Illness

In nursing ethics the role of narratives and dialogue has become more prominent in recent years. The purpose of this article is to illuminate a relational-narrative approach to ethics in the context of palliative nursing. The case study presented concerns a difficult relationship between oncology nurses and a husband whose wife was hospitalized with cancer. The husband’s narrative is an expression of depression, social isolation and the loss of hope. He found no meaning in the process of dying and death. (...) The oncology nurses were not able to recognize his emotional and existential problems. A narrative perspective inspired by relational ethics indicates that participants may develop a relational narrative that seeks good for all involved in a situation. In palliative nursing this entails open communication about the fragility of life and approaching death. In relational narratives, answers to these ethical dilemmas are co-authored, contingent and contextual. (shrink)

It is not uncommon that nurses are unable to meet the normative expectations of chronically ill patients. The purpose of this article is to describe and illustrate Walker’s expressive-collaborative view of morality to interpret the normative expectations of two women with multiple sclerosis. Both women present themselves as autonomous persons who make their own choices, but who also have to rely on others for many aspects of their lives, for example, to find a new balance between work and social contacts (...) or to find work. We show that their narratives of identity, relationship and value differ from the narratives that others use to understand and identify them. Since identities, relationships and values give rise to normative expectations, in both cases there is a conflict between what the women expect of their caregivers and vice-versa. The narratives also show that two similar persons with multiple sclerosis may need very different care. This implies that nurses caring for such persons should listen carefully to their stories and reflect on their own perceptions of self. (shrink)

Anyone who thinks contemporary American society is hopelessly contentious and lacking in shared values has probably not been paying attention to the way the popular media portray the hospice movement. Over and over, we are told such things as that “Humane care costs less than high-tech care and is what patients want and need,” that hospices are “the most effective and least expensive route to a dignified death,” that hospice personnel are “heroic,” that their “compassion and dedication seem inexhaustible,” and (...) that “few could argue with the powerful message that it is better [for dying patients] to leave wrapped in the love of family and care givers than locked in the cold, metallic embrace of a machine.“. (shrink)

Point-of-care testing (POCT) is a sensitive, specific and rapid form of testing for the presence of HIV antibodies. Post-exposure prophylaxis for HIV infection can reduce seroconversion rates by up to 80%. Needlestick injuries are the second commonest cause of occupational injury in the NHS and 20% of these occur during operations. In the NHS, in order to protect staff and patients from the risk of bloodborne viruses such as HIV, it is mandatory to report such injuries; however, numerous studies have (...) shown that many groups, particularly doctors, are reluctant to do so. This article outlines the arguments for and against the introduction of preoperatively seeking consent from patients to have their blood tested for HIV via POCT in order to improve the reporting rates of needlestick injuries incurred during surgery and to protect staff from infection. (shrink)

OBJECTIVES: To measure the preference regarding disclosure of a serious diagnosis, and its determinants, of the Lebanese public. DESIGN AND SETTING: Non-random sample survey of 400 persons interviewed in health care facilities in Beirut in 1995. RESULTS: Forty-two per cent of respondents generally preferred truth not to be disclosed directly to patients. Preference for disclosure was associated with younger age, better education and tendency to rapport-building with physicians. There were no meaningful associations between place of residence (urban/rural), level of religious (...) practice, or religious affiliation, and preference for disclosure. CONCLUSIONS: Under one plausible interpretation, this survey suggests that the expectation for concealment will decrease as the advantage of knowledge in better coping with disease is understood by an increasingly better educated public, and that the Lebanese public will increasingly come to expect direct and full disclosure of serious diagnoses. (shrink)

The passing on of information to GPs by genito-urinary doctors is to be encouraged but is not always possible and ultimately the patient's wishes and confidentiality must be respected if sexually transmitted diseases and HIV infection are to be controlled. Infected health-care workers should seek counselling and medical support and clear guidelines from professional organisations which are in existence. However, they will only do so if strict confidentiality is maintained and assurance about future employment can be given.

