In Phillip Kerr’s 1994 spellbinding novel A Philosophical Investigation, the medical test to which the protagonist refers is a functional brain scan based on positron emission tomography. It is used to run large studies of male and female brains and, following a lead suggested by animal studies, has been used to identify rare cases of human male subjects who lack the ventral medial nucleus. This nucleus, in the experiment, is hypothesized to inhibit the activity of the sexually dimorphic nucleus, a (...) preoptic area of the male brain believed to be a repository of male aggressive response. Prior research, we learn from the plot, shows that 3 in 100,000 human males are VMN-negative. Thirty percent of those affected are believed to be in prison or to have a criminal record; 70% are believed to stabilize levels of aggression by producing increased levels of estrogen. Identities of subjects participating in the brain scan studies are protected through the conversion of real names to those of famous figures of the past — Bertrand Russell, Charles Dickens. Those for whom results are unfavorable are recontacted, and they are offered counseling. (shrink)

As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an (...) ethical agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier. (shrink)

While new generations of implantable brain computer interface devices are being developed, evidence in the literature about their impact on the patient experience is lagging. In this article, we address this knowledge gap by analysing data from the first-in-human clinical trial to study patients with implanted BCI advisory devices. We explored perceptions of self-change across six patients who volunteered to be implanted with artificially intelligent BCI devices. We used qualitative methodological tools grounded in phenomenology to conduct in-depth, semi-structured interviews. (...) Results show that, on the one hand, BCIs can positively increase a sense of the self and control; on the other hand, they can induce radical distress, feelings of loss of control, and a rupture of patient identity. We conclude by offering suggestions for the proactive creation of preparedness protocols specific to intelligent—predictive and advisory—BCI technologies essential to prevent potential iatrogenic harms. (shrink)

Advances in neuroscience are changing how mental health issues such as addiction are understood and addressed as a brain disease. Although a brain disease model legitimizes addiction as a medical condition, it promotes neuro-essentialist thinking and categorical ideas of responsibility and free choice, and undermines the complexity involved in its emergence. We propose a “biopsychosocial systems” model where psychosocial factors complement and interact with neurogenetics. A systems approach addresses the complexity of addiction and approaches free choice and moral responsibility within (...) the biological, lived experience and sociohistorical context of the individual. We examine heroin-assisted treatment as an applied case example within our framework. We conclude with a discussion of the model and its implications for drug policy, research, addiction health care systems and delivery, and treatment of substance use problems. (shrink)

With the Accreditation Council for GraduateMedical Education''s designation of professionalism as one of six corecompetencies in residency medical education,some educators of residents and medicalstudents believe that the concept ofprofessional role is too restrictive and narrowfor grappling with the complex dynamics ofprofessional–patient relationships. The ethicalquandaries of abortion and physician assistedsuicide illustrate how individual personalvalues cannot be ignored in the dynamicrelationship between health care professionaland patient. This article describes a medicalschool course where students are paired with patient mentors. Within the dynamic andintimate (...) relationship that unfolds over severalmonths, students explore the experience ofboundaries, and are invited to use thisexperience to consider their evolvingprofessional identity. (shrink)

This article addresses the question of what it is that visual depictions of illness portray, particularly images executed by or on behalf of people who have suffered serious illness. It takes up two lines of inquiry, both to do with the work that such pictures might perform. On the one hand, as works of art, there are questions about the form of signification in visual representations of this kind. On the other, as works of illness, there are (...) issues concerning the role of image-making for sufferers bearing witness to their situation. The article examines the issue of what it is to look at pictures of bodies scarred by treatment for serious disease, and follows this into questions about what it is possible and necessary to show in order to render illness experience tangible. By examining, as exemplars, two particular images of sufferers, it is argued that such portrayals work not just through making visible certain objects for scrutiny, but by figuratively instantiating persons so as to produce a `vision of the non-visual'. In this way picturing illness finds its place in what might be called a politics of care. (shrink)

