This book exploits the power of phenomenological methods to access and describe lived moral experiences of pain and suffering for patients, their families and the wider community. Creating new fields of communication for patients, their family members and health professionals in shared decision making processes, this book builds on knowledge about suffering to help and guide correct action in preventing and relieving chronic pain and improving systems of care. It offers a new phenomenology for understanding moral experience in (...) class='Hi'>serious illness and suffering, and its implication for policy, practice and research. A series of applied chapters, looking at individual experiences of suffering and care experiences, present some areas of ethical inquiry, including: pain and suffering maternal care ethics evaluation and moral deliberation about treatment options decision-making and moral agency end-of-life experiences of care. Exploring how moral phenomenology could provide fruitful alternatives to traditional frameworks in bioethics, this is an important addition to the literature. It will be of interest to scholars and students of bioethics and phenomenological methods in the health and human services. (shrink)

In spite of the French public policies implemented to meet the needs of students with disability and the promulgation of laws promoting inclusion in higher education, many barriers leading to social exclusion remain. The present paper analyzes the impact of health issues on young people educational path using com semi-structured interviews with high school and university students affected by serious and chronic diseases (n = 19) from a sociological survey. The objective was to identify the needs and aspirations (...) of these young people with disability to propose a suitable response to those needs, while also taking into account existing resources using a co-constructive approach. The analysis highlights the disconnect between the different domains of social interaction in which disabled students are included. Parental support and the transition between upper secondary and higher education are hindered by a lack of institutional cohesion. We investigate how stakeholders in the three institutional domains concerned with the disabled students (educational, medical and family) interact with each other using a systemic and polycentric approach. Our study shows that that a mediator is required to help solve the problems encountered by students with serious and chronic diseases as one possible approach to address their needs. (shrink)

Judging by their contribution to the global burden of death and disability, chronic, non-communicable diseases are the most serious health challenge facing the world today. The statistics tell a frightening story. Over 35 million people died from chronic diseases in 2005 — principally cardiovascular disease, cancer, and chronic respiratory disease. Driven by population growth and population ageing, deaths from non-communicable diseases are expected to increase by 17% over the period 2005-2015, accounting for 69% of (...) global deaths by 2030.Cardiovascular disease, the leading cause of death in all regions except sub-Saharan Africa, is estimated to rise from 17.1 million deaths to 23.4 million deaths. Cancer deaths will increase from 7.4 million to 11.8 million over the same period. Due to population growth, mergers and acquisitions, and the marketing of global cigarette brands in developing countries, deaths from tobacco will rise from 5.4 million per year, through 6.4 million, to 8.3 million by 2030. These figures include a doubling in tobacco deaths in low- and middle-income countries from 3.4 million to 6.8 million lives annually. By 2015, smoking will cause 50% more deaths than HIV/AIDS. (shrink)

This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of person- and (...) patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the enacted and negotiated forms of person- and patienthood are culturally embedded and normatively charged. In order to examine and investigate this twofold aim, an empirical material has been gathered that comprises observations and in-depth interviews with patients and caregivers at four haemodialysis units, one in Riga, Latvia, and three in Stockholm, Sweden. The theoretical approach and methodology of the study is cultural and phenomenological in character, drawing on an ethnological and anthropological understanding of culture as processual and relational, and on a phenomenological understanding of personhood as embodied and intertwined with the surrounding world. The thesis shows that patients’ encounters and attempts to deal with the diagnoses and treatments associated with kidney failure are complex and often misalign them with the normatively charged orientations enacted and recommended by medicine. The complex situation that emerges when they undergo transplantation, for example, stands in stark contrast to the widespread official view of organ transplantation as a self-evidently health-bringing and normalising therapy. Through their repeated and extensive experiences of undergoing haemodialysis and living with the disease, patients eventually become able to create a synthesis between their lived experiences of their own body and their body as a medical object – what in the thesis is called a ‘sick body’ – a synthesis that allows them to reorient themselves in life and experience a sense of direction. This process relies, to a large extent, on the temporal structure that haemodialysis affords life; it is by repeatedly undergoing the treatment that patients become able to create a sick body. Even so, many of them find this temporal structure problematic; they experience it as disruptive of their control and future-orientedness and as causing an existentially difficult-to-handle boredom. The thesis also shows that the political developments and the norms prevalent in the two national contexts studied greatly affect the orientations of the treatment practices and the participants’ lives. In both Riga and Stockholm, ideals of freedom, activity, control, and self-actualisation influence what forms of patienthood and personhood are enacted. The study indicates that persons who fall ill with a serious and chronic disease only gradually become able to understand and actively cope with their differently embodied circumstances of life. This suggests that medical professionals should not too hastily enlist their patients as experts on their own bodies, but rather provide them with the time and support necessary for making repeated attempts at creating and maintaining a life with a sick body. (shrink)

