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)

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)

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)

The vulnerability of a patient gives rise to special obligations to provide aid, but the extent of our obligations to those vulnerable is not always clear. How far we are obligated to provide aid raises profound questions over the balance of liberty, equality, utility, and other core values for which we ought to strive in modern society. This essay helps illustrate how such a balance must be worked out in relation to rich contexts and be responsive to continually evolving epistemic (...) and social configurations. (shrink)

Starting from a phenomenological understanding of the body, this article discusses the understanding of body awareness in health and illness. I question the common way to understand our relationship to our bodies in terms of subjective and objective perspectives on it, and furthermore, how this opposition has been used in the phenomenological literature to outline an understanding of health and illness as states where the body stays unnoticed versus resurfaces to our attention as dysfunctional. Using examples from an ongoing interview (...) study, I argue for an understanding of the dialectical interplay between body and world in our awareness, and how it can be understood as an approaching or distancing movement to body and world. I furthermore describe how the interplay between body and world effects and is effected by our existence in health and illness. Finally, I suggest what implications this new way of understanding the lived body has for health care practice in general, and for the development of a person‐centred care in particular. I suggest that we leave the dichotomous understanding of subjective and objective perspectives behind, and start to investigate how we move between different kinds of body awareness in health and illness. Illness, as a situation where that which has been taken for granted becomes questioned, can be said to be characterized by mistrust, and by a distancing from world and body. It is thus of importance for caregivers to provide the time, space and trusting atmosphere needed in order to make the approaching movement possible. (shrink)

Over one hundred years after Max Weber delivered his lecture “Science as a Vocation,” his description of the work of the physician in a disenchanted world still resonates. As a chronically ill patient who interacts with physicians frequently, I struggle with reconciling my understanding of my ill body with how my physician makes sense of my illness. My diagnosis created an existential crisis that caused me to search for meaning in my embodied experience, but I soon learned there is little (...) room for such a search within modern biomedicine. Instead, I turned to fine art to help me make sense of my ill body and its purpose in my life. With the aid of my printmaker sister, Darian Goldin Stahl, I have transformed the magnetic resonance images of my body into works of art, which help to re-enchant my body and give purpose to my illness. (shrink)

In this paper I will try to systematically lay out and describe the multiple dimensions of the embodied experience of illness, which until recently has been the main focus within the field of the phenomenology of medicine. In order to do this, I will turn to analysis of the nature of embodiment in Husserl’s phenomenology. I will argue that based on Husserl’s phenomenology of the body, one can distinguish four ways of experiencing one’s body, or four dimensions of embodiment. I (...) will distinguish between experience of one’s body as 1) a bearer of sensations ; 2) a seat of free movement, characterized by the faculty of “I can” ; 3) a material thing in a causal relationship with the material world ; 4) a material thing embedded in a social context. I will then apply the proposed classification of dimensions of embodiment to the experience of illness, focusing on the various ways these dimensions have been used within the phenomenology of medicine. This serves two purposes. Firstly, it provides a framework for classification of the existing interpretations of the experience of illness; secondly, it opens up a way for a comprehensive analysis of the experience of illness which includes both individual and social aspects of embodiment as well as their mutual intertwining. (shrink)

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)

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...

The paper argues that the idea of gift-giving and its associated imagery, which has been founding the ethics of organ transplants since the time of the first successful transplants, should be abandoned because it cannot effectively block arguments for markets in human body parts. The imagery suggests that human bodies or their parts are transferable objects which belong to individuals. Such imagery is, however, neither a self-evident nor anthropologically unproblematic construal of the relation between a human being and their body. (...) The paper proposes an alternative conceptualization of that relation, the identity view according to which a human being is identical with their living body. This view, which offers a new ethical perspective on some central concepts of transplant medicine and its ethical and legal standards and institutions, supports widely shared intuitive ethical judgments. On this proposal, an act of selling a human body or one of its parts is an act of trade in human beings, not in owned objects. Transfers of human body parts for treatment purposes are to be seen as sharing in another human being’s misfortune rather than as giving owned objects. From the perspective of policy-making, the proposal requires, first, that informed consent for removal of transplant material be obtained from the potential benefactor. Secondly, explicit consent by the prospective benefactor is obligatory in the case of removal of transplant material from a living benefactor. Thirdly, in the case of posthumous retrieval, informed consent by the potential benefactor during their life is not ethically indispensable. Additionally, while refusal of posthumous retrieval expressed by a potential benefactor during their life must be respected, such a refusal needs ethical justification and explanation. (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)