A growing epidemic of chronic illness in working populations contributes to a negative spiral of work and organizational outcomes including increased absenteeism, prolonged disability or illness claims, early work termination, and non-voluntary unemployment. Chronic illness, characterized by fluctuating trends in clinical and embodied experience along a prolonged time course, is intersubjectively experienced within a social context, and variably responded to and managed within and between organizations and countries. Drawing from global health, we discuss chronic illness (...) experience and organizations as context for chronic illness experience. We then propose a model of ‘organizational caregiving,’ highlighting how invested relational understanding, attitude, intent, and acts of care can enrich the work and organizational experiences of employees with chronic illness. (shrink)

The illness immersion condition prevents patients from enjoying everything worth living life for. In any case, according to Frank, this condition could represent one of the most insightful experiences towards understanding the meaning of life. Using the metaphor of phoenix taken from May, Frank identified four kinds of embodiments through which the phoenix can reveal itself in a patient after an illness immersion experience: the phoenix that could ever be and the phoenix that might have been; the (...) recurrent and cumulative phoenix and the reluctant phoenix. Based on these considerations, a qualitative study was conducted in order to give voice to the different phoenix embodiments focusing on several autobiographies of patients afflicted with severe or terminal illness. The analysis highlights several similarities that the different phoenixes shared ; however, a deep difference emerged in their worldview which proves able to lead them towards different epiphanies. These evidences reveal that every sick person should be understood, stimulated and accompanied throughout his lived experience of illness by an expressly designed and dedicated care. (shrink)

The experience of illness raises profound issues concerning the sense or non-sense of human existence as a whole: does life have meaning when it is marked by suffering? And what meaning would it bear, in this case? These questions are asked by both caregivers and recipients of care when they come into contact with limits, pain, and death. In this regard, the existential condition of homo patiens is ambiguous: it can lead either to nihilism and despair or to (...) a higher level of awareness and responsibility. Studies on resilience, post-traumatic growth, and meaning-making processes seem to suggest that in difficult situations the search for meaning comes most clearly to the fore, so that the possibility of finding meaning in life can be a protective factor and a key therapeutic resource, while meaninglessness increases weakness and vulnerability. But what is meant by “meaning” in the illness experience and how may it be integrated into one’s personal life story? This question is answered here in terms of narrative methods that can enhance healthcare practitioners’ capacity to approach their patients with sensitivity and deep understanding and guide them to find meaning in their lives, despite all. (shrink)

Psychopathology can render people strange and difficult to understand. Communication can lead to empathic understanding, which in turn can guide compassionate action. But communication depends on a shared conceptual world. How can language convey meanings that are not shared, that mark a divide between human beings or whole communities? A consideration of the poetics of Paul Celan sheds light on the power of language to bridge disparate worlds and on the ethical stance needed when empathy fails. Celan’s poetics of alterity (...) has implications for our efforts to understand individuals’ illness experience as a grounding for the ethics of the clinical encounter. (shrink)

We propose that certain forms of chronic illness can be transformative experiences, in the sense described by L.A. Paul.

Depression is an affective disorder involving a significant change in an individual’s emotional and affective experiences. While the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition mentions that social impairment may occur in depression, first-person reports of depression consistently name isolation from others as a key feature of depression. I present a phenomenological analysis of how certain interpersonal relations are experienced in depression. In particular, I consider whether depressed individuals are able to enter into “we-experiences” with other people. We-experiences (...) are experiences had with two or more people as a we, experiences that allow one to enter into robustly shared experiences with others. I claim that the ability to enter into we-experiences is eroded in depression due to an overwhelming feeling of being different to and misunderstood by others. As such, I suggest that depression should be conceived of as fixing an individual in their first-person singular perspective, thus inhibiting their ability to experience in the first-person plural and to feel a sense of connectedness or togetherness with others as part of a we. By attending to on-going impacts of a diminished ability to enter into we-experiences, we can provide a situated and more nuanced account of the changes of interpersonal relations in depression that captures the progressive nature of the disorder. In turn, this analysis furthers our understanding of the emergence, frustration, and erosion of actual and habitual we-experiences. (shrink)

