegger’s and Waldenfels’ phenomenology with the ambition of developing a notion of existence, which can transgress the psychologization of illness. Rather than arguing that illness is constituted by experiences of suffering and alienation, it emphasizes that broaches upon conatively guided activities constitute illness. (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)

Research in phenomenology has benefitted from using exceptional cases from pathology and expertise. But exactly how are we to generate and apply knowledge from such cases to the phenomenological domain? As researchers of cerebral palsy and musical absorption, we together answer the how question by pointing to the resource of the qualitative interview. Using the qualitative interview is a direct response to Varela’s call for better pragmatics in the methodology of phenomenology and cognitive science and Gallagher’s suggestion for phenomenology to (...) develop its methodology and outsource its tasks. We agree with their proposals, but want to develop them further by discussing and proposing a general framework that can integrate research paradigms of the well-established disciplines of phenomenological philosophy and qualitative science. We give this the working title, a “phenomenological interview”. First we describe the what of the interview, that is the nature of the interview in which one encounters another subject and generates knowledge of a given experience together with this other subject. In the second part, we qualify why it is worthwhile making the time-consuming effort to engage in a phenomenological interview. In the third and fourth parts, we in general terms discuss how to conduct the interview and the subsequent phenomenological analysis, by discussing the pragmatics of Vermersch’s and Petitmengin’s “Explicitation Interview”. (shrink)

This article examines the philosophical role of illness. It briefly surveys the philosophical role accorded to illness in the history of philosophy and explains why illness merits such a role. It suggests that illness modifies, and thus sheds light on, normal experience, revealing its ordinary and therefore overlooked structure. Illness also provides an opportunity for reflection by performing a kind of suspension (epoché) of previously held beliefs, including tacit beliefs. The article argues that these characteristics warrant a philosophical role for (...) illness. While the performance of most philosophical procedures is volitional and theoretical, however, illness is uninvited and threatening, throwing the ill person into anxiety and uncertainty. As such it can be viewed as a radical philosophical motivation that can profoundly alter our outlook. The article suggests that illness can change the ways in which we philosophise: it may shape philosophical methods and concerns and change one's sense of salience and conception of philosophy. (shrink)

The issue of how to incorporate the individual's first‐hand experience of illness into broader medical understanding is a major question in medical theory and practice. In a philosophical context, phenomenology, with its emphasis on the subject's perception of phenomena as the basis for knowledge and its questioning of naturalism, seems an obvious candidate for addressing these issues. This is a review of current phenomenological approaches to medicine, looking at what has motivated this philosophical approach, the main problems it faces and (...) suggesting how it might become a useful philosophical tool within medicine, with its own individual, but interrelated, contribution to make to current medical debates. After the general background, there is a brief summary of phenomenological ideas and their current usage in a medical context. Next is a critique of four key claims within current phenomenological medical works, concerning both the role phenomenology plays and the supposedly clear divide between phenomenology and other approaches. There are significant problems within these claims, largely because they overlook the complexity of the questions they consider. Finally, there is some more in‐depth examination of phenomenology itself and the true complexity of phenomenological debate concerning subjectivity. The aim is to show that it will be both more productive and truer to phenomenology itself, if we use phenomenology as a philosophical method for explicating and gaining deeper understanding of complex and fundamental problems, which are central to medicine, rather than as providing simple, but flawed solutions. (shrink)

Based on the distinction between living body and lived body, we describe the disease-subject as representing the impact of disease on the existential life-project of the subject. Traditionally, an individual's subjectivity experiences disorders of the body and describes ensuing pain, discomfort and unpleasantness. The idea of a disease-subject goes further, representing the lived body suffering existential disruption and the possible limitations that disease most probably will impose. In this limit situation, the disease-subject will have to elaborate a new life-story, a (...) new character or way-of-being-in-the-world, it will become a different subject. (shrink)