Chronic diseases are major causes of health inequalities. Community nurses can potentially make large contributions to chronic illness prevention and management in Israel but may be obstructed by professional dominance of physicians. However, insufficient research exists about community nursing in Israel, and how it may differ from other countries. This study aims to document chronic disease‐related community nursing roles in Israel, identify changes and trends in community nursing roles that may increase social justice, and understand how (...) the roles and trends in community health nursing in Israel may differ from developments in other countries. In‐depth interviews were performed with 55 Israeli health system professionals, and 692 nurse care‐givers were asked open‐ended questions. Interview answers were analyzed to find themes and trends. The study found that community nurse roles in Israel have expanded, especially for chronic disease control. Commonalities exist with countries such as the United States and the UK, albeit with important differences. However, continued conflicts with physicians exist, which can limit nurses' contributions to reducing health inequalities. Community nurses' importance is growing. Enabling them to overcome professional dominance and improve chronic disease control can help reduce health inequalities in Israel and elsewhere. (shrink)

Background: Chronic Pain (CP) has serious medical and social consequences, and leads to economic burden that threatens the sustainability of healthcare services. Thus, optimized management of pain tools to support CP patients in adjusting to their condition and improving quality of life is timely. Although Acceptance and Commitment Therapy (ACT) is considered an evidence-based psychological approach for CP, evidence for the efficacy of online-delivered ACT for CP is still scarce. At the same time, studies suggest that self-compassion mediates (...) the change in disability and psychopathological symptoms in ACT interventions for CP, although self-compassion is not a specific target in ACT. Thus, an explicit focus on self-compassion might increase the efficacy of ACT interventions for CP, although this hypothesis has not been tested. This study aims to develop an eHealth ACT and compassion-based self-management intervention for CP, the iACTwithPain, and to compare its efficacy in improving health outcomes to a similar ACT-only intervention and a waiting list group. Methods: The eHealth platform that will host the interventions will be developed using a flat design identity and will be interactive. The iACTwithPain intervention will comprise 8 weekly self-management sessions, and will be developed taking into consideration the psychological flexibility model applied to CP, with the addition of explicit compassion-based components. To analyse whether the iACTwithPain intervention will present superiority in improving CP’s impact and related health markers over the two other conditions, this study will follow a RCT design with three arms. CP patients will be recruited through direct contact with patient associations and healthcare services and a national press release in Portugal. Outcome measurement will be conducted at baseline, post-intervention and at 3- and 6-months follow-ups. The interventions’ acceptability will also be assessed. Discussion: The iACTwithPain intervention is expected to improve CP patients’ psychosocial functioning, quality of life, and empowerment, by promoting adaptive disease management and regulation of pain-related internal experiences. Results will contribute to a better understanding on the pertinence of adding compassion elements to ACT for CP and to reach an optimized intervention for CP. (shrink)

It is argued that alcoholism, and substance addiction generally, is a disease. It is not of its nature chronic or progressive, although it is in serious cases. It is better viewed as a psychological disease than a neurological one. It is argued that each time an alcoholic takes a drink, this is the result of choice; however, in cases of serious affliction, such choices are compulsive and may be called 'involuntary' in that they are made (...) against the subject's will, motivated by an overwhelmingly powerful desire that he wishes he did not have and not to act on. Alternative accounts in terms social learning theory and behavioral economics are critiqued. The conception of alcoholism as a tripartite disease composed of a 'physical allergy,' a mental obsession, and a 'spiritual malady' is defended from a contemporary scientific point of view. (shrink)

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, (...) despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process. (shrink)