Background Preserving persons’ dignity is integral to nursing. More research is needed to explore how a diversity of patients, particularly those that experience illness from a young age, experience dignity. Aim Describe the characteristics of dignity for persons living with serious illness. Research design Using a secondary data set of twenty audio-recorded interviews, a thematic content analysis was conducted to identify characteristics of dignity. The research team employed van Gennip et al.’s, 2013 “Model of Dignity in (...) Illness” (1) to create a codebook, which the authors utilized to independently code twenty narrative interview transcripts. Participants and research context Twenty persons living with serious illness of heart failure and/or dialysis-dependent renal failure who were admitted in an acute care hospital. Ethical considerations This study was approved on August 26, 2019, by the Colorado Multiple Institutional Review Board (COMIRB) IRB Protocol #19-1874. Findings Early-onset participants expressed markedly different dignity concerns than late-onset participants. In the individual domain, early-onset participants felt that their illness was “normal”; they did not experience the “healthy person to patient” transition described by older onset participants. In the relational domain, early-onset participants expressed that their relationships had already integrated their illness while late-onset participants felt that their illness harmed many of their relationships. In the societal domain, early-onset participants described dignity concerns related to how society impacted their ability to financially support themselves during their illness. Discussion Differences in the dignity experience of early-onset and late-onset participants are informed by Erikson’s “Model of Development” and by Aranda and Jones feminist critique of dignity in healthcare. Conclusions Persons with early-onset illness experience dignity differently. Awareness of the importance of work and financial independence to the experience of dignity for seriously ill patients may enhance persons’ dignity experience. (shrink)

Sharing Experiences of Illness and Effectiveness of Asthma Therapy in Children This research deals with relationships between openness and opportunities to share asthma experiences between an ill child and close family, and effectiveness of medical therapy of asthma. Subjects were 58 children, between the age of 12-14, from the allergic outpatient clinic with a diagnosed bronchial asthma and under pharmacological therapy. Each child answered questions on frequency and satisfaction with talking with parents, or other close family members, on his (...) or her experiences related to asthma. A doctor conducting the therapy was asked to evaluate results of therapy, and intensity of the asthma, for each child. The data support the hypotheses that degree of sharing own asthma-related experiences with close persons correlates positively with effectiveness of therapy. This effect appears stronger among children with more severe asthma. (shrink)

The purpose of this article is to show how the development of a phenomenology of the lived body is of special interest for a philosophical elucidation of the illness that takes charge of the patient's perspective in its specific theoretical relevance. Starting from a critique of the Cartesian paradigm of the body-machine and the consequent de-emphasis of the personal experience of the disease, it will be shown how the phenomenological perspective allows us to account for the constituent elements (...) of the illness experienced in the first person, such as alteration or disintegration of the link I-body-world-others. Finally, the question of the physical, emotional, and cognitive response to the disease and the way in which phenomenological reflections on the disease converge in a reflection on identity, vulnerability, and recognition will be addressed. (shrink)

This essay argues that, while much has been gained by medicine's focus on the spatial aspects of disease in light of developments in modern pathology, too little attention has been given to the temporal experience of illness at the subjective level of the patient. In particular, it is noted that there is a radical distinction between subjective and objective time. Whereas the patient experiences his immediate illness in terms of the ongoing flux of subjective time, the physician (...) conceptualizes the illness as a disease state according to the measurements of objective time. A greater understanding of this disparity in temporal experiencing provides insights into the lived experience of illness and can preclude difficulties in communication between physician and patient. (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)

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

When invited to describe what the experience of illness taught them, a select group of bioethicists took eagerly to the task. This commentary culls three themes from their reflections: responsiveness to vulnerability, love as the proper motive for care, and reflective practice. U.S. bioethics was slow to appreciate the importance of recognizing and responding to human vulnerability. These essays describe its central importance for those suffering illness and make educating a more empathic and responsive generation of caregivers (...) a priority. Descriptions of how family and friendship bonds with an ill person created a unique sense of their inherent dignity and needs clearly raises the question of whether or not love is a necessary motive for professional caregivers. Will our professional care always fall short if not motivated by genuine human love? Finally, each essay teaches anew the importance of the life lessons human experience can teach if we value reflection and seek to experience, understand and learn from our experience. (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)