This paper aims at explicating the role of the connections and interactions between health, well being and beauty. The primary goal of all medical approaches, including the classic biomedical and humanistic or humane approaches, is to restore or create health, whereby medical approaches that include prevention go beyond the mere restoration of health to include the preservation of health. Equating well-being and thus health with a largely self-determined and joyful life, then not only does a healthy life become a beautiful (...) life, a beautiful life also becomes a healthy life! By bringing Beauty into the health discourse, we are entering the field of aesthetics in general and social aesthetics in particular. As the beautiful is not just a decorative element of life but a genuine source of human strength, it gives us the strength and power we need to implement and achieve all that we then experience as “well-being” and that is called a healthy life. Therefore a further development of a human-based medicine is needed, a medicine that focuses not on a disease construct but which places a human being as a whole, with all his potential and limitations at the heart of diagnostic and therapeutic efforts. The noblest therapeutic goal of this kind of medicine can only be the restoration or preservation of a comprehensive state of health in the sense of complete physical, mental and social well-being, in the sense of opening up the possibility for a mostly autonomous and joyful life. (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 article studies the phenomenology of chronic illness in light of phenomenology’s insights into ecstatic temporality and freedom. It shows how a chronic illness can, in lived experience, manifest itself as a disturbance of our usual relation to ecstatic temporality and thence as a disturbance of freedom. This suggests that ecstatic temporality is related to another sort of time—“provisional time”—that is in turn rooted in the body. The article draws on Merleau-Ponty’s Phenomenology of Perception and Heidegger’s Being and Time , (...) shedding light on the latter’s concept of ecstatic temporality. It also discusses implications for self-management of chronic illness, especially in children. (shrink)

Who is the human being? A powerful, enhanceable biological organism, which techniques and artifacts can augment or a disembodied spirit damned to be influenced by its fragile body? In Defense of the Human Being accounts for both perspectives existing in the contemporary debate on the human and provides us with an answer: we should conceive of “ … the human person as a physical or embodied being, as a free, self- determining being, and ultimately as an essentially social being connected (...) with others.” (p. 2). Temporality, embodiment, relationality, vulnerability: we need to take into account these features and embrace them, even though this means to accept that we cannot live forever, we cannot rely on machines only, but we have to fulfil our existence. (shrink)

Leading paradigms of clinical ethics consultation closely follow a biomedical model of care. In this paper, we present a theoretical reflection on the underlying biomedical model of disease, how it shaped clinical practices and patterns of ethical deliberation within these practices, and the repercussions it has on clinical ethics consultations for patients with chronic illness. We contend that this model, despite its important contribution to capturing the ethical issues of day-to-day clinical ethics deliberation, might not be sufficient for patients presenting (...) with chronic illnesses and navigating as “lay experts” of their medical condition(s) through the health care system. Not fully considering the sources of personal knowledge and expertise may lead to epistemic injustice within an ethical deliberation logic narrowly relying on a biomedical model of disease. In caring “for” and collaboratively “with” this patient population, we answer the threat of epistemic injustice with epistemic modesty and humility. We will propose ideas about how clinical ethics could contribute to an expansion of the biomedical model of care, so that important aspects of chronic illness experience would flow into clinical-ethical decision-making. (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)

This is the introduction to the inaugural issue of The Journal of Philosophy of Disability.

This article explores the relationship between medicine’s history and its digital present through the lens of the physician-patient relationship. Today the rhetoric surrounding the introduction of new technologies into medicine tends to emphasize that technologies are disturbing relationships, and that the doctor-patient bond reflects a more ‘human’ era of medicine that should be preserved. Using historical studies of pre-modern and modern Western European medicine, this article shows that patient-physician relationships have always been shaped by material cultures. We discuss three activities (...) – recording, examining, and treating – in the light of their historical antecedents, and suggest that the notion of ‘human medicine’ is ever-changing: it consists of social attributions of skills to physicians that played out very differently over the course of history. (shrink)

Ian James Kidd ABSTRACT: This paper presents two challenges faced by many initiatives that try to diversify undergraduate philosophy curricula, both intellectually and demographically. Trade-offs involve making difficult decisions to prioritise some values over others. Backfires involve unintended consequences contrary to the aims and values of diversity initiatives, including ….

