In the domain of medical science, factual evidence is usually considered as the criterion on which to base decisions and construct hypotheses. Evidence-based medicine is the translation of this approach into the field of patient care, and it means providing only the type of care that is based on evidence that proves its effectiveness and appropriateness. However, while the literature has focused on the types and force of evidence used to establish the recommendation and treatment guidelines, the problem (...) of how evidence is used in doctor–patient interactions to motivate, or refuse, treatment or habit change has been almost completely neglected. In this specific context, characterized by the epistemic unbalance between the interlocutors and a specific conversational goal, the scientific categories of evidence are often irrelevant. The goal of this paper is to address this challenge by analyzing the role evidence plays in doctor–patient interactions in diabetes care. After introducing an analytical distinction between the epistemic and the pragmatic aspect of evidence, we will propose a classification of the types and functions of evidence in chronic care communication, and illustrate its possible uses through its application to our corpus of diabetes-care consultations. From our qualitative analyses, it is possible to observe how in this communicative context a crucial role is played by the conflicts of evidence, in which providers correct patients’ uses of evidence leading them to using less defeasible levels of evidence. (shrink)

The study of complexity in chronic care is an emergent discipline that has not yet developed a consistent theoretical framework. Thinking in the field of complexity encompasses complexity science and complexity theories, which represent a convergence of different types of ideas and theories that focus on the interactions of individual parts that make up a complex system. In this context, an important distinction is to be made between "complex" and "complicated." If a system—despite the fact that it may (...) consist of a huge number of components— can be given a complete description in terms of its individual constituents, such a system is merely complicated. An example could be computers. In a complex system, on the .. (shrink)

Metaphors can be used as crucial tools for reaching shared understanding, especially where an epistemic imbalance of knowledge is at stake. However, metaphors can also represent a risk in intercultural or cross-cultural interactions, namely in situations characterised by little or deficient common ground between interlocutors. In such cases, the use of metaphors can lead to misunderstandings and cause communicative breakdowns. The conditions defining when metaphors promote, and hinder understanding have not been analyzed in detail, especially in intracultural contexts. This study (...) proposes an analysis of metaphors identified within an Italian corpus of diabetes care interviews. Through a coding scheme capturing the types and the probative weights of the linguistic evidence that can be used to detect misunderstandings, the communicative effectiveness of metaphors is indirectly assessed. The quantitative and qualitative analyses show a positive correlation between metaphor use and problematic understanding. A more detailed scrutiny of the interlocutors’ roles and topics of the metaphors points out that most of the problematic metaphors are used by patients, while most of the problematic ones used by providers concern non-clinical matters. These results can be explained as resulting from incorrect presumptions of common ground between the interlocutors. (shrink)

Pragmatic presupposition is analyzed in this paper as grounded on an implicit reasoning process based on a set of presumptions, which can define cultural differences. The basic condition for making a presupposition can be represented as a reasoning criterion, namely reasonableness. Presuppositions, on this view, need to be reasonable, namely as the conclusion of an underlying presumptive reasoning that does not or may not contain contradictions with other presumptions, including the ordering of the hierarchy of presumptions. Presumptions are in turn (...) analyzed considering their nature and their hierarchy, namely their object and their possible contextual backing, which eliminates some of their possible defaults. This analysis of presupposition brings to light the relationship between communicative infelicities or misunderstandings deriving from presuppositional failures and the underlying system of presumptions and presumptive reasoning. This approach can be applied to the investigation of communicative problems within the medical context, and more precisely the communication in diabetes cases. (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)

Chronic diseases are the main disease burden worldwide, leading to premature deaths and poor individual and population health outcomes. Although modern medicine has made significant progress in developing effective treatments, only around 50% of people follow long-term treatment recommendations in high-income countries and presumably even less in low-income and middle-income countries.1 Health outcomes for chronic diseases follow a social gradient across socioeconomic groups, suggesting that the 50% adherence rate distributes unequally across social groups, affecting those who live in (...) disadvantage the most despite universal health coverage.2 Bioethicists have largely ignored inequalities that arise from differences in adherence to long-term treatments and the importance of the ethical dimension of chronicity for clinical practice. As I discuss in detail elsewhere, the concept of ‘chronic disease’ lacks a successful and agreed definition, failing to be structured in a traditional way and allowing for a disjunctive group of diseases to fall under the concept.3 Still, the main element that helps distinguish ‘chronic diseases’ from all other diseases is their long duration, so the noun chronicity can help demarcate and identify the nature of ‘chronic disease’. Drawing on conceptual analysis and phenomenological research on illness that highlight the tension between the cyclical and static elements of chronic disease, I have argued that chronicity has a phenomenological sense beyond its …. (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)

In an earlier edition of CambridgeQuarterly, in the section (CQ Vol 9, No 4), Larry Gottlieb sought advice on ethics committee assembly and policy implementation for a community mental health center. One concern mentioned is that staff members frequently encounter ethical issuesregarding the care of clients whose decisionmaking abilities are impaired by chronic mental illness and/or substance abuse. My response offers a suggestion for policy development and implementation, which may be integrated into guiding staff members of community mental (...) health centers toward a model of care planning that is centered on clients' experiences of their treatments and on relationship-building among clients, community members, and mental health professionals. (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)

Jones, Kate The insights into the physiology of the chronic pain are presented, considering the fact that the physiology of pain and the range of personal factors that influence pain are complex. Even though substantial evidence suggests that strategies could be applied to assist chronic pain patients to endure some of the effects of long-term pain, a pain management strategy that works for one person might not be effective for another.