Globally, chronic disease and conditions such as diabetes, cardiovascular disease, depression and cancer are the leading causes of morbidity and mortality. Why, then, are public health efforts and programs aimed at preventing chronic disease so difficult to implement and maintain? Also, why is primary care—the key medical specialty for helping persons with chronic disease manage their illnesses—in decline? Public health suffers from its often being socially controversial, personally intrusive, irritating to many powerful corporate (...) interests, and structurally designed to be largely invisible and, as a result, taken for granted. Primary care struggles from low reimbursements, relative to specialists, excessive paperwork and time demands that are unattractive to medical students. Our paper concludes with a discussion of why the need for more aggressive public health and redesigned primary care is great, will grow substantially in the near future, and yet will continue to struggle with funding and public popularity. (shrink)

Chronic kidney failure is a serious somatic disease. Addressing the issue of living with a chronic disease means fully considering the patients’ entourage, their families, and those close to them, especially their children and spouses.Objectives: The present paper focuses on the couple’s psychological experience when one of them suffers from a chronic disease, in this instance kidney disease. In particular, how is the spouse affected by the treatment provided? The aim is not (...) only to see how care for sick people can be improved, but also, more specifically, how relatives and especially partners can receive attention.Methodology: A qualitative approach is not only adopted, being based on the psychotherapeutic follow-up of the partners of patients with chronic kidney disease, but also of the patients themselves, addressing the matter of their life as a couple. Three couples were considered, and two case studies are presented here. The issues that cut across these different situations are examined.Results and Discussion: Some couples show considerable resourcefulness. However, over the years, that capacity for adaptation and inventiveness can also be interrupted by the periods of greater suffering and even despair, especially when the somatic pathology becomes chronic. Many spouses talk about how living with a sick partner weighs down on them, causing severe fatigue. Some aspects of the illness can also become traumatic. The disease regularly disrupts the daily life of the couple and the family. This leads to a reworking of family relations. Each couple has its own history with the condition. As it emerges, it can disrupt the bonds of filiation, especially when the illness is hereditary. Making psychological care more accessible to the partners involved constitutes a major challenge for our hospital care systems. (shrink)

Chronic childhood disease brings psychological challenges for families and carers as well as the children. Roger Bradford explores how they cope with these challenges, the psychological and social factors that influence outcomes and the ways in which the delivery of services can be improved to promote adjustment. Drawing on concepts from health psychology and family therapy, the author proposes a multi-level model of care which takes into account the child, the family and the wider care system and how (...) they interrelate and influence each other. (shrink)

According to the Institute of Medicine, chronic pain affects at least 116 million adults in the United States, which is more than the total affected by heart disease, cancer, and diabetes combined. Pain costs the nation up to $635 billion each year in medical treatment and lost productivity. It has been conceptualized as a public health problem due to its prevalence, seriousness, disparities, vulnerable populations, the utility of population health strategies, and the importance of prevention at both the (...) population and individual levels. For many patients, treatment of pain is inadequate due to uncertain diagnoses, societal stigma, the lack of effective treatments, and inadequate patient and clinician knowledge about the best ways to manage pain. This article explores the inadequate treatment of pain in the U.S. and the subsequent rise of prescription painkiller abuse, misuse, and overdoses. This is followed by a review of the actions taken by states to regulate the prescribing of controlled substances. (shrink)

Something important is happening in applied, interdisciplinary research, particularly in the field of applied health research. The vast array of papers in this edition are evidence of a broad change in thinking across an impressive range of practice and academic areas. The problems of complexity, the rise of chronic conditions, over-diagnosis, co- and multimorbidity are serious and challenging, but we are rising to that challenge. Key conceptions regarding science, evidence, disease, clinical judgement, health and social care, are (...) being revised and their relationships reconsidered: boundaries are indeed being redrawn; reasoning is being made 'fit for practice'. Ideas like 'person-centred care' are no longer phrases with potential to be helpful in some yet-to-be-clarified way: theorists and practitioners are working in collaboration to give them substantive import and application. (shrink)

This paper starts by establishing a prima facie case that disadvantaged groups or individuals are more likely to get a chronic disease and are in a disadvantaged position to adhere to chronic treatment despite access through Universal Health Coverage. However, the main aim of this paper is to explore the normative implications of this claim by examining two different but intertwined argumentative lines that might contribute to a better understanding of the ethical challenges faced by chronic (...) disease health policy. The paper develops the argument that certain disadvantages which may predispose to illness might overlap with disadvantages that may hinder self-management, potentially becoming disadvantageous in handling chronic disease. If so, chronic diseases may be seen as disadvantages in themselves, describing a reproduction of disadvantage among the chronically ill and a vicious circle of disadvantage that could both predict and shed light on the catastrophic health outcomes among disadvantaged groups—or individuals—dealing with chronic disease. (shrink)