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)

As someone diagnosed with severe chronic mental illness early in my adolescence, I have spent over half of my life feeling out of step with the rest of the world due to hospitalizations, treatment programs, and the disruptions caused by anxiety, anorexia, depression, and obsessive–compulsive disorder. The effect of my mental health conditions compounded by these treatment environments means I often feel that I experience time passing differently, which results in sensations of removal and isolation from those around (...) me. The global shutdown caused by the COVID-19 pandemic seemed a way for normative bodies to experience the passing of time the way I always have. In this paper, I extend Dr. Sara Wasson’s analysis of the ways in which chronic pain resists narrative coherence to my own temporal experience of chronic mental illness, specifically my embodied experience of the pandemic. I use that embodied experience as a case study for examining how the reciprocal nature of time and narrativity, as outlined by Dr. Paul Ricoeur, can create isolation for those struggling with their temporality due to chronic mental illness. To acknowledge and grapple with the ramifications of discursive and material privilege involved in such situations, I include an analysis of Robert Desjarlais’s 1994 article “Struggling Along: The Possibilities for Experience among the Homeless Mentally Ill,” in which he investigates a similar phenomenon of being outside of structured sequential narrative time in the residents of a Boston shelter for the mentally ill. (shrink)

This paper explores the potential and relevance of an innovative sociological research method known as the Imitation Game for research in health care. Whilst this method and its potential have until recently only been explored within sociology, there are many interesting and promising facets that may render this approach fruitful within the health care field, most notably to questions about the experiential knowledge or ‘expertise’ of chronically ill patients. The Imitation Game can be especially useful because it provides a way (...) to map this experiential knowledge more systematically, without falling in the dual trap of either over-relying on in-depth, but highly specific phenomenological ‘insider’-approaches that are hard to generalize, or, alternatively, problematically reducing the rich life-worlds of patients to a set of indicators in a questionnaire. The main focus of this paper is theoretical and conceptual: explaining the Imitation Game method, discussing its usefulness in the health care domain, and exploring the ways in which the approach can be utilized for chronic illness care. The paper presents both a conceptual and empirical exploration of how the Imitation Game method and its underlying theoretical concepts of ‘contributory expertise’ and ‘interactional expertise’ can be transferred from the sociological realm to the field of health care, what kinds of insights can be gained from the method, which methodological issues it may raise, and what potentially fruitful research routes can be explored. I argue that the Imitation Game can be thought of as a ‘social learning experiment’ that simultaneously enables the participants to learn from each other’s perspectives, allows researchers to explore exciting new possibilities, and also offers the tools to intervene in the practice that is being studied. (shrink)

Within the caring science paradigm, variations of a method of interpretation inspired by the French philosopher Paul Ricoeur's theory of interpretation are used. This method consists of several levels of interpretation: a naïve reading, a structural analysis, and a critical analysis and discussion. Within this paradigm, the aim of this article is to present and discuss a means of creating distance in the interpretation and the text structure by using narration in a poetic language linked to the meaning of the (...) text. Ricoeur's ‘Hermeneutical function of distanciation’ will be introduced, and this concept of distanciation will be illustrated with reference to narrations from a study of patient's life experiences living with chronic illness and home mechanical ventilation in Denmark. Distanciation in the interpretation objectifies the text, and narration in a poetic language creates a particular kind of mediation in the interpretation. That narration represents an interpreted understanding of the whole, which facilitates an appropriate and evocative presentation of the interpreted data. This way of objectifying the text through narration can contribute yet another perspective to Ricoeur's rich and varied theory of interpretation. (shrink)