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)

Nearly $2 trillion is spent annually in the U.S. treating chronic illness — yet accessibility to quality health care services in rural communities for the chronically ill and dying remains problematic. Unique barriers present special challenges to a meaningful discussion of and subsequent strategies for addressing these issues in the context of increasingly scarce resources.

The Institute of Medicine reporting on the quality of health care in America recommends six aims for achieving the health care system we could have. Together with the Institute for Healthcare Improvement Triple Aim initiative, a framework has emerged to challenge providers, educators, and policymakers to remake the health care system according to specific objectives: to provide care that is safe, effective, patient-centered, timely, efficient, and equitable to more people at a price we can afford. Complicating (...) this mission of better prevention and better care at a lower cost is a daunting demographic: January of 2011 marked the month and year that the first of the baby boomers turned 65. The U.S. Census Bureau in May 2010 projected the number of Americans of this age and over to reach 88 million by 2050, more than double the current figure of 40.2 million. Parekh and Barton forecast in stark detail what it will be like to address these burgeoning numbers of older Americans with comorbidities, including the fact that over 20% of the population currently experiences at least two chronic medical conditions. (shrink)

This ethnographic study introduces the term “distressed work” to describe the emergence of chronic frictions between moral imperatives for health care workers to keep working and the dramatic increase in distress during the Covid‐19 pandemic. Interviews and observant participation conducted in a hospital intensive care unit during the Covid‐19 pandemic reveal how health care workers connected job duties with extraordinary emotional, physical, and moral burdens. We explore tensions between perceived obligations of health care professionals and (...) the structural contexts of work. Key findings cluster around the moral imperatives of health care work and the distress that work engendered as work spaces, senses of vocation, patient and family interactions, and end‐of‐life care shifted. While the danger of working beyond limits has long been an ordinary feature of health care work, it has now become a chronic crisis. Assessing this problem in terms of distressed work and its structural contexts can better address effective, worker‐informed responses to current health care labor dilemmas. (shrink)

The ethical challenges of caring for the chronically ill are of increasing concern to nurses as they attempt to create humanitarian environments for long-term care. This article suggests two ethical perspectives to guide the agenda of the nursing profession to achieve social change in the care of the chronically ill and aging. First, a reemphasis on the public duties of the professions is recommended which extends beyond serving the interests of the nursing profession to recognizing the need to (...) serve the common good. Second, the limitations of the autonomy paradigm are explored and the foundation for the development of a new moral paradigm is analyzed in terms of its' potential usefulness in addressing ethical problems of chronic illness. Several initiatives that nursing must undertake to facilitate the emergence of this paradigm are proposed. (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 prelims comprise: Introduction Chronic Illness and Disability Acute and Chronic Illness: Health Care's Goals The Population Adaptive Values Personal and Public Perspectives Worthy Lives Conclusion Notes.

Pain management has improved in the past few decades. Opioid analgesics have become the mainstay in the treatment of cancer pain whilst inter-disciplinary pain management programmes are the generally accepted approach to chronic pain of non-malignant origin. Recently some pain specialists have advocated the use of opioids in the long-term management of non-cancer pain. This has raised some fundamental questions about the purpose of pain management. Is it best to opt for maximum pain relief and comfort, or should one (...) emphasise function and activity as higher priorities? Will the use of opioids create more autonomy for pain sufferers or will this add handicaps to lives which are already limited? Until more clinical outcome data are available we advocate caution in the use of opioid analgesia. Such caution can, and does, raise questions about the rights of the patient and the rights of the prescriber in a context where the facts do not point to a clear course of action. (shrink)

The following article is a response to the position paper of the Hastings Center, "Ethical Challenges of Chronic Illness", a product of their three year project on Ethics and Chronic Care. The authors of this paper, three prominent bioethicists, Daniel Callahan, Arthur Caplan, and Bruce Jennings, argue that there should be a different ethic for acute and chronic care. In pressing this distinction they provide philosophical grounds for limiting medical care for the elderly and (...) chronically ill. We give a critical survey of their position and reject it as well as any attempt to characterize the physician-patient relationship as a commercial contract. We emphasize, as central features of good medical practice, a commitment to be the patient's agent and a determination to acquire and be guided by knowledge. These commitments may sometimes conflict with efforts to have the physician serve as an instrument of social and economic policies limiting medical care. Keywords: acute, agent, autonomy, chronic, knowledge, obligations, rights CiteULike Connotea Del.icio.us What's this? (shrink)

The aim of this study was to identify and analyse ethical decision making in the home care of persons with long-term mental illness. A focus was placed on how health care workers interpret and deal with the principle of autonomy in actual situations. Three focus groups involving mental health nurses who were experienced in the home care of persons with chronic mental illness were conducted in order to stimulate an interactive dialogue on this topic. A constant (...) comparative analysis of the transcribed audiotaped sessions identified a central theme that concerned the moral symbolic meaning of ‘home’. This reflected the health care workers’ conflict between their professional role and their moral role, which they perceived as unclear. (shrink)

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

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 (...) 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)

Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we (...) address this gap by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (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)