Background: Biological products are widely used in the treatment of burns, chronic wounds, and other forms of acute injury. However, the religious and ethical issues, including consent, arising from their use have never been addressed in the medical literature.Aims: This study was aimed to ascertain the views of religious leaders about the acceptability of biological products and to evaluate awareness among healthcare professionals about their constituents.Methods: The religious groups that make up about 75% of the United Kingdom population were (...) identified and a questionnaire on 11 biological products was sent to its leaders. Another questionnaire concerning 17 products was sent to 100 healthcare professionals working in seven specialist units in the UK.Results: All religious leaders replied, some after consultation with international bodies. Among them, 77% said that patients should be informed of the constituents of the biological products and consent obtained. Some leaders expressed concerns about particular products including the transmission of viral and prion diseases, cruelty to animals, and material derived from neonates. None of the healthcare professionals surveyed knew the constituents of all the products correctly.Conclusion: Ignoring religious sensitivities and neglecting consent in the usage of biological products could have very serious implications, including litigation. Hospitals and manufacturers should take immediate measures to enlighten healthcare professionals of the constituents of these products so that they can obtain informed consent from patients. (shrink)

Chronic diseases are recognized as a leadingcause of mortality, morbidity, health careutilization and cost. A constant tailoring ofcare to the actual needs of individualpatients, complexity and long duration are thedistinguishing features of chronic diseasemanagement.

Applying a necessary condition communication theory formalism roughly similar to that of Dretske, but focused entirely on the statistical properties of long sequences of signals emitted by the interacting cognitive modules of human biology, we explore the regularities apparent in comorbid psychiatric and chronic physical disorders using an extension of recent perspectives on autoimmune disease. We find that structured psychosocial stress can literally write a distorted image of itself onto child development, resulting in a life course trajectory to (...) characteristic forms of comorbid mind/body dysfunction affecting both dominant and subordinate populations within a pathogenic social hierarchy. (shrink)

This article describes compassion as perceived within the relationship between nurses and older persons with a chronic disease. The aim of the study is to understand the benefit of compassion for nursing practice within the context of long-term care. The design of the study involves a qualitative analysis of in-depth interviews with nurses and patients in three different care-settings. Results show the nature of compassion in seven dimensions: attentiveness, listening, confronting, involvement, helping, presence and understanding. Analysis of the (...) data also shows in what way opinions of participants relate to issues raised in a previous literature study, for example the difference between pity and compassion. The conclusion states that compassion is a valuable process which motivates patients as well as nurses to cooperate in achieving relevant outcomes of care. The discussion involves some methodological issues. For one thing, further confirmation of the dimensions found is recommended. (shrink)

In this paper I will briefly discuss flourishing and freedom, relating them to health and disease; discuss the tensions between flourishing and freedom; and exemplify how those discussions are relevant to chronic disease suffering. The concept of freedom has significant connections with the concepts of health, disability and disease. Understanding disease and disability in terms of the loss of aspects of freedom may help our understanding of the suffering that arises from chronic disease. (...) On the other hand, flourishing may require a degree of adversity. Therefore disability and disease may be conducive to flourishing. Flourishing may be understood as subordinated to freedom, as a path to freedom, or as transcending freedom. It is suggested that freedom and flourishing are expressed as mutually enhancing cycles, actualized according to the personal circumstances that will ground their expression. In a distant horizon of innocent spontaneous self-expression, flourishing and freedom may become coincident. Regarding chronic disease as a constraint on ‘species-typical’ abilities to fulfill one’s significant life interests, as well as an unwanted intrusion into the patient’s life, presents chronic disease suffering as a loss of both positive and negative freedom. The conceptual relation between flourishing and freedom will thus organise the possibilities the sufferer sees as open to their self. (shrink)

Chronic diseases represent the major illness burden of developed nations. A chronic disease databank system consists of parallel longitudinal data sets from diverse locations describing the courses of thousands of patients with chronic illness over many years. Illustrated by ARAMIS (The American Rheumatism Association Medical Information System), such data resources facilitate analysis of long term health outcomes and the factors associated with particular outcomes. A model for clinical investigation of contemporary disease is presented, based on (...) the overwhelming prevalence of chronic illness, the variability, complexity, and uniqueness of the individual patient course, the difficulties of traditional univariate reductionist approaches, and the time span required for study. In this model, data are systematically accrued and continually analyzed, and the data collected are gradually modified based upon evolving anticipation of future needs. The strategies underlying the development of ARAMIS are described, investigational results summarized, and future directions outlined. Keywords: ARAMIS, Chronic Disease Databanks, Prognosis, Health Outcomes CiteULike Connotea Del.icio.us What's this? (shrink)

