Illness

Type 1 diabetes (T1D) is a chronic illness that requires intensive lifelong management of blood glucose concentrations by means of external insulin administration. There have been substantial developments in the ways of measuring glucose levels, which is crucial to T1D self-management. Recently, continuous glucose monitoring (CGM) has allowed people with T1D to keep track of their blood glucose levels in near real-time. These devices have alarms that warn users about potentially dangerous blood glucose trends, which can often be shared with (...) ther people. CGM is consistently associated with improved glycemic control and reduced hypoglycemia and is currently recommended by doctors. However, due to the costs of CGM, only those who qualify for hospital provision or those who can personally afford it are able to use it, which excludes many people. In this paper, I argue that unequal access to CGM results in: (1) unjust health inequalities, (2) relational injustice, (3) injustice with regard to agency and autonomy, and (4) epistemic injustice. These considerations provide prima facie moral reasons why all people with T1D should have access to CGM technology. I discuss the specific case of CGM policy in the Netherlands, which currently only provides coverage for a small group of people with T1D, and argue that, especially with additional considerations of cost-effectiveness, the Dutch government ought to include CGM in basic health care insurance for all people with T1D. (shrink)

F Scott Fitzgerald spent the 1930s writing about illness themes while he struggled with tuberculosis, insomnia, alcoholism, heart disease and the mental illness of his wife Zelda. During this decade, Fitzgerald published six stories that prominently feature hospitals and healthcare professionals. These stories, the ‘doctor–nurse stories’, along with nine additional published stories that touch upon medical themes have not previously been investigated as a thematic grouping. This paper explores the 1930s stories in the context of Fitzgerald's life and career in (...) order to highlight his significant yet previously undervalued contribution to the canon of illness literature and his work's relevance to the field of literature and medicine. (shrink)

Rapidly advancing technologies in the field of extracorporeal cardiopulmonary resuscitation (ECPR) have presented a new challenge in accurate neuroprognostication following cardiac arrest. Determination of brain state informs the prognostic picture and allows providers to begin effective communication regarding likelihood of meaningful neurological recovery as defined by patients or family members. The evolving role of sedation during ECPR and its impacts on ethical tension in decision-making is reviewed. Work surrounding the advancing field of neuroprognostication after cardiac arrest and hypothermia is summarized (...) and implications of premature withdrawal of life-sustaining treatments are discussed. Advances that improve predictive value for neurological recovery are utilized in affirming and discussing the implications for end-of-life wishes of individuals in the setting of intensive resuscitative therapies. (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)

Various historical sources from the Renaissance--including transcripts of trials for witchcraft, writings on demonology and textbooks of pharmaceutical botany--describe vegetal ointments prepared by women accused of witchcraft and endowed with marked psychoactive properties. Here, we examine the botanical composition and the possible pharmacological actions of these ointments. The results of our study suggest that recipes for narcotic and mind-altering salves were known to Renaissance folk healers, and were in part distinct from homologous preparations of educated medicine. In addition, our study (...) reveals an unexpected connection of these vegetal psychotropes with archaic chtonic beliefs, confirming the tight association between rituals and cults entered on the Underworld and the image of the Medieval witch. (shrink)

The numerous researches devoted to 'jaundice' during the Second World War have brought to light the existence of an infectious type of hepatic jaundice or 'homologous serum jaundice' following parenteral injection of vaccines containing human serum and blood transfusions, which were carried out on a large scale at the time. This type of serum jaundice was then gradually differentiated from 'catarrhal', contagious or epidemic jaundice by clinical trials along with large series of animal studies. Finally, the epidemiological, clinical and biological (...) data obtained made it possible to establish, between 1944 and 1954, the viral etiology of these two types of jaundice: the A virus, present in the patients' blood and stools, was considered to be the agent responsible for epidemic hepatitis; the B virus, present primarily in the blood, was held to be responsible for serum hepatitis. (shrink)

This piece returns to the writer’s memoir essays about her mother’s chronic lung disease to examine the relationship between the act of caregiving and the act of writing. In arguing for important differences between the clinical, healing imperatives of narrative medicine and the primacy for the writer of self-reflection, personal need and career, the essay demonstrates how writing remains in many ways at odds with the obligations and the hopes of caregiving. At the same time, the essay argues that writing (...) her mother’s stories of illness holds the potential for both honor and mutuality—and can, in fact, constitute a form of caregiving. (shrink)