What is illness? Is it a physiological dysfunction, a social label, or a way of experiencing the world? How do the physical, social and emotional worlds of a person change when they become ill? And can there be well-being within illness? In this remarkable and thought-provoking book, Havi Carel explores these questions by weaving together the personal story of her own serious illness with insights and reflections drawn from her work as a philosopher. Carel shows how the (...) concepts and language used to describe illness today are inappropriate and misleading. Too often illness is viewed as a localised biological dysfunction while ignoring the actual experience of the ill person, their fears, their hopes, the way they interact with others and, ultimately, experience life. By focusing on the impact of illness on the ill person's life and reflecting on the experience of illness as lived from within, Carel shows how illness is a life-changing process rather than a limited physiological problem. Carel's fresh approach to illness raises some uncomfortable questions about how we all - whether healthcare professionals or not - view the ill and challenges us to become more thoughtful. "Illness" unravels the tension between the universality of illness and its intensely private, often lonely, nature. It offers a new way of looking at a matter that affects every one of us. For those who are ill, it offers insights on our ability to remain happy within the constraints of illness. (shrink)

BackgroundAll hospital trusts in Norway have clinical ethics committees. Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.MethodsTen next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care personnel who (...) could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.ResultsAll next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child’s impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead.All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.ConclusionsNone of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC’s role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion. (shrink)

A fundamental aim in caring practice is to understand patients' experiences of ill‐health. These experiences have a qualitative content and cannot, unlike thoughts and beliefs with conceptual content, directly be expressed in words. Nurses therefore face a variety of interpretive challenges when they aim to understand patients' subjective perspectives on disease and illness. The article argues that theories on social simulation can shed light on how nurses manage to meet these challenges. The core assumption of social simulationism is that (...) we do not understand other people by forming mental representations of how they think, but by putting ourselves in their situation in a more imaginative way. According to simulationism, any attempt to understand a patient's behavior is made on the basis of simulating what it is like to be that patient in the given context. The article argues that this approach to social interpretation can clarify how nurses manage to achieve aims of patient understanding, even when they have limited time to communicate and incomplete knowledge of patients' perspectives. Furthermore, simulation theory provides a normative framework for interpretation, in the sense that its theoretical assumptions constitute ideals for how nurses should seek to understand patients' experiences of illness. (shrink)

In this article, I propose that illness is philosophically revealing and can be used to explore human experience. I suggest that illness is a limit case of embodied experience. By pushing embodied experience to its limit, illness sheds light on normal experience, revealing its ordinary and thus overlooked structure. Illness produces a distancing effect, which allows us to observe normal human behavior and cognition via their pathological counterpart. I suggest that these characteristics (...) warrant illness a philosophical role that has not been articulated. Illness can be used as a philosophical tool for the study of normally tacit aspects of human existence. I argue that illness itself can be integral to philosophical method, insofar as it facilitates a distancing from everyday practices. This method relies on pathological or limit cases to illuminate normally overlooked aspects of human perception and action. I offer Merleau-Ponty’s analysis of the case of Schneider as an example of this method. (shrink)

OBJECTIVES: In treating critically ill neonates, situations occasionally arise in which aggressive medical treatment prolongs the inevitable death rather than prolonging life. Decisions as to limitation of neonatal medical intervention remain controversial and the primary responsibility of the generally unprepared family. This research was designed to study response patterns of expectant mothers towards treatment of critically ill and/or malformed infants. DESIGN/SETTING: Attitudes were studied via comprehensive questionnaires divided into three sections: 1-Sociodemographic data and prior personal experience with perinatal problems; (...) 2-Theoretical philosophical principles used in making medical ethical decisions; and 3-Hypothetical case scenarios with choices of treatment options. SUBJECTS AND RESULTS: Six hundred and fifty pregnant women were studied. Maternal birthplace (p = 0.005) and level of religious observance (p = 0.02) were strongly associated with the desire for maximally aggressive medical intervention in the hypothetical case scenario. Specific personal experiences such as infertility problems, previous children with serious mental or physical problems were not correlated with the selection of different treatment choices. Of the theoretical principles studied, only the desire to preserve life at all costs was significantly associated with the choice for maximal medical treatment (p = 0.003). CONCLUSIONS: Maternal ethnocultural background and philosophical principles more profoundly influenced medical ethical decision-making than did specific personal life experiences. (shrink)