The new Coronavirus (COVID-19) has been declared a global pandemic by the World Health Organization (WHO). The sudden outbreak of this new virus and the measure of lockdown adopted to contain the epidemic have profoundly changed the lifestyles of the Italian population, with an impact on people’s quality of life and on their social relationships. In particular, due to forced and prolonged cohabitation, couples may be subject to specific stressors during the epidemic. In addition, living with a chronic health (...) condition may add specific challenges to the ones posed by the epidemic itself. The present cross-sectional study aimed to provide a picture of the challenges as well as the resources for both individual and relational well-being of Italian individuals in a couple relationship (N= 1921), with a specific attention to the comparison between individuals living with and without a chronic disease. Results showed that people with a chronic disease had lower psychological well-being and more fears and worries about the COVID-19. People with a chronic disease perceived fewer resources than healthy people. Moreover, the challenges are shown to be associated with less psychological well-being and high pessimism about the future. Instead individual, relational, and social resources play a protective role during the pandemic for both healthy and chronically ill people. (shrink)

Robert Truog describes the controversial randomized controlled trials (RCTs) of extracorporeal membrane oxygenation (ECMO) therapy in newborns. Because early results with ECMO indicated that it might be a great advance, saving many lives, Truog argues that ECMO should not have been tested using RCTs, but that a long-term, large-scale observational study of actual clinical practice should have been conducted instead. Central to Truog’s argument, however, is the idea that ECMO is an unusual case. Thus, it is an open question whether (...) Truog’s conclusions can be extended to other areas of medical research. In this paper, I look at epistemological and ethical issues arising in the care of patients with chronic diseases, using ECMO as a starting point. Both the similarities and the dissimilarities of these two cases highlight important issues in biomedical research and support a conclusion similar to Truog’s. Observational studies of clinical practice provide the best evidence to inform the treatment of patients with chronic disease. (shrink)

Chronically ill conditions are particularly difficult to manage because of their impact both on the social and on the corporal sphere to such an extent as to involve a series of problems that negatively alter the quality of life of affected patients. Chronicity has also a considerable ef-fect on social capital. In the current literature, it is known that social capital may contribute to a range of advantages to people health. Chronic Venous Disease (CVD) includes several pathologi-cal alterations (...) of the venous system of the lower limbs that cause a wide range of symptoms and signs. The aim of this study is to explore, with a qualitative approach, the dynamics of social cap-ital within people's experience of CVD and describe the roles of family and friends and the health care system. The method used is based on face-to-face semistructured interviews was performed, following the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Six-teen patients were included: 11 women and 5 men. The results obtained are completely in line with the current literature, which shows a certain difficulty in terms of daily activities, pain management; work-related difficulties; non-coverage of healthcare costs for medications and drugs prescribed. In the context of social capital, the bonding social capital of the patients inter-viewed was more positively perceived in the role of CVD management than by the patients' fami-lies. Another interesting result concerns the total absence of knowledge of patient associations with CVD. Thus, alongside the biographical destruction that CVD entails, there is evidence of the scarce relevance and presence of health policies capable of improving the quality of life of these people not only from a social and medical point of view but also from an economic point of view. (shrink)

This paper uses the survival strategies of food shelf clients to explore how food access, chronic disease, and spatial isolation shape the lives of low- and no- income urban citizens. The abundant availability of unhealthy food intersects with the presence of long-term health conditions to create a marginalized urban space where low quality commodity food is available, but exacerbates existing health conditions, is difficult to access, and does little to create food security. To survive, clients have normalized a (...) sustenance strategy of going to multiple food serving sites, carrying food long-distances and using SNAP benefits to make ends meet. However, this nourishment strategy is time-consuming and unsafe, demanding that people put themselves in precarious positions and push their bodies farther physically than is healthy. These food procurement strategies exacerbate their marginalization. Qualitative data from food shelf users is used to develop a theory of ambient struggling wherein the struggle for food access is unhealthy and time-consuming, making it difficult to improve their standard of living. (shrink)