During the last few decades, many thinkers have advocated for the importance of the phenomenological approach in developing the understanding of the lived experience of illness. In their attempts, they have referred to ideas found in the history of phenomenology, most notably, in the works of Edmund Husserl, Martin Heidegger, Maurice Merleau-Ponty and Jean-Paul Sartre. The aim of this paper is to sketch out an interpretation of illness based on a yet unexplored conceptual framework of the phenomenology of French thinker (...) Jean-Luc Marion. Focusing on concepts of the saturated phenomenon and flesh, the paper develops an interpretation of illness as the saturated phenomenon, which highlights a variety of dimensions of illness already elaborated within the phenomenology of medicine, such as the affective dimension of illness, the disruptive dimension of illness, the transformed perception of the self in illness, mineness of flesh in illness and the inexpressible and hermeneutical dimension of illness. In addition to that, the paper explores some of the consequences the proposed interpretation of illness offers regarding the nature of illness and health. It is argued that illness in its essence is very similar to the experience of other saturated phenomena, suggesting that the difference between them does not lie within the character of the affective givenness, but rather within the dynamic relationship between the affective givenness and its conceptualization. It is also shown that the experience of health is compatible with the experience of saturation and thus is not limited to the tacit and harmonious background state. (shrink)

This paper comprises a feminist phenomenological exploration of women’s experiences with breast augmentation and breast reduction. Situating the results of semi-structured interviews in the context of body schema, this study discloses how women perceive, think, feel and respond to bodily change created by elective breast surgery. Women’s narratives express that breast augmentation and reduction shifted their conception of the lived body and its possibilities by provoking bodily reorientations and adjustments as well as changes in bodily sensations. In contrast with body (...) image studies that emphasize elective breast surgery as transforming attitudes towards the body, this phenomenological investigation reveals that elective breast surgery also galvanizes a relearning of the world and a rearticulation of embodied doing. (shrink)

[Excerpt]: In the nonideal world against which philosophical ideas and ideals are tried, suffering is distributed unequally. A central, if not defining, question for many late-twentieth-century feminist ethicists is how and why so many forms of suffering are distributed by virtue of bodily difference. For over four decades, disability studies, a multidisciplinary field spanning the humanities and social sciences, has principally revolved around a basic question: is the concept of "disability" constructed like "race," "gender," or "sexuality"? In other words, is (...) it as much a construct as any category historically deployed to justify socially produced sufferings, inequities, and hierarchies and to disenfranchise, stigmatize, and... (shrink)

A phenomenological approach to anthropology should not propose a static definition of man, but inquire into specific human motivations, which never occur isolated. Therefore, the autonomy-dependency connection is presented as a possible human motivational ground. The notion of autonomy, presented with reference to the Kantian idea of the self-determining reason and to the Husserlian account of self-constitution, reveals in itself elements of dependency. On the other side, the notion of vulnerability and reliance is displayed through different approaches of Gehlen, MacIntyre (...) and Toombs in order to illustrate dependency not as a mere capitulation of the subject, but as one of its intrinsic possibilities, which does not exclude autonomous will. (shrink)

The aim of this paper is to clarify what “phenomenological” means in the phenomenological researches of nursing and what “method” is or should beadopted in phenomenological researches of nursing. The essay first defines a traditional classification of the phenomenological researches of nursing by Cohen and Omery, and then gives a new attempt to classify the phenomenological approaches in the theories of nursing. On this basis, the essay reviews some representative “phenomenological” researches of nursing today and addresses critical comments to them. (...) Finally, the essay will make clear what “phenomenological” should mean in the phenomenological research of nursing and what kind of “method” should be adopted in those researches. (shrink)