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)

Empathy is a topic of continuous debate in the nursing literature. Many argue that empathy is indispensable to effective nursing practice. Yet others argue that nurses should rather rely on sympathy, compassion, or consolation. However, a more troubling disagreement underlies these debates: There’s no consensus on how to define empathy. This lack of consensus is the primary obstacle to a constructive debate over the role and import of empathy in nursing practice. The solution to this problem seems obvious: Nurses need (...) to reach a consensus on the meaning and definition of empathy. But this is easier said than done. Concept analyses, for instance, reveal a profound ambiguity and heterogeneity of the concept of empathy across the nursing literature. Since the term “empathy” is used to refer to a range of perceptual, cognitive, emotional, and behavioral phenomena, the presence of a conceptual ambiguity and heterogeneity is hardly surprising. Our proposal is simple. To move forward, we need to return to the basics. We should develop the concept from the ground up. That is, we should begin by identifying and describing the most fundamental form of empathic experience. Once we identify the most fundamental form of empathy, we will be able to distinguish among the more derivative experiences and behaviors that are addressed by the same name and, ideally, determine the place of these phenomena in the field of nursing. The aim of this article is, consequently, to lay the groundwork for a more coherent concept of empathy and thereby for a more fruitful debate over the role of empathy in nursing. In Part 1, we outline the history of the concept of empathy within nursing, explain why nurses are sometimes warry of adapting concepts from other disciplines, and argue that nurses should distinguish between adapting concepts from applied disciplines and from more theoretical disciplines. In Part 2, we show that the distinction between emotional and cognitive empathy—borrowed from theoretical psychology—has been a major factor in nurses’ negative attitudes toward emotional empathy. We argue, however, that both concepts fail to capture the most fundamental form of empathy. In Part 3, we draw on and present some of the seminal studies of empathy that can be found in the work of phenomenological philosophers including Max Scheler, Edmund Husserl, and Edith Stein. In Part 4, we outline how their understanding of empathy may facilitate current debates about empathy’s role in nursing. (shrink)

A large slice of contemporary phenomenology of medicine has been devoted to developing an account of health and illness that proceeds from the first-person perspective when attempting to understand the ill person in contrast and connection to the third-person perspective on his/her diseased body. A proof that this phenomenological account of health and illness, represented by philosophers, such as Drew Leder, Kay Toombs, Havi Carel, Hans-Georg Gadamer, Kevin Aho, and Fredrik Svenaeus, is becoming increasingly influential in philosophy of medicine and (...) medical ethics is the criticism of it that has been voiced in some recent studies. In this article, two such critical contributions, proceeding from radically different premises and backgrounds, are discussed: Jonathan Sholl’s naturalistic critique and Talia Welsh’s Nietzschean critique. The aim is to defend the phenomenological account and clear up misunderstandings about what it amounts to and what we should be able to expect from it. (shrink)

In this paper I briefly summarize Pellegrino’s phenomenological analysis of the ethics of the physician–patient relationship. In delineating the essential elements of the healing relationship, Pellegrino demonstrates the necessity for health care professionals to understand the patient’s lived experience of illness. In considering the phenomenon of illness, I identify certain essential characteristics of illness-as-lived that provide a basis for developing a rigorous understanding of the patient’s experience. I note recent developments in the systematic delivery of health care that make it (...) difficult for health care professionals to realize Pellegrino’s ethical model of the role of healer. Such developments limit both the physician’s freedom to act on behalf of the patient without the constraint of third parties and the physician’s freedom to act in light of his or her own ethical or religious convictions. Given these difficulties, I note MacIntyre’s call for the development of moral communities, as an alternative to the prevailing culture, and share a first-hand example illustrating how intentional Christian community provides an alternative nurturing context that permits the full development of the healing relationship. (shrink)

In the context of the end of life, many authors point out how the experience of identity is crucial for the well-being of patients with advanced disease. They define this identity in terms of autonomy, control, or dependence, associating these concepts with the sense of personal dignity. From the perspective of the phenomenology of embodiment, Kay Toombs and other authors have investigated the ways disease can impact on the subjective world of patients and have stressed that a consideration of this (...) personal world can promote understanding and recognition of their experience. Based on the findings of qualitative studies of the perception of dignity and autonomy in patients at the end of life, this analysis assesses concepts such as being-in-the-world in illness, embodiment, lived body versus objective body or the gaze of the other from a Toombsian phenomenological perspective. (shrink)

Although by no means mainstream, phenomenological approaches to bioethics and philosophy of medicine are no longer novel. Such approaches take the lived body —as opposed to the body understood as a material, biological object —as their point of departure to offer a more robust understanding of a plurality of experiences that go far beyond those surrounding disease...