The world is experiencing a cataclysmically increasing burden from chronic illnesses. Chronic diseases are on the advance worldwide and treatment strategies to counter this development are dominated by symptom control and polypharmacy. Thus, chronic conditions are often considered irreversible, implying a slow progression of disease that can only be hampered but not stopped. The current plant-based movement is attempting to alter this way of thinking. Applying a nutrition-first approach, the ultimate goal is either disease remission (...) or reversal. Hereby, ethical questions arise as to whether physicians’ current understanding of chronic illness is outdated and morally reprehensible. In this case, physicians may need to recommend plant-based diets to every patient suffering from chronic conditions, while determining what other socioecological factors and environmental aspects play a role in the chronic disease process. This article provides insights to aspects of diet and chronic illness and discusses how the plant-based movement could redefine current understanding of chronic disease. The ethical justifications for recommending of a plant-based diet are analyzed. The article concludes that not advocating for plant-based nutrition is unethical and harms the planet and patients alike. (shrink)

Academic scholarship has steadily reported unfavourable clinical findings on the sport of boxing, and national medical bodies have issued calls for restrictions on the sport. Yet, the positions taken on boxing by medical bodies have been subject to serious discussions. Beyond the medical and legal writings, there is also literature referring to the social and cultural features of boxing as ethically significant. However, what is missing in the bioethical literature is an understanding of the boxers themselves. This is apart (...) from their brain injuries, the debates about the degenerative brain disease known as chronic traumatic encephalopathy (CTE), and related issues about the disease. This article argues that the lives of boxers, their relationships, their careers, and their futures, also requires its own research, particularly in telling stories about their lives, and those lives and futures which boxing affects. The article uses two approaches. First, to imagine a more enduring “whole of life viewpoint” by using an extended future timeframe. Second, to consider perspectives of a person’s significant others. After reviewing the boxing literature, the article discusses social settings and then explores the hidden social relationships in life after boxing. With these longer time and close relationship viewpoints, three important themes emerge: family and kinship; age, stage and career; and the effects of boxing fatalities. These analyses are used in conjunction with relevant clinical findings. which complement the telling of stories to improve medical information, and engages professional and public empathy for people’s experience of illness and difficulties in coping. (shrink)

What kind of a thing are chronic diseases? Are they objects, bundles of signs and symptoms, properties, processes, or fictions? Rather than using concept analysis—the standard approach to disease in the philosophy of medicine—to answer this metaphysical question, I use a bottom-up, inductive approach. I argue that chronic diseases are bodily states or properties—often dispositional, but sometimes categorical. I also investigate the nature of related pathological entities: pathogenesis, etiology, and signs and symptoms. Finally, I defend my view (...) against alternate accounts of the nature of disease. (shrink)

ABSTRACT Patient self‐management (SM) of chronic disease is an evolving movement, with some forms documented as yielding important outcomes. Potential benefits from proper preparation and maintenance of patient SM skills include quality care tailored to the patient's preferences and life goals, and increase in skills in problem solving, confidence and success, generalizable to other parts of the patient's life. Four central ethical issues can be identified: 1) insufficient patient/family access to preparation that will optimize their competence to SM (...) without harm to themselves, 2) lack of acknowledgement that an ethos of patient empowerment can mask transfer of responsibility beyond patient/family competency to handle that responsibility, 3) prevailing assumptions that preparation for SM cannot result in harm and that its main purpose is to deliver physician instructions, and 4) lack of standards for patient selection, which has the potential to exclude individuals who could benefit from learning to SM. Technology assessment offers one framework through which to examine available data about efficacy of patient SM and to answer the central question of what conditions must be put in place to optimize the benefits of SM while assuring that potential harms are controlled. (shrink)

In the inter-war period physicians elaborated numerous ‘biotherapies’ grounded in the complex interactions between physiology, bacteriology and immunology. The elaboration of these non-specific biological treatments was stimulated by the theory of generalized anaphylaxis that linked the violent reaction to a foreign protein to a broad array of chronic diseases, from asthma and urticaria to rheumatism or chronic colitis. Such diseases were perceived as the result of an ‘abnormal reactivity’ to a sensitisation of tissues and organs by bacteria and (...) by foreign proteins, a view that provided an effective bridge between new concepts derived from bacteriology and immunology and the long-standing pathological tradition. Accordingly, physicians attempted to treat these conditions through specific desensitisation and non-specific biological therapies: peptone treatment, protein therapy, haemotherapy, ‘antivirus’ or ‘opotherapy’. Therapies that attempted to neutralise the harmful effects of chronic infections through ‘desensitisation’ were not seen as marginal medical practices, but were promoted by leading advocates of the ‘Pasteurian sciences’, such as Richet, Widal, Vallery-Radot, Wright and Fleming. They also led to development of new products by the pharmaceutical industry. (shrink)