I read with great bewilderment the unconvincing arguments of Peter F. Omonzejele in his article “Ethical Challenges Posed by the Ebola Virus Epidemic in West Africa” published in the 11 issue of the Journal of Bioethical Inquiry. While the author glaringly mixed up anthropological issues concerning the hygiene of hand-washing and safe burials in an article with a title clearly focused on ethical challenges, he failed to establish how the current Ebola epidemic ravaging some West Africa countries made these human (...) practices ethical challenges. Anecdotal examples cited in the article fit entirely into the realm of anthropological and sociological issues fuelling the spread of Ebola but are not in any way related to ethical challenges. The title was either misleading or the author deliberately discussed anthropological/sociological issues tangentially in an article supposedly written on ethical issues.The author also contradicted himself, having categorized as a compelling need t .. (shrink)

Background: There is a shortage of reports on what potential recipients of implantable cardioverter–defibrillators need to be informed about and what role they can and want to play in the decision-making process when it comes to whether or not to implant an ICD.Aims: To explore how patients with heart failure and previous episodes of malignant arrhythmia experience and view their role in the decision to initiate ICD treatment.Patients and methods: A qualitative content analysis of semistructured interviews was used. The study (...) population consisted of 31 outpatients with moderate heart failure at the time of their first ICD implantation.Setting: The study was performed at Sahlgrenska University Hospital, Göteborg, Sweden.Results: None of the respondents had discussed the alternative option of receiving treatment with anti-arrhythmic drugs, the estimated risk of a fatal arrhythmia, or the expected time of survival from heart failure in itself. Even so, very little criticism was directed at the lack of information or the lack of participation in the decision-making process. The respondents felt that they had to rely on the doctors’ recommendation when it comes to such a complex and important decision. None of them regretted implantation of the ICD.Conclusions: The respondents were confronted by a matter of fact. They needed an ICD and were given an offer they could not refuse, simply because life was precious to them. Being able to give well-informed consent seemed to be a matter of less importance for them. (shrink)

Engaging in self-narrative is often touted as a powerful antidote to the bad effects of illness. However, there are various examples of what may broadly be termed “aversion” to illness narrative. I group these into three kinds: aversion to certain types of illness narrative; aversion to illness narrative as a whole; and aversion to illness narrative as an essentially therapeutic endeavor. These aversions can throw into doubt the advantages claimed for the illness narrator, including the key benefits of repair to (...) the damage illness does to identity and life-trajectory. Underlying these alleged benefits are two key presuppositions: that it is the whole of one’s life that is narratively unified, and that one’s identity is inextricably bound up with narrative. By letting go of these assumptions, illness narrative advocates can respond to the challenges of narrative aversions. (shrink)

BACKGROUND: Little is known about how hospitalized patients share decisions with physicians. METHODS: We conducted an observational study of patient-doctor communication on an inpatient medicine service among 18 hospitalized patients and 9 physicians. A research assistant (RA) approached newly hospitalized patients and their physicians before morning rounds and obtained consent. The RA audio recorded morning rounds, and then separately interviewed both patient and physician. Coding was done using integrated analysis. RESULTS: Most patients were white (61%) and half were female. Most (...) physicians were male (66%) and of Southeast Asian descent (66%). All physicians explained the plan of care to the patients; most believed that their patient understood. However, many patients did not. Physicians rarely asked the patient for their opinion. In all those cases, the decision had been made previously by the doctors. No decisions were made with the patient. Patients sometimes disagreed. CONCLUSIONS: Shared decision-making may not be the norm in hospital care. Although physicians do explain treatment plans, many hospitalized patients do not understand enough to share in decisions. When patients do assert their opinion, it can result in conflict. PRACTICE IMPLICATIONS: Some hospitalized patients are interested in discussing treatment. Improving hospital communication can foster patient autonomy. (shrink)