In this paper, I argue that Jonathan Glover, a prominent advocate of human genetic engineering, relies on a limited naturalistic account of normal human function in his defense of genetic engineering as a means of decreasing future instances of disability. I show that his concept of disability and the normative argument informed by it in his Choosing Children: Genes, Disability, and Design fails to incorporate the phenomenological dimension of embodiment, and that this dimension should be included in any account of (...) disability and human flourishing. Such inclusion, however, requires us to consider seriously the counterintuitive view that racial minorities are constitutionally disabled in racist societies. (shrink)

There is limited consensus about what constitutes humanly sensitive care, or how it can be sustained in care settings. A new humanised care assessment tool may point to caring practices that are up to the task of meeting persons as humans within busy healthcare environments. This paper describes qualitative development of a tool that is conceptually sensitive to human dimensions of care informed by a life‐world philosophical orientation. Items were generated to reflect eight theoretical dimensions that constitute what makes care (...) feel humanly focused. An action research group process in 2014–2015 with researchers, service users, healthcare professionals in two diverse clinical settings (stroke rehabilitation and dermatology) was used. Feedback on conceptual content, transparency of meaning and readability was then gained from a panel in Sweden and third‐year student nurses in the UK. The tool can be applied to attune staff to human dimensions of care, offering items which point to concrete examples of humanising and dehumanising features of practice in ways that have not yet been fully captured in the caring literature. Based on theoretically led experiential items, with dedicated focus on what makes people feel more, or less than human, it may offer improvement on available assessments of care. (shrink)

This paper considers phenomenological descriptions of health in Gadamer, Heidegger, Merleau-Ponty, and Svenaeus. In these phenomenologies of health, health is understood as a tacit, background state that permits not only normal functioning but also philosophical reflection. Nietzsche’s model of health as a state of intensity that is intimately connected to illness and suffering is then offered as a rejoinder. Nietzsche’s model includes a more complex view of suffering and pain as integrally tied to health, and its language opens up the (...) possibility of many ‘healths,’ providing important theoretical support to phenomenological accounts of the diversity and complexity of health and illness. (shrink)

Ill persons suffer from a variety of epistemically-inflected harms and wrongs. Many of these are interpretable as specific forms of what we dub pathocentric epistemic injustices, these being ones that target and track ill persons. We sketch the general forms of pathocentric testimonial and hermeneutical injustice, each of which are pervasive within the experiences of ill persons during their encounters in healthcare contexts and the social world. What’s epistemically unjust might not be only agents, communities and institutions, but the theoretical (...) conceptions of health that structure our responses to illness. Thus, we suggest that although such pathocentric epistemic injustices have a variety of interpersonal and structural causes, they are also sustained by a deeper naturalistic conception of the nature of illness. (shrink)

The once animated efforts in medical phenomenology to integrate the art and science of medicine (or to humanize scientific medicine) have fallen out of philosophical fashion. Yet the current competing medical discourses of evidencebased medicine and patient-centered care suggest that this theoretical endeavor requires renewed attention. In this paper, I attempt to enliven the debate by discussing theoretical weaknesses in the way the “lived body” has operated in the medical phenomenology literature—the problem of the absent body—and highlight how evidence-based medicine (...) has refigured medical phenomenology’s historical nemesis, “biomedicine.” What we now need is a phenomenology of the embodied subject in the age of evidence-based medicine. (shrink)

Pain is far more than an aversive sensation. Chronic pain, in particular, involves the sufferer in a complex experience filled with ambiguity and paradox. The tensions thereby established, the unknowns, pressures, and oscillations, form a significant part of the painfulness of pain. This paper uses a phenomenological method to examine nine such paradoxes. For example, pain can be both immediate sensation and mediated by complex interpretations. It is a certainty for the experiencer, yet highly uncertain in character. It pulls one (...) to the present but also projects one outward to a feared or desired future. Chronic pain can seem located in the body and/or mind; interior to the self, or an alien other; confined to a particular point and/or radiating everywhere. Such fundamental paradoxes, existential and epistemological, can challenge those living with long-term pain. (shrink)