Currently, patients are expected to take control over their health and their life and act as independent users and consumers. Simultaneously, health care policy demands patients are expected to self manage their disease. This article critically questions whether this is a realistic expectation. The paper presents the auto-ethnographic narrative of the first author, which spans a period of 27 years, from 1985 to 2012. In total nine episodes were extracted from various notes, conversations and discussions in an iterative process. Each (...) of these episodes was condensed around a ‘critical moment’ as perceived by the “self”. The critical moments in the illness process vary between newly encountered problems with basic needs and mourning, to renewed strength and the desire to grow, embracing new situations. Being confronted with and living with a chronic illness involves periods of anxiety and self centredness alternating with strength and advocating the interests of peer-patients. These episodes of emotion, confusion and refinding a balance have a cyclic pattern. The narrative illustrates the vulnerability and dependency of a patient with a chronic disease. The discussion relates this to mainstream dominant views on patients ‘in control of their own life’. The narrative illustrates, that the vulnerability and dependency of the patient are key factors to take into account in health care policy. The narrative provides a counter story, challenging current thinking in terms of strength, selfmanagement, patients’ own control and independent role. (shrink)

In At the Will of the Body , Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait. Ill people are more than victims of disease or patients of medicine they are wounded storytellers. People tell stories to make sense of their suffering when they turn their diseases into (...) stories, they find healing. Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known--Gilda Radner's battle with ovarian cancer--to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic. Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new. (shrink)

The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients’ understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the (...) article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates. Three potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients’ views and the medico-professional view of disease. Kon’s four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research. The combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients’ actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected. (shrink)

The aim of this article is to present a conceptual review and analysis of symptom understanding. Subjective bodily sensations occur abundantly in the normal population and dialogues about symptoms take place in a broad range of contexts, not only in the doctor’s office. Our review of symptom understanding proceeds from an initial subliminal awareness by way of attribution of meaning and subsequent management, with and without professional involvement. We introduce theoretical perspectives from phenomenology, semiotics, social interactionism, and discourse analysis. Drew (...) Leder’s phenomenological perspectives deal with how symptom perception occurs when any kind of altered balance brings forward a bodily attention. Corporeality is brought to explicit awareness and perceived as sensations. Jesper Hoffmeyer’s biosemiotic perspectives provide access to how signs are interpreted to attribute meaning to the bodily messages. Symptom management is then determined by the meaning of a symptom. Dorte E. Gannik’s concept “situational disease” explains how situations can be reviewed not just in terms of their potential to produce signs or symptoms, but also in terms of their capacity to contain symptoms. Disease is a social and relational phenomenon of containment, and regulating the situation where the symptoms originate implies adjusting containment. Discourse analysis, as presented by Jonathan Potter and Margaret Wetherell, provides a tool to notice the subtle ways in which language orders perceptions and how language constructs social interaction. Symptoms are situated in culture and context, and trends in modern everyday life modify symptom understanding continuously. Our analysis suggests that a symptom can only be understood by attention to the social context in which the symptom emerges and the dialogue through which it is negotiated. (shrink)

Recent discourses about the legitimacy of homeopathy have focused on its scientific plausibility, mechanism of action, and evidence base. These, frequently, conclude not only that homeopathy is scientifically baseless, but that it is “unethical.” They have also diminished patients’ perspectives, values, and preferences. We contend that these critics confuse epistemic questions with questions of ethics, misconstrue the moral status of homeopaths, and have an impoverished idea of ethics—one that fails to account either for the moral worth of care and of (...) relationships or for the perspectives, values, and preferences of patients. Utilitarian critics, in particular, endeavour to present an objective evaluation—a type of moral calculus—quantifying the utilities and disutilities of homeopathy as a justification for the exclusion of homeopathy from research and health care. But these critiques are built upon a narrow formulation of evidence and care and a diminished episteme that excludes the values and preferences of researchers, homeopaths, and patients engaged in the practice of homeopathy. We suggest that homeopathy is ethical as it fulfils the needs and expectations of many patients; may be practiced safely and prudentially; values care and the virtues of the therapeutic relationship; and provides important benefits for patients. (shrink)