The main objective in this chapter is to examine the role of judgments of rationality in the current understanding of psychiatric disorders. To what extent are the criteria for classification and diagnosis independent of judgments of rationality? The typical symptoms of many psychiatric disorders are described as instances of epistemic, procedural, or emotional irrationality, and references to such forms of irrationality are frequently made in the current classificatory and diagnostic criteria for schizophrenia, dementia, depression, and personality disorders. That said, the (...) chapter defend the view that irrationality is neither necessary nor sufficient for a behavior to be characterized as symptomatic of a psychiatric disorder. (shrink)

Although much has been written about how physicians react to their own illness, the subject of how health-care workers react differently to sick physicians compared to ordinary patients is largely unstudied (Klitzman 2008; Mandell and Spiro 1987; Mullan 1985; Pinner and Miller 1952; Sachs 1989; Schneck 1998). As a senior physician-administrator admitted to my hospital for a major illness, I was treated as a physician-administrator and local celebrity, rather than an ordinary patient, by everybody from physicians to janitors. Positive features (...) of this special treatment included a complimentary private room, a magnificent bouquet of flowers, and great respect by hospital personnel. However, this special treatment .. (shrink)

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

A number of theoretical ideas have emerged recently in the legal, bioethical and philosophical fields that could usefully be applied to these and other issues ...

Depuis le célèbre essai de Georges Canguilhem sur le normal et le pathologique publié initialement en 1943 et dont l’un des objectifs était la clarification des concepts de santé et de maladie, une littérature philosophique abondante, principalement anglo-saxonne, s’est attachée à définir ces concepts et à analyser leur statut. Le principal débat de ce domaine émergent de la philosophie de la médecine porte sur la question : peut-on décrire la santé et la maladie comme des phénomènes naturels ou s’agit-il d’états (...) qui sont déterminés par des valeurs?Tous les textes présentés dans ce volume ont participé de cette controverse. Ceux de la première section accordent une part importante à la composante biologique. Ceux de la seconde donnent le primat à la notion d’action. Ceux de la dernière section mettent en question l’utilité ou la possibilité même de définir les deux concepts. (shrink)

In this paper we claim that individual subjects do not have so much control over sleep that it is aptly characterized as a personal choice; and that normative implications related to public health and sleep hygiene do not necessarily follow from current findings. It should be true of any empirical study that normative implications do not necessarily follow, but we think that many public health sleep recommendations falsely infer these implications from a flawed explanatory account of the decision to sleep: (...) the consumer choice view. This view, which we criticize here, proposes that sleep duration and sleep quality be understood as one choice among many. (shrink)

As we die, our respiratory pattern is altered and we seem to gasp and struggle for each breath. Such gasping is commonly seen as a clear sign of dyspnoea and suffering by families and loved ones, however, it is unclear whether it is perceived at all by the dying person. Narcotics and sedatives do not seem to affect these gasping respirations. In this issue of the Journal of Medical Ethics, we are asked to consider whether the last gasp of a (...) dying patient could be or, perhaps, even should be avoided by administering neuromuscular blockers to palliate dying patients. For many reasons, such as our current failure to alleviate pain and distress, stories of inadequate analgesia and sedation in critically ill paralysed patients and the inability to know the intent—whether to palliate or to euthanise—it would seem that administering neuromuscular blockers should not be ethically permissible. (shrink)

This anthology provides a collection of new essays on ethical and philosophical issues that concern the development, dispensing, and use of pharmaceuticals. It brings together critical ethical issues in pharmaceutics that have not been included in any collection (e.g., the ethics of patients as researchers). In addition, it includes philosophical issues that are not within the traditional domain of applied ethics. For example, a game-theoretic approach to combating the emergence of antibiotic-resistent pathogens by spreading altruism. A tripartite distinction provides an (...) organized series of discussions that shows the interrelatedness of philosophical issues from the creation of pharmaceuticals, the creation of demand for them, through their delivery to their ultimate consumption. (shrink)