Diagnoses in medicine are often taken to serve as explanations of patients’ symptoms and signs. This article examines how they do so. I begin by arguing that although some instances of diagnostic explanation can be formulated as covering law arguments, they are explanatory neither in virtue of their argumentative structures nor in virtue of general regularities between diagnoses and clinical presentations. I then consider the theory that medical diagnoses explain symptoms and signs by identifying their actual causes in particular cases. (...) While I take this to be largely correct, I argue that for a diagnosis to function as a satisfactory causal explanation of a patient’s symptoms and signs, it also needs to be supplemented by understanding the mechanisms by which the identified cause produces the symptoms and signs. This mechanistic understanding comes not from the diagnosis itself, but rather from the theoretical framework within which the physician operates. (shrink)

We investigated family members’ lived experience of Parkinson’s disease aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together with PD exploring the kinship (...) within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey. (shrink)

This dissertation contributes to the development of philosophy of disability by drawing on disability studies, feminist philosophy, phenomenology, and philosophy of biology in order to contest epistemic and ontological assumptions about disability within biomedical ethics as well as within philosophical work on the body, demonstrating how philosophical inquiry is radically transformed when experiences of disability are taken seriously. In the first two chapters, I focus on epistemological and ontological concerns surrounding disability within biomedical ethics. Although disabled people and their advocates (...) have been quite vocal regarding their views on disability and in critiquing bioethicists’ approaches to issues that affect them, the interests, knowledge, and experiences of disabled people have had minimal impact on discussions within biomedical ethics textbooks. The risks of making problematic assumptions about disability are high within this subfield insofar as bioethicists impact practices within medical facilities, public policy, and, through student engagement with their texts in biomedical ethics courses, the views of potential health care professionals. All of these, in turn, affect the care provided to disabled people and potential/actual parents of disabled children. Chapter three raises ontological issues related to disability theory, examining the role of the impairment/disability distinction in framing discussions of the body as well as the status of experience. I discuss two approaches to incorporating subjective experiences of the body in disability, arguing that neither is sufficient. I examine debates within feminist theory on questions related to experience. I argue that a feminist phenomenological approach that builds on Merleau-Ponty’s work offers the best way to address bodily experiences in disability theory. The assumptions that disability theorists and Merleau-Ponty make about disability are often at odds. Chapter four points out the ableism in Merleau-Ponty’s use of a case study and considers some of the oversights within Phenomenology of Perception. In spite of my critique, I argue that his approach to phenomenology—with appropriate modifications—is useful not only for theorizing the experiences of disabled people but also for addressing other types of marginalized embodiment. Chapter five applies this method to body integrity identity disorder (BIID), arguing that combining Merleau-Ponty’s insights with those of disability theory allows us to address lived experiences of BIID and to identify assumptions about disability within research on this condition. (shrink)

There is one concept in medicine which is prominent, the symptom. The omnipresence of the symptom seems, however, not to be reflected by an equally prominent curiosity aimed at investigating this concept as a phenomenon. In classic, traditional or conventional medical diagnostics and treatment, the lack of distinction with respect to the symptom represents a minor problem. Faced with enigmatic conditions and their accompanying labels such as chronic fatigue syndrome, fibromyalgia, medically unexplained symptoms, and functional somatic syndromes, the contestation of (...) the symptom and its origin is immediate and obvious and calls for further exploration. Based on a description of the diagnostic framework encompassing medically unexplained conditions and a brief introduction to how such symptoms are managed both within and outside of the medical clinic, we argue on one hand how unexplained conditions invite us to reconsider and re-think the concept we call a “symptom” and on the other hand how the concept “symptom” is no longer an adequate and necessary fulcrum and must be enriched by socio-cultural, phenomenological and existential dimensions. Consequently, our main aim is to expand both our interpretative horizon and the linguistic repertoire in the face of those appearances we label medically unexplained symptoms. (shrink)