Patients with a life-threatening illness can be confronted with various types of loneliness, one of which is existential loneliness (EL). Since the experience of EL is extremely disruptive, the issue of EL is relevant for the practice of end-of-life care. Still, the literature on EL has generated little discussion and empirical substantiation and has never been systematically reviewed. In order to systematically review the literature, we (1) identified the existential loneliness literature; (2) established an organising framework for the review; (3) (...) conducted a conceptual analysis of existential loneliness; and (4) discussed its relevance for end-of-life care. We found that the EL concept is profoundly unclear. Distinguishing between three dimensions of EL—as a condition, as an experience, and as a process of inner growth—leads to some conceptual clarification. Analysis of these dimensions on the basis of their respective key notions—everpresent, feeling, defence; death, awareness, difficult communication; and inner growth, giving meaning, authenticity—further clarifies the concept. Although none of the key notions are unambiguous, they may function as a starting point for the development of care strategies on EL at the end of life. (shrink)

This paper is prompted by the charge that the prevailing Western paradigm of medical knowledge is essentially Cartesian. Hence, illness, disease, disability, etc. are said to be conceived of in Cartesian terms. The paper attempts to make use of the critique of Cartesianism in medicine developed by certain commentators, notably Leder (1992), in order to expose Cartesian commitments in conceptions of disability. The paper also attempts to sketch an alternative conception of disability — one partly inspired by the work of (...) Merleau-Ponty. In particular, three key Cartesian claims are identified and subjected to criticism. These are as follows: (a) The claim that the body is an object, (b) what is termed here ‘the modularity thesis’, and (c) the claim that the body cannot be constitutive of the self (i.e. since the soul/mind/brain is). In opposition to these claims, it is argued that the body is properly viewed as a subject; that there are neither purely mental, nor purely physical disabilities; and that selves are constituted, at least in part, by their bodies. (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)

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)

When elderly people are ideating on manners to end their lives, because they feel life is over and no longer worth living, it is important to understand their lived experiences, thoughts and behaviour in order to appropriately align care, support and policy to the needs of these people. In the literature, the wish to die in elderly people is often understood from a medical, psychopathological paradigm, referred to as cognitive impairment, depressive disorder, pathological bereavement, and suicidality. In this paper, we (...) evaluate this dominant paradigm by considering three serious limitations, namely: (1) the risk of epistemic transformation; (2) the risk of reduction; and (3) the risk of obscuring the social and cultural embeddedness. Drawing on insights from our empirical–phenomenological research on the issue of elderly and the self-chosen death, this paper argues for a phenomenological perspective to counteract the medicalisation of death wishes in elderly people. (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)

In this paper I explore the various meanings of embodiment from a patient’s perspective. Resorting to phenomenology of health and medicine, I take the idea of ‘lived experience’ as starting point. On the basis of an analysis of phenomenology’s call for bracketing the natural attitude and its reduction to the transcendental, I will explain, however, that in medical phenomenological literature ‘lived experience’ is commonly one-sidedly interpreted. In my paper, I clarify in what way the idea of ‘lived experience’ should be (...) revisited and, subsequently, what this reconsideration means for phenomenological research on embodiment in health and medicine. The insight that the body is a condition of possibility for world-disclosing yet, at the same time, itself conditioned by this world forces us to not only zoom in on the body’s subject-side, but also on its object-side. I argue that in order to render account for this double body ontology, phenomenology should include empirical sociological analyses as well. I thus argue in favor of the idea of a socio-phenomenology. Drawing on material from my own research project on embodied self-experiences after breast surgery, I show how this approach can be fruitful in interpreting the impact of disfigurements on a person’s embodied agency, or a person’s ‘I can’. (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)

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)

In this paper I develop a phenomenology of falling ill by presenting, interpreting and developing the basic model we find in Jean-Paul Sartre's Being and Nothingness. The three steps identified by Sartre in this process are analysed, developed further and brought to a five- step model: pre-reflective experience of discomfort, lived, bodily discomfort, suffered illness, disease pondering, and disease state. To fall ill is to fall victim to a gradual process of alienation, and with each step this alienating process is (...) taken to a new qualitative level. Consequently, the five steps of falling ill have not only a contingent chronological order but also a kind of logical order, in that they typically presuppose each other. I adopt Sartre's focus on embodiment as the core ground of the alienation process, but point out that the alienation of the body in illness is not only the experience of a psychic object, but an experience of the independent life of one's own body. This facticity of the body is the result neither of the gaze of the other person, nor of a reflection adopting the outer perspective of the other in an indirect way, but is a result of the very otherness of one's own body, which addresses and plagues us when we fall ill. I use examples of falling ill and being a patient to show how a phenomenology of falling ill can be helpful in educating health-care personnel about the ways of the lived body. (shrink)