The article talks about the social consequences of the so called Standard Analysis of Knowledge. Gettier cases demonstrate that human beings would need superhuman powers in order to fullfill the truth condition of the Standard Analysis of Knowledge. When Gettier cases are told, the storyteller usually omits to report who noticed what was the truth in this case and how he or she informed the protagonist of the Gettier case about it. This is done that way in order to hide (...) the fact that only the eye of God could have established the truth in a Gettier case because it was hidden from the protagonist by some specific circumstance. When people understand their own knowledge according to the Standard Analysis of Knowledge, that means that they are very sure of themselves and their capabilities. They orientate themselves by the rigorous standard of truth instead of some more moderate claim like, e.g., the helpfulness of a certain belief in the fight of everyday life. Such persons tend to act some teachers who judge their pupils only by their mistake (failure to achieve the truth) instead of by their (humble but admirable) achievements. When such persons meet weaker epistemic subjects, like pupils, students, laypeople, or chronically ill persons, their assertiveness can have a negative effect on their self-confidence. By undermining their self-confidence they will make these people unsure and, hence, ignorant even of the things they normally do know. Would the Standard Analysis of Knowledge therefore be the appropiate theoretical concept for as schooling of chronically ill persons - like in the British Expert Patients Programm - on the subject of their illness? Such a schooling is highly desirable from the ethical (increase of autonomy of chronically ill persons) as well as from the social standpoint (decrease of healthcare costs). However, in order to make weak people stronger as epistemic subjects, truth, as an absolute goal, is unrewarding. Knowledge about their own health condition needs to have the function of helping them to do things better than up to now - better, but not perfect as the truth condition (which is perfect) of the Standard Analysis of Knowledge requires. In sum, in the social context of stronger and weaker epistemic subjects the truth condition of knowledge turns out to be inhuman and should be substituted by a set of other conditions that focus on what can help to increase the ability to act of the (weaker) expistemic subject. (shrink)

One bi-lingual - hungarian-ENGLISH - meditation and research about the Illness and the Living Being. Concentrated, of course, to the specific HUMAN reporting to them. The book investigates philosophically the issue of human illness and its organic pertinence to the meaning of human life starting from the recognition that the dangerous encounter with the experience of illness is an unavoidable – and as such crucial – experience of the life of any living being. As for us humans, there is probably (...) no mortal man who has never suffered of some – any! – kind of disease from his birth to the end of his life… Illness is therefore an experience or outright a danger of existence and its possibility, as well as a way of being that nobody has ever been and will ever be ontological or existentially exempted from. So, it may well be “arbitrary” or “accidental” which disease affects which being or person, when and to what degree, in what way, etc., but it is factually unavoidable that in the course of one’s entire life – from its very beginning to its very end – one would never fall ill in some respect. The paper discusses this issue by the ontological investigation of possibility. Together with the analyses about of the origins and history of the MEDICINE. -/- The english CONTENTS -/- Illness – A Possibility of the Living Being Prolegomena to the Philosophy of Human Illness ............................................. 127 -/- Excursus Sketchy considerations regarding the problems of Christian medicine and Christian healing ...................................................... 135 -/- A dialogue-attempt with Aristotle: Dynamis, energeia, entelecheia, and steresis ...................................................... 147 . (shrink)

An essay review of Havi Carel, 'Phenomenology of Illness' (OUP 2015).

Many people report that reading first-person narratives of the experience of illness can be morally instructive or educative. But although they are ubiquitous and typically sincere, the precise nature of such educative experiences is puzzling—for those narratives typically lack the features that modern philosophers regard as constitutive of moral reason. I argue that such puzzlement should disappear, and the morally educative power of illness narratives explained, if one distinguishes two different styles of moral reason: an inferentialist style that generates the (...) puzzlement and an alternative exemplarist style that offers a compelling explanation of the morally educative power of pathographic literature. (shrink)