In this paper, I discuss the role of care and competence, as well as their relationship to one another, in contemporary medical practice. I distinguish between two types of care. The first type, care1, represents a natural concern that motivates physicians to help or to act on the behalf of patients, i.e. to care about them. However, this care cannot guarantee the correct technical or right ethical action of physicians to meet the bodily and existential needs of patients, i.e. to (...) take care of them—care2. To that end, physicians must be competent in the practice of medicine both as evidence—based science (technical competence) and as patient—centered art (ethical competence). Only then, I argue, can physicians take care of (care2) patients’ bodily and existential needs in a compassionate and comprehensive manner. Importantly, although care1 precedes competence, competence—both technical and ethical—is required for genuine care2, which in turn reinforces an authentic care1. I utilize the play Wit, especially the character Jason Posner, and Francis Peabody’s exposition on caring for patients, to illustrate the role of care and competence in contemporary medical practice. (shrink)

A number of commentators claim their disability to be a part of their identity. This claim can be labelled ‘the identity claim’. It is the claim that disabling characteristics of persons can be identity-constituting. According to a central constraint on traditional discussions of personal identity over time, only essential properties can count as identity-constituting properties. By this constraint, contingent properties of persons (those they might not have instanced) cannot be identity-constituting. Viewed through the lens of traditional approaches to the problem (...) of personal identity over time, disablement is most likely to be regarded as a contingent property of a person and not an essential one. Hence, on traditional approaches, the identity claim must be false. An alternative account of identity is sketched here. It is one which exploits the idea of narrative identity, and points to five basic features of personal existence. When accounts of identity are structured in relation to these five features, it is argued, disablement can be shown to be identity-constituting, and hence the identity claim can be accepted. (shrink)

What clinicians, biomedical scientists, and other health care professionals know as individuals or as groups and how they come to know and use knowledge are central concerns of medical epistemology. Activities associated with knowledge production and use are called epistemic practices. Such practices are considered in biomedical and clinical literatures, social sciences of medicine, philosophy of science and philosophy of medicine, and also in other nonmedical literatures. A host of different kinds of knowledge claims have been identified, each with different (...) uses and logics of justification. A general framework is needed to situate these diverse contributions in medical epistemology, so we can see how they fit together. But developing such a framework turns out to be quite tricky. In this survey, three possible frameworks are considered along with the difficulties associated with each of them. The essay concludes with a fourth framework, which considers any epistemology as part of a practice that is oriented toward overcoming errors that emerge in antecedently given practices where knowledge is developed and used. As medicine indirectly advances health by directly mitigating disease, so epistemology indirectly advances knowledge by directly mitigating error. (shrink)

In this paper I reflect upon my personal experience of chronic progressive multiple sclerosis in order to provide a phenomenological account of the human experience of disability. In particular, I argue that the phenomenological notion of lived body provides important insights into the profound disruptions of space and time that are an integral element of changed physical capacities such as loss of mobility. In addition, phenomenology discloses the emotional dimension of physical disorder. The lived body disruption engendered by loss of (...) mobility includes a change in the character of surrounding space, an alteration in one's taken-for-granted awareness of objects, the disruption of corporeal identity, a disturbance in one's relations with others, and a change in the character of temporal experience. The loss of upright posture is of particular significance since it not only concretely diminishes autonomy but affects the way one is treated by others. Such a change in posture is, therefore, particularly disruptive in the social world of everyday life. An understanding of the lived body disruption engendered by disability has important applications for the clinical context in devising effective therapies, as well as for the social arena in determining how best to resolve the various challenges posed by chronic disabling disorders. (shrink)

Phenomenology has contributed to healthcare by providing resources for understanding the lived experience of the patient and their situation. But within a burgeoning literature on the characteristic features of illness, there has not yet been an account appropriate to describe congenital illnesses: conditions which are present from birth and cause suffering or medical threat to their bearers. Congenital illness sits uncomfortably with standard accounts in phenomenology of illness, in which concepts such as loss, doubt, alienation and unhomelikeness presuppose prior health. (...) These accounts reflect, in different ways, Maurice Merleau-Ponty’s assumption that the ways of living of the ill contain allusions to fundamental, healthy functions. The originality of congenital illness complicates this assumption and demands its own original phenomenology. In this paper, I sketch my personal experience living with a single-ventricle heart condition. While some of this story may reflect my own idiosyncratic experience, I hope that much of it will resonate with the congenital illness experience. I argue that the phenomenological literature on illness, grounded in the notion of loss, does not describe the congenital illness experience. I show how a number of other patient-centred theories of health and illness which have been influential on phenomenology can and cannot elucidate congenital illness. In particular, I consider Georges Canguilhem’s account of the normal and the pathological; debates in disability; and the notion of illness as biographical disruption. I show that congenital illness results in the preadmission of its patients to a paradoxical logic of medical palliation, one product of which is existential maturity. (shrink)