I have been breathless for a long time. I lagged behind others when walking uphill. I became breathless when dancing. I couldn’t play tennis. But I somehow convinced myself that this was normal. I was getting older—perhaps in one’s mid-30s fitness drops like this, I thought? Perhaps I have “small lungs,” my husband speculated. But we were both physically active, and as we were living in Australia at the time, we enjoyed bush-walking, bike riding, and the sunshine that permeates outdoor (...) life down under. So I masked my breathlessness as best I could, and never went to see a doctor, despite my clear and increasing respiratory difficulties.Two years went by. We returned to live in the United Kingdom—in hilly Bristol.. (shrink)

Peer learning involves processes whereby inexperienced persons learn from persons with more experience. Previous research has shown the benefit of peer learning to the rehabilitation process of people with spinal cord injuries and others using a wheelchair, yet discussions of problematic aspects are scant. Thus, the purpose of this article is to highlight two problems with peer learning. By presenting a vignette elaborated from a phenomenologically oriented case study of a wheelchair skills program at a Norwegian rehabilitation unit, the problem (...) of a naive view of empathy and the danger of inflicting symbolic violence are reflected upon. These reflections, though tentative, draw attention to the ethical responsibility of rehabilitation professionals who use peer learning as a part of their intervention. (shrink)

Patients with a life-threatening illness can be confronted with various types of loneliness, one of which is existential loneliness (EL). Since the experience of EL is extremely disruptive, the issue of EL is relevant for the practice of end-of-life care. Still, the literature on EL has generated little discussion and empirical substantiation and has never been systematically reviewed. In order to systematically review the literature, we (1) identified the existential loneliness literature; (2) established an organising framework for the review; (3) (...) conducted a conceptual analysis of existential loneliness; and (4) discussed its relevance for end-of-life care. We found that the EL concept is profoundly unclear. Distinguishing between three dimensions of EL—as a condition, as an experience, and as a process of inner growth—leads to some conceptual clarification. Analysis of these dimensions on the basis of their respective key notions—everpresent, feeling, defence; death, awareness, difficult communication; and inner growth, giving meaning, authenticity—further clarifies the concept. Although none of the key notions are unambiguous, they may function as a starting point for the development of care strategies on EL at the end of life. (shrink)

While there has been a vast amount of research on breast cancer in recent years, areas within this domain remain unexplored. For instance, there have been few attempts to marry an understanding of the social context in which breast cancer occurs with an understanding of subjective experiences of this condition. The purpose of this study was to explore women's experiences of embodiment after breast cancer, utilizing a phenomenological approach rooted in a feminist perspective. The focus of this article is upon (...) the changes to embodiment that are long‐term. Twelve women were interviewed on two occasions each and were asked to talk about changes to their bodies that occurred as a result of breast cancer. Three key themes were identified: (1) how it feels (e.g. sensation and breast loss); (2) managing appearances (e.g. wearing prostheses); and (3) treatments without end (e.g. menopause). The findings of this study show that women with breast cancer are a diverse group and that survivorship is a dynamic, life‐long process, which suggests that health professionals can play an important role in establishing interdisciplinary approaches to caring, beyond the conclusion of acute treatment. (shrink)

A well-worn trope used by phenomenologists is that things that remain invisible or unnoticed in the course of our everyday being in the world reveal themselves in instances of breakdown. This paper borrows this trope to explicate one instance of breakdown, that of traumatic spinal cord injury (TSCI). We use the phenomenology of Heidegger, especially his formulation of ecstatic temporality presented in Being and Time, to illuminate the temporal issues surrounding this radical rupture in Dasein’s being in the world through (...) data collected from field observations of inpatient rehabilitation, interviews with persons with TSCI, and with their rehabilitation providers. Specifically, we explore the breakdown in temporality (the rupture on thrown projection) that occurs in persons who experience TSCI across three interconnected existential dimensions – understanding, attunement (mood), and falling. We conclude by discussing the value this approach to human temporality might have for both social scientists interested in human temporality and to practitioners interested in research related to the rehabilitation process. (shrink)