The idea that certain experiences of suffering can be positively transformative has a central role in the practical and pastoral aspects of Christian theology. It is easy to identify different historical and doctrinal reasons why physical, mental, and spiritual suffering enjoy a central role in that tradition, but less easy to articulate and justify the provocative claim that suffering can be positively transformative. Indeed, some critics protest that the very idea is deeply offensive, on moral, theological, and psychological grounds, and (...) those critics have included many Christian laypeople and theologians.1 Given the prospects and problems of claims about transformative suffering, one ought to welcome Anastasia... (shrink)

In this paper, we argue that certain theoretical conceptions of health, particularly those described as ‘biomedical’ or ‘naturalistic’, are viciously epistemically unjust. Drawing on some recent work in vice epistemology, we identity three ways that abstract objects (such as theoretical conceptions, doctrines, or stances) can be legitimately described as epistemically vicious. If this is right, then robust reform of individuals, social systems, and institutions would not be enough to secure epistemic justice: we must reform the deeper conceptions of health that (...) underlie them. (shrink)

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

We survey several ways in which the structures and norms of medicine and healthcare can generate epistemic injustice.

All people are vulnerable to having their self-concepts shaped by others. This article investigates that vulnerability using a theory of narrative self-constitution. According to narrative self-constitution, people depend on others to develop and maintain skills of self-narration and they are vulnerable to having the content of their self-narratives co-authored by others. This theoretical framework highlights how vulnerability to co-authoring is essential to developing a self-narrative and, thus, the possibility of autonomy. However, this vulnerability equally entails that co-authors can undermine autonomy (...) by contributing disvalued content to the agent’s self-narrative and undermining her authorial skills. I illustrate these processes with the first-hand reports of several women who survived sexual abuse as children. Their narratives of survival and healing reveal the challenges involved in developing the skills required to manage vulnerability to co-authoring and how others can help in this process. Finally, I discuss some of the implications of co-authoring for the healthcare professional and the therapeutic relationship. (shrink)

Why do some addicted people chronically fail in their goal to recover, while others succeed? On one established view, recovery depends, in part, on efforts of intentional planning agency. This seems right, however, firsthand accounts of addiction suggest that the agent’s self-narrative also has an influence. This paper presents arguments for the view that self-narratives have independent, self-fulfilling momentum that can support or undermine self-governance. The self-narrative structures of addicted persons can entrench addiction and alienate the agent from practically feasible (...) recovery plans. Strategic re-narration can redirect narrative momentum and therefore support recovery in ways that intentional planning alone cannot. (shrink)

The present paper constitutes a development of the position that illness, whether bodily or mental, should be analyzed as an incapacitating failure of bodily or mental capacities, respectively, to realize their functions. The paper undertakes this development by responding to two critics. It addresses first Szasz’s continued claims that (1) physical illness is the paradigm concept of illness and (2) a philosophical analysis of mental illness does not shed any light on the social and legal role of the idea. Then, (...) in reply to Wakefield, the aim is to defend the account as an interpretation of Aristotle and to argue that this Aristotelian view of mental illness is preferable to one that rests on a supposed value free account of human function. More generally the discussion points to the fact that both Wakefield and Szasz rely on a number of metaphysical assumptions about the supposedly empirical nature of medical diagnosis, about the relation between facts and values, and about mind and body (among others), which are open to challenge. In particular the paper indicates an aristotelian approach to the fusion, in the natural world, of so-called facts and values, and the relevance of this fusion to the analysis of the concept of illness. This suggests the debate over distinct conceptions of that concept must both illumine and be illuminated by these deeper metaphysical questions. (shrink)

Vaccine refusers often seem motivated by disgust, and they invoke ideas of purity, contamination and sanctity. Unfortunately, the emotion of disgust and its companion ideas are not directly responsive to the probabilistic and statistical evidence of research science. It follows that increased efforts to promulgate the results of vaccine science are not likely to contribute to increased rates of vaccination among persons who refuse vaccines because of the ‘ethics of sanctity’. Furthermore, the fact that disgust-based vaccine refusal is not monolithic (...) – vaccine refusers manifest disgust at different objects and invoke different ideas about purity and contamination – further complicates public health efforts to increase vaccination rates. (shrink)

The ethics of medically-authorized limb amputation in individuals with Body integrity identity disorder (BIID) remains extremely controversial. One factor to consider is the putative locus of a disease process, and whether the proposed treatment--in this case, limb amputation—reasonably addresses the issue of what organ is mediating the patient’s complaint.