Leonard L. Heston, M.D. is a Professor of Psychiatry at The University of Washington and is the Director of The Washington Institute for Mental Illness Training and Research. Dr. Heston writes about "a QUIET revolution [which] has been occurring in psychiatry" . Dr. Heston's "new psychiatry" focuses on the "actual study of the brain as a biologic tissue" and avoids "elaborate theorizing, guru-isms, blaming of mothers for unhappiness, backbiting among contending schools, or [popular and simple] prescriptions for instant mental health. (...) Such topics were a product of prescience..." . Heston wishes to distance himself from traditional Freudianism. Most importantly, according to Heston, his biological and scientific psychiatry portends greater hope for the "nearly one person in five [who] will develop a major psychiatric illness...". (shrink)

Mucchielli clearly and systematically reviews the history of theories of psychosomatic medicine, criticizing the dominant modern ideas such as "conversion," "régression," and "inadaptation." The failure to eliminate dualisms has been chiefly the failure to discern distinct levels of existence and the complex relations between them: to assert a difference between the organic level and the conscious level need not lead us into an impass of dualism. Mucchielli shows that not all psychosomatic disorders are psycogenetic, but that there are organic illnesses (...) with definite organic etiology. He uses Descartes as a model for style and organization, and revives the relatively ignored Descartes of "the third idea of medicine" and "the union of soul and body," showing how and why Descartes himself did not develop an adequate medical theory of psychosomatic illness. The critical discussions of Dunbar, Alexander, Freud, Pavlov, Boss and others are sharp and convincing.—C. D. (shrink)

If you consult a medical textbook to learn about the pathogenesis of Lyme disease, you will find a standard narrative. You will learn the disease is caused by the spirochete Borrelia burgdorferi, which is transmitted to people by blacklegged ticks . You will also learn that the natural reservoir for spirochetes in the Northeast is the white-footed mouse , and also likely be told that white-tailed deer are the primary host for gravid female ticks. And that is pretty much the (...) whole story. This limited perspective that considers only four species—spirochetes, mice, ticks, and deer—is entrenched by a reductionist paradigm, one that belies the nature of a .. (shrink)

An apparent ethical dilemma arises when physicians consider enrolling their patients in randomized clinical trials. Suppose that a randomized clinical trial comparing two treatments is in progress, and a physician has an opinion about which treatment is better. The physician has a duty to promote the patient's best medical interests and therefore seems to be obliged to advise the patient to receive the treatment that the physician prefers. This duty creates a barrier to the enrollment of patients in randomized clinical (...) trials.1-10 Two strategies are often used to resolve the dilemma in favor of enrolling patients in clinical trials. (shrink)

The subject matter of ethics is morality, and ethics deals with it in four different though closely related ways: by analysis, by criticism, by norm construction, and by moral pragmatics.

This work is a reappraisal of the nature of psychiatric illness and therapeutic approaches to it. It looks at how current classifications and treatment derive from a century-old framework which is now incoherent.

However much the three great traditions of medicine - Galenic, Chinese and Ayurvedic - differed from each other, they had one thing in common: scholarship. The foundational knowledge of each could only be acquired by careful study under teachers relying on ancient texts. Such medical knowledge is special, operating as it does in the realm of the most fundamental human experiences - health, disease, suffering, birth and death - and the credibility of healers is of crucial importance. Because of this, (...) scholarly medical knowledge offers a rich field for the study of different cultural practices in the legitimation of knowledge generally. The contributors to this volume are all specialists in the history or anthropology of these traditions, and their essays range from historical investigations to studies of present-day practices. (shrink)

Hospital environments tend to be very ineffective, resulting in the lost of valuable resources at all times. Current approaches that address this problem tend to ignore the patient, looking only at the economics. In our view, these systems must be patient centred, and for that reason, we look at the development of tools that can improve the use of timely resources in such environments. The solution presented in this work consists in the use of personal memory assistants to monitor single (...) entities, linked to a centralized management system. The main goal is to regulate key stakeholders, such as physicians, nurses or devices, in terms of their daily activities, location or tasks. It is also presented the architecture of such system, a prototype and the expected results. (shrink)