John Davis (_New Methuselahs_: _The Ethics of Life_ _Extension_, The MIT Press, Cambridge, 2018) advances a novel ethical analysis of longevity science that employs a three-fold methodology of examining the impact of life extension technologies on three distinct groups: the “Haves”, the “Have-nots” and the “Will-nots”. In this essay, I critically examine the egalitarian analysis Davis deploys with respect to its ability to help us theorize about the moral significance of an applied gerontological intervention. Rather than focusing on futuristic scenarios (...) of radical life extension, I offer a rival egalitarian analysis that takes seriously (1) the health vulnerabilities of today’s aging populations, (2) the health inequalities of the “aging status quo” and, (3) the prospects for the fair diffusion of an aging intervention over the not-so-distant future. Despite my reservations about Davis’s focus on “life-extension” vs. increasing the human “healthspan”, I agree with his central conclusion that an aging intervention would be, on balance, a good thing and that we should fund such research aggressively. But, I make an even stronger case and conjecture that an intervention that slows down the rate of molecular and cellular decline from the inborn aging process will likely be one of the most important public health advancements of the twenty-first century. This is so because aging is the most prevalent risk factor for chronic disease, frailty and disability, and it is estimated that there will be over 2 billion persons age > 60 by the year 2050. (shrink)

Living things are often plastic during their early development and are moulded by the environment. Many human fetuses have to adapt to a limited supply of nutrients, and in doing so they permanently change their physiology and metabolism. These programmed changes may be the origins of a number of diseases in later life, including coronary heart disease, stroke, diabetes and hypertension.

Attention has become increasingly focused in recent years on the role agri-food system transformations have played in driving the global diet-related chronic disease burden. Identifying the role played by the food-consuming industries (predominantly large manufacturers, processors, distributors, and retailers) in particular, and identifying possibilities to facilitate healthier diets through intervening in these industries, have been identified as a research priority. This paper explores the potential for one promising analytic framework—the nutrition-oriented value chain approach—to contribute to this area, drawing (...) on recent insights from the global value chain (GVC) literature to develop an institutionally-enriched approach. The research focused on a canned deciduous fruit value chain linking growers, processors, and retailers in South Africa and Australia. Findings reveal the multiple drivers which have converged to shape this value chain over time, and the key actors which are influencing product availability, composition, price, and promotion within this sector. With its emphasis on identifying implications for end-consumption, rather than economic outcomes within the chain, nutrition-oriented value chain research represents a significant shift in focus for the GVC framework. Therefore, an immediate opportunity for further research is to extend the analytic framework to primary research on end-consumption behaviours. (shrink)

The extracellular‐signal regulated kinases 1/2 (ERK or ERKs) are involved in the regulation of important neuronal functions, including neuronal plasticity in normal and pathological conditions. We present findings that support the notion that the kinetics and localization of ERK are intrinsically linked, in that the duration of ERK activation dictates its subcellular compartmentalization and/or trafficking. The latter, in turn, dictates whether ERK‐expressing cells would enter a program of cell death, survival or differentiation. We summarize experimental data showing that chronic (...) activation of ERK plays a role in the mechanisms that trigger neurodegeneration. We also discuss how MKPs, members of the subclass of dual specificity phosphatases, might be the link between ERK kinetics and its subcellular localization. BioEssays 25:1085–1095, 2003. © 2003 Wiley Periodicals, Inc. (shrink)

Life can be non-ideal in many ways. One of the central ways is in its necessarily embodied, and hence vulnerable, nature. This vulnerability includes our susceptibility to injury and disease, other types of bodily failure, and death. In this chapter, we will describe the moral and epistemic mistreatment common to the experiences of illnesses. We use the term ‘illness’ here to denote serious and life-changing irreversible conditions, which may be chronic or acute. What we say may be (...) applicable, at least in part, to mental illness as well, but there are important differences. (shrink)