Palliative care is a recent branch of health care. The doctors, nurses, and other professionals involved in it took their inspiration from the medieval idea of the hospice, but have now extended their expertise to every area of health care: surgeries, nursing homes, acute wards, and the community. This has happened during a period when patients wish to take more control over their own lives and deaths, resources have become scarce, and technology has created controversial life-prolonging treatments. Palliative care is (...) therefore faced with more ethical problems that other areas of health care. This book, by a clinician, teacher, and writer on health care ethics, has been written to provide all those who care for the terminally ill--doctors, nurses, social workers, clergymen, physiotherapists--with the concepts and principles which will assist them with difficult decisions. It challenges many received doctrines of palliative care, but its well-illustrated central theme is that technical expertise must be controlled by humane, non-technical judgments. (shrink)

Biobanks are vital for diagnostic, epidemiological and research purposes following radiation disasters, but there is a history of delays in this type of research and specifically in setting up important resources including tissue repositories following the rare occurrence of these events. Here, we argue that one key lesson from Chernobyl and Fukushima has still not been learned: it is essential to agree on a proactive international plan for a radiation disaster biobank and accompanying data collection before the next disaster occurs.

We present an ontology of pain and of other pain-related phenomena, building on the definition of pain provided by the International Association for the Study of Pain (IASP). Our strategy is to identify an evolutionarily basic canonical pain phenomenon, involving unpleasant sensory and emotional experience based causally in localized tissue damage that is concordant with that experience. We then show how different variant cases of this canonical pain phenomenon can be distinguished, including pain that is elevated relative to peripheral trauma, (...) pain that is caused neuropathically (thus with no necessary peripheral stimulus), and pain reports arising through deception either of self or of others. We describe how our approach can answer some of the objections raised against the IASP definition, and sketch how it can be used to support more sophisticated discrimination of different types of pain resulting in improved data analysis that can help in advancing pain research. (shrink)

Lionel Penrose (1898–1972) was an important leader during the mid-20th century decline of eugenics and the development of modern medical genetics. However, historians have paid little attention to his radical theoretical challenges to mainline eugenic concepts of mental disease. Working from a classification system developed with his colleague, E. O. Lewis, Penrose developed a statistically sophisticated and clinically grounded refutation of the popular position that low intelligence is inherently a disease state. In the early 1930s, Penrose advocated dividing “mental defect” (...) (low intelligence) into two categories: “pathological mental defect,” which is a disease state that can be traced to a distinct genetic or environmental cause, and “subcultural mental defect,” which is not an inherent disease state, but rather a statistically necessary manifestation of human variation in intelligence. I explore the historical context and theoretical import of this contribution, discussing its rejection of typological thinking and noting that it preceded Theodosius Dobzhansky’s better-known defense of human diversity. I illustrate the importance of Penrose’s contribution with a discussion of an analogous situation in contemporary medicine, the controversial practice of using human growth hormone injections to treat “idiopathic short stature” (mere diminutive height, with no distinct cause). I show how Penrose’s contributions to understanding human variation make such treatments appear quite misguided. (shrink)

Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful albeit unrealistic. However, recent scienti c breakthroughs in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally. In 2001, when preimplantation genetic diagnosis (PGD) and in vitro fertilisation (IVF), enabled parents to select between multiple embryos, Julian Savulescu introduced the principle of procreative bene cence (PPB), stating that parents have the obligations to choose (...) the child that is expected to have the best life. In this paper I argue that accepting the PPB and the consequentialist principle (CP) that two acts with the same consequences are morally on par, commits one to accepting the parental obligation of genetically enhancing one's children. (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)