During recent decades various researchers from health and social sciences have been debating what it means for a person to be disabled. A rather overlooked approach has developed alongside this debate, primarily inspired by the philosophical tradition called phenomenology. This paper develops a phenomenological model of disability by arguing for a different methodological and conceptual framework from that used by the existing phenomenological approach. The existing approach is developed from the phenomenology of illness, but the paper illustrates how the case (...) of congenital disabilities, looking at the congenital disorder called cerebral palsy (CP), presents a fundamental problem for the approach. In order to understand such congenital cases as CP, the experience of disability is described as being gradually different from, rather than a disruption of, the experience of being abled, and it is argued that the experience of disability is complex and dynamically influenced by both intrinsic and extrinsic factors. Different experiential aspects of disability— pre-reflective, attuned and reflective aspects—are described, demonstrating that the experience of disability comes in different degrees. Overall, this paper contributes to the debates about disability by further describing the personal aspects and experience of persons living with disabilities. (shrink)

The phenomenology of medicine is that part of the research field of the philosophy of medicine that asks about the subjective experience of illness. In contrast to the philosophy of medicine, the phenomenological approaches explicitly include medical and bioethical questions as part of their research interests. The paper provides an overview of the most important questions and topics of the phenomenology of medicine. Subsequently I will refer to the fundamental critique articulated by feminist positions in the field of phenomenology of (...) medicine. In addition to the socio-political contextualisation of the experience of illness, this also includes the necessary recourse to empirical research. (shrink)

The predominant model of the body in modern western medicine is the machine. Practitioners of the biomechanical model reduce the patient to separate, individual body parts in order to diagnose and treat disease. Utilization of this model has led, in part, to a quality of care crisis in medicine, in which patients perceive physicians as not sufficiently compassionate or empathic towards their suffering. Alternative models of the body, such as the phenomenological model, have been proposed to address this crisis. According (...) to the phenomenological model, the patient is viewed as an embodied person within a lived context and through this view the physician comes to understand the disruption illness causes in the patient’s everyday world of meaning. In this paper, I explore the impact these two models of the patient’s body have had on modern medical practice. To that end I first examine briefly the historical origins of the biomechanical and phenomenological models, providing a historical context for the discussion of each model’s main features in terms of machine-world and life-world. Next, I discuss the impact each model has had on the patient–physician relationship, and then I examine briefly the future development of each model. The meaning of illness vis-à-vis each model of the patient’s body is finally examined, especially in terms of how these two models affect the patient’s interpretation of illness. The paper concludes with a discussion of the biomechanical and phenomenological models, in terms of the quality of care crisis in modern western medicine. (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)

Rufus of Ephesus's treatise Quaestiones Medicinales is unique in the known corpus of ancient medical writing. It has been taken for a procedural handbook serving an essentially operational purpose. But with its insistent message that doctors cannot properly understand and treat illnesses unless they supplement their own knowledge by questioning patients, and its distinct appreciation of the singularity of each patient's experience, Rufus's work shows itself to be no mere handbook but a treatise about the place of questioning in the (...) clinical encounter. This paper concentrates on two aspects of Rufus's thought that are unusual by comparison with other ancient medical texts: his distinctively person-centred rather than disease-based concept of questioning, and his extension of ‘habits’ beyond the dietary and occupational to include an indeterminate range of individual characteristics whose relevance to illness is not immediately obvious. In his quest for subjective information to set alongside ob.. (shrink)

Encounters with illness, impairment, and aging can disrupt one’s experiential relationship with self, body, others, and world. “Healing” takes place when the individual is able to re-integrate his or her world, even if the condition is not medically curable. Drawing on work in the phenomenology of the body, this article examines a series of eight “healing strategies” individuals employ, each representing a different way of orienting toward the painful or impaired body. One may lean into freeing oneself from the body, (...) through strategies of “refusing,” “ignoring,” “objectifying,” or “transcending” its problems. Conversely, one may choose to embrace the body, through strategies such as “accepting,” “listening,” “befriending,” or “witnessing.” It can be beneficial to have a good number of such coping strategies at one’s disposal, enhancing flexible response to chronic challenges. They also are often used in synergistic or complementary combinations. (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)