Non-communicable (chronic) and communicable (infectious) diseases constitute the leading causes of death worldwide. They appear to impact populations in developed and developing nations differently with changing trends in the landscape of human conditions. Greater understanding of changing disease burdens should influence the planning of health programmes, the implementation of related interventions, and policymaking efforts on a national and global scale. However, the knowledge of disease burdens does not reflect how states and global health organizations prioritize their efforts (...) in addressing them. This work aims to address the discrepancy in public health priority setting by improving our understanding of how the two disease categories impact the human condition. It reviews two case studies, COVID-19 and type 2 diabetes, as representative cases of an infectious and a chronic disease, respectively, to answer the following question. How does biopolitics, as the governance of human bodies, at the nexus of infectious and chronic disease, impact national and global public health priorities? This work contextualizes and reframes the relationship towards disease categories by focusing on three primary themes: risk, current public health interventions, and funding priorities for each case study analysed. It argues that the politics over life at the nexus of chronic and infectious diseases, best conceived as future-oriented economic optimization, directs the efforts of prioritization in healthcare based on risk and responsibility-based relationship between multiple stakeholders. (shrink)

Ageing populations and rising rates of chronic disease globally have shifted key elements of disease management to ideas of integrated care and self‐management. The associated policies and programmes often focus on intervention and support beyond the sites of the hospital and clinic. These shifts have significantly impacted the delivery and practice of nursing for both nurses and the clients with whom they work. This article argues that Foucault's comments on space, place and heterotopia (1986) are useful in (...) exploring these changes from a philosophical perspective, to draw out the complexity of these programmes and add texture to discussions on the ways these shifts to localisation and the dominant discourses of self‐management and responsibility have reconfigured nursing practices. The theoretical discussion is augmented with illustrations from an Australian integrated health care programme. (shrink)

The concept of professional autonomy has figured prominently in literature that addresses nursing's project of professionalization. Nursing's capacity to determine the nature and scope of its practice is related in important ways to the location of practice. Within highly structured environments such as acute‐care hospitals, nurses' professional autonomy has frequently been contested yet is often implicated by nursing's elite as a necessary condition in the construction of quality work environments. Professional concerns and management practices related to retaining experienced nurses to (...) support sustainability in healthcare delivery systems' impact on the ability of nurses to practice autonomously. Our paper focuses on the emerging field of practice of chronic disease management. We describe the complex relationships negotiated by a nurse in a theoretically autonomous practice setting as she seeks to fulfil both the requirements of a research protocol designed by physician experts representing the specialty of renal medicine, and her professional obligations to respond to the expressed needs of patients with early‐stage renal disease. We utilize a case study approach to explore particular contemporary concerns that nurses in practice confront as they attempt to accomplish professional relationships with patients central to achieving prescribed medical outcomes where nursing practice, as an element of the achievement of those outcomes, is constituted as absent or unacknowledged by the medical researchers leading the project. Implications for nursing's discourses on the professional project of autonomy will be discussed. (shrink)

While freedom of movement has been one of the most highly respected human right across the EU, there are various aspects which come into play which still need to be resolved for this to be achieved in practice. One of these key issues is cross border health care. Indeed, there is an increasing awareness of standardisation of health service provision and cross border collaboration in the EU. However, certain groups particularly children may be at risk of suboptimal treatment as a (...) result. We present the case of a child patient which highlights the complexity of this matter spanning family law, health law, social security law as well as ethical issues. EU legislation needs to ensure that children patients have access to high quality care across the EU borders. (shrink)

The problem of inadequate pain management for both terminally ill patients and patients with chronic pain has recently been documented by a number of authors and studies. A 1997 report by the Institute of Medicine, for example, states that “a significant proportion of dying patients and patients with advanced disease experience serious pain, despite the availability of effective pharmacological and other options for relieving most pain.” There are particularly impressive data that pain associated with cancer is not (...) adequately treated.The problem has been attributed to inadequate education of physicians on approaches to pain management and an often misguided belief that prolonged therapy with certain pain medication will lead to addiction; legal obstacles, such as physicians’ fear of criminal prosecution and other disciplinary actions by state licensing boards for overprescribing narcotics; and inadequate insurance coverage as a result of narrow eligibility criteria for hospice care for Medicare beneficiaries, and inadequate reimbursement more generally for pain management and palliative care. (shrink)