The present paper explores patients’ experience of lived space at the hospital and at home. To expand the understanding of the existential meaning of lived space the study revisited two empirical studies and a study of a meta-synthesis on health and caring. Phenomenological philosophy was chosen as a theoretical framework for an excursive analysis. The paper demonstrates that existential dimensions of lived space at the hospital and at home differ significantly. For the patients, the hospital space means alien territory as (...) opposed to the familiar territory of home. To some extent the experienced differences are due to the physical environment; however, as our analysis shows, other and more significant meanings are also involved. For patients, lived space at the hospital primarily concerns the influence of complex institutional power structures and specific cultural and social conventions, e.g. the role of the good patient and the ambiance of hospitals. Home, on the other hand, offers familiar lived space in which patients feel protected and safe. Further, the paper relates patients’ experience of lived space to a phenomenological view of lived space in order to illustrate the radical influence of illness on patients’ lifeworld and experience of lived space. The combination of illness and general discomfort may influence patients’ experience of home negatively; the former experience of home as a sanctuary changes into feelings of being left on one’s own and burdened by too much responsibility. Consequently, in the light of the increasing focus on patients’ self-monitoring at home, it is important for healthcare professionals to recognize the influence of spatial aspects on patients’ well-being both at the hospital and at home. (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)

Scientific medicine has been successful by ways of an ever more detailed understanding and mastering of bodily functions and dysfunctions. Biomedical research promises new triumphs, but discontent with medical practice is all around. Since several decades this has been acknowledged and discussed. The philosophical traditions of phenomenology and hermeneutics have been proposed as promising ways to approach medical practice, by ways of a richer understanding of the meaning structures of health and illness. In 2000, Swedish philosopher Fredrik Svenaeus published a (...) book where he proposes that the phenomenological hermeneutics of Martin Heidegger and also the reflections on health and illness of Hans-Georg Gadamer offer important ways to approach the nature of medicine. In particular, Svenaeus argues that the goal of medicine is to promote and restore health, and that health ought to be seen as “homelike being-in-the-world”. Unhealth, illness, consequently should be understood as a situation where a person’s “being-in-the-world” in characterized by that lack of the rhythm, balance and “tune” of everyday living that characterizes not “being at home”. In this article, Svenaeus’ position is briefly outlined. Questions are raised whether “unhomelikeness” is to be seen as a metaphor, and, if so, if it is a fruitful such. Furthermore, I discuss whether or not a discourse on health and illness in these terms may be misleading in a situation where the ontological presuppositions of Heidegger are lost out of sight and the popular understanding of health psychology predominates. I also approach the question whether Svenaeus’ assumptions may inadvertently lead us to an unjustifiably broad understanding of the tasks of medicine. It is finally concluded that Svenaeus phenomenological and hermeneutical approach is both interesting and promising. There are, however, several questions that ought to be pursued further, and the step from philosophical analysis to everyday clinical discourse may be unexpectedly long and risky. (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)

After 50 years of being profoundly deaf, Patricia finds her world ‘transformed’—literally and metaphorically—when she receives a cochlear implant. Her sense of self and the taken-for-granted, comfortable world she knew before surgery disappear and she is thrown into an alien, surreal existence full of hyper-noise. Entry into this new world of sounds proves a mixed blessing as Pat struggles to come to terms with her changing relationships, not only with others but also with herself. On good days, she is exhilarated (...) by all her sensory gains and her feeling of being more connected with and to the world. On bad days she is distracted and overwhelmed by the intrusive noise and she is forcibly confronted with the painful reality of her own disability. The challenge she confronts is not simply the cognitive-perceptual one of learning to discriminate between sounds. Pat must also re-orientate herself and learn to cope with her transformed self and world. She must undertake a journey to come to terms with her past, present and future being. Pat shared her story with me and together we undertook collaborative existential phenomenological research, co-creating a narrative of her journey over the year and a half following her implant. This paper presents this narrative followed by an existential analysis of Pat’s disrupted, changing lifeworld. (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)

This paper explores causation in the context of health care practice, in particular, primary care. Causation in health care is necessarily premised on the concepts of disease and illness and the ways they are deviations from health. The paper reviews and broadly categorises concepts of illness most commonly found in the literature in terms of the biomedical, biopsychosocial, and agency models. It is argued that although each model has its place in the gamut of health care practice, primary care implicitly (...) or explicitly uses an agency model most frequently. By explicitly acknowledging the role that patients’ values and expectations have in utilising their physiological, psychological and social capacities to live their lives, clinicians can gain a clearer understanding of how a situation has come about and why it has become a health problem for the patient. (shrink)