A Christian bioethic needs to place the medical approach to sickness, suffering, and death within the context of redemption and the renewal of humanity in the image of God. This can be done by accounting for the way in which the disruptions of the human life-world that attend the illness experience manifest the structure of the problem of evil and point toward an answer that transcends the individual and the medical community. Further, the disease-oriented approach to medicine, when (...) understood in the context of the analogia entis, can be taken as an analogy for a deeper spiritual healing, and can thus become a vehicle through which one can minister to the disruptions of a patient's life-world. An appreciation of the analogical structure of healing provides the basis for a Christian ethic of care. (shrink)

What would you think if someone told you they heard voices when no one was there, or could sense the presence of the dead? In some historical periods and in some societies today these experiences are made sense of positively in religious or spiritual terms, but in modern western societies they tend to be regarded as symptomatic of mental illnesses such as schizophrenia. I argue that interpreting these experiences in terms of illness can negatively affect them, turning them into (...) something pathological when they needn't necessarily be so. I also discuss wider issues regarding illness, medicine, authority, interpretation and meaning.Export citation. (shrink)

Non-fiction graphic novels about illness and death created by patients and their loved ones have much to teach all readers. However, the bond of empathy made possible in the comic form may have special lessons for healthcare providers who read these texts and are open to the insights they provide.

What counts as health or ill health? How do we deal with the fallibility of our own bodies? Should illness and disease be considered simply in biological terms, or should considerations of its emotional impact dictate our treatment of it? Our understanding of health and illness had become increasingly more complex in the modern world, as we are able to use medicine not only to fight disease but to control other aspects of our bodies, whether mood, blood pressure, (...) or cholesterol. This collection of essays foregrounds the concepts of health and illness and patient experience within the philosophy of medicine, reflecting on the relationship between the ill person and society. Mental illness is considered alongside physical disease, and the important ramifications of society's differentiation between the two are brought to light. Health, Illness and Disease is a significant contribution to shaping the parameters of the evolving field of philosophy of medicine and will be of interest to medical practitioners and policy-makers as well as philosophers of science and ethicists. (shrink)

This conversational opinion article between two parties – Kate, a disability performance scholar and Sarah, an interdisciplinary artist-scholar with lived experience of disability – considers the dancing body as redeemer in the specific case of a dancer experiencing ‘chemo fog’, or Chemotherapy-Related Cognitive Impairment (CRCI) after undergoing oncological treatments for Hodgkin Lymphoma. This work draws on Pini’s own lived experience of illness (Pini & Pini, 2019) in dialogue with Maguire-Rosier’s study of dancers with hidden impairments (Gibson & (...) Maguire-Rosier, 2020). In an exploratory account based on an interview with one another, the authors ask: when our senses and perceptions of ourselves and the world we become are obfuscated, what is the nature of the new relationship between the performing self and its absent body/mind/world? How can we shape our narrative and articulate who we are, what we are doing or where we are going, if we are moving in the ‘fog’? Our discussion reveals how Pini’s dancing body elucidates healing, while recovering an agentic perspective in her experience of alienation and frustration tied to chemo fog and related impairments. With this work we offer an original perspective on how a dancing body can resist theoretical diagnosis. (shrink)

The concept of citizenship is becoming more and more prominent in specific fields, such as psychiatry/mental health, where it is constituted as a solution to the issues of exclusion, discrimination, and poverty often endured by the mentally ill. We argue that such discourse of citizenship represents a break in the history of psychiatry and constitutes a powerful strategy to counter the effects of equally powerful psychiatric labelling. However, we call into question the emancipatory promise of a citizenship agenda. Foucault's concept (...) of governmentality is helpful in understanding the production of the citizen subject, its location within the 'art of government', as well as the ethical and political implications of citizenship in the context of mental health. (shrink)