This article explores the relation among illness, home, and belonging. Through a feminist phenomenological framework, I describe the disorientations of being diagnosed with borderline personality disorder and living with mental illness. This research anticipates the consequences of illness and serious disorientations for a conception of belonging as seamless body–world compatibility. Instead, this article examines how the stability of bodily dwellings in experiences of disorientation can suggest ways of being in the world that are more attentive to interdependency, unpredictability, and change (...) in human experience. I argue that these types of dwellings function as a more capacious and apposite metaphor to account for variations in belonging. This discussion outlines the ethical importance of building worlds that make room for different ways of being at home in and through our interactions with others. Although my discussion does not supply norms for ethical action, I contend that a feminist phenomenology of illness generates saliences and illuminates sensibilities that can transform our ways of being with others. (shrink)

Long-term cancer survivorship is an emerging field that focuses on physical late-effects and psychosocial implications for the inflicted. This study wishes to cast light on the underlying ontological aspect of long-term survivorship by philosophically exploring how being in life post cancer is perceived by survivors. Sixteen in-depth interviews with 14 Danish cancer survivors were conducted by the author. Having faced a life-threatening disease but no longer being in imminent danger of dying, survivors still considered death a defining yet dynamic component (...) in their approach to life as a moving toward the end, sparking a sense of vitality in mortality. In order to unfold the interviewees’ renewed existential understanding post cancer, this study employs Martin Heidegger’s ontological analysis of death. In survivorship, my participants can thus be understood as being left with the perpetual choice between living in inauthenticity or in authenticity. The difference between the two modes of existence exhibits two diverging ways of relating to death, self, and being-in-the-world. At the same time, the role of death in long-term survivorship reflects back on the magnitude of the initial existential and moral upheaval triggered by the cancer diagnosis. Understanding the role of death in long-term survivorship can positively inform the field of cancer rehabilitation and long-term survivor care. (shrink)

Fredrik Svenaeus has applied Heidegger’s concept of ‘being-in-the-world’ to health and illness. Health, Svenaeus contends, is a state of ‘homelike being-in-the-world’ characterised by being ‘balanced’ and ‘in-tune’ with the world. Illness, on the other hand, is a state of ‘unhomelike being-in-the-world’ characterised by being ‘off-balance’ and alienated from our own bodies. This paper applies the phenomenological concepts presented by Svenaeus to cases from a study of depression. In doing so, we show that while they can certainly enrich our understanding of (...) depression, they can also reveal a clash between some societal definitions of illness and the individual’s definition. Phenomenological analysis may thus cause us to question what we mean, or think should be meant, by the terms ‘health’ and ‘illness’. (shrink)

On one side of his sign board, a nineteenth century surgeon depicted a physician operating on a patient's leg; the other side showed the Good Samaritan taking care of the victim's wounds. Christ's parable has often been quoted and depicted as a primary example of human compassion, to be followed by all persons and, a fortiori, by so-called professionals such as physicians and nurses. If we grant that the parable has not lost its narrative power for 20th century “postmodern” readers (...) living in a “pluralistic” society, it merits a closer analysis. (shrink)

In the literature three mechanisms are commonly distinguished to make decisions about the care of incompetent patients: A living will, a substituted judgment by a surrogate (who may or may not hold the power of attorney ), and a best interest judgment. Almost universally, the third mechanism is deemed the worst possible of the three, to be invoked only when the former two are unavailable. In this article, I argue in favor of best interest judgments. The evermore common aversion of (...) best interest judgments entails a risk that health care providers withdraw from the decision-making process, abandoning patients (or their family members) to these most difficult of decisions about life and death. My approach in this article is primarily negative, that is, I criticize the alleged superiority of the living will and substituted judgment. The latter two mechanisms gain their alleged superiority because they are supposedly morally neutral, whereas the best interest judgment entails a value judgment on behalf of the patient. I argue that on closer inspection living wills and substituted judgments are not morally neutral; indeed, they generally rely on best interest judgments, even if those are not made explicit. (shrink)