Digital technologies induce organised immaturity by generating toxic sociotechnical conditions that lead us to delegate autonomous, individual, and responsible thoughts and actions to external technological systems. Aiming to move beyond a diagnostic critical reading of the toxicity of digitalisation, we bring Bernard Stiegler’s pharmacological analysis of technology into dialogue with the ethics of care to speculatively explore how the socially engaged arts—a type of artistic practice emphasising audience co-production and processual collective responses to social challenges—play a care-giving role (...) that helps counter technology-induced organised immaturity. We outline and illustrate two modes by which the socially engaged arts play this role: 1) disorganising immaturity through artivism, most notably anti-surveillance art, that imparts savoir vivre, that is, shared knowledge and meaning to counter the toxic side of technologies while enabling the imagination of alternative worlds in which humans coexist harmoniously with digital technologies, and 2) organising maturity through arts-based hacking that imparts savoir faire, that is, hands-on knowledge for experimental creation and practical enactment of better technological worlds. (shrink)

In this third article on the role of international comparative practices in the formation of national health care systems I discuss a familiar group of systems-builders--medical professional organisations--and so focus on some early comparisons undertaken by organised groups of doctors. So far in this series I have argued that any attempt to make international comparisons--whether in the 19th-century or today--is bound to be based on a 'characteristically national' understanding. Not infrequently such an understanding finds its clearest expression in the (...) very act of undertaking practical tasks like 'comparing'. Dependent on whether comparisons are carried out by individuals privately, collectively by larger groups within the medical profession, or by government agencies the descriptions of 'national characteristics' (of medical organisation, institutional formation, clinical practice, research, public health and education) will differ in emphasis. -/- The examination of collective professional attempts at international comparison can enhance our understanding of the cultural distinctions that were incorporated by emerging national medical professions. This process can show which aspects of foreign medical systems were deemed pertinent, and also reveals methodology. What did such collective endeavours add to the more biographically coloured comparisons undertaken by the individual mid-century authors I discussed in part II of this series? (shrink)

Guidelines provided by the Director of Public Prosecutions suggest that anyone assisting another to commit suicide in England and Wales, or elsewhere, will not be prosecuted provided there are no self-seeking motives and no active encouragement. This reflects the position in Switzerland. There, however, no difference is made between assistance and inducement. In addition, the Swiss approach makes it possible to establish organisations to assist the suicides of both their citizens and foreign visitors. It should not be assumed that this (...) approach is without controversy in Switzerland. Proposals for reform continue to be debated there, not least because of the concern about some of the actual practices of certain end-of-life organisations. It is likely that a few English citizens will continue to avail themselves of these services in Switzerland if they cannot find the help they require here. This paper explores the legitimacy of the current restrictive position adopted towards assisted suicide in England. It argues that the provisions within the guidelines prohibiting organisations that assist suicides, leaves some without the help they need. While legislative decriminalisation of assisted suicide and the establishment of state-sponsored suicide centres would represent the most permissive regime, this paper proposes that this would be a step too far. The preference here is for decriminalisation but adopting a ‘middle way’ between the two extremes: the more permissive approach provided by the ‘Swiss model’ is one that could be employed here, albeit within a more robust regulatory regime. (shrink)

BackgroundCervical cancer disproportionately burdens disadvantaged women. Organised cervical screening aims to make cancer prevention available to all women in a population, yet screening uptake and cancer incidence and mortality are strongly correlated with socioeconomic status. Reaching underscreened populations is a stated priority in many screening programs, usually with an emphasis on something like ‘equity’. Equity is a poorly defined and understood concept. We aimed to explain experts’ perspectives on how cervical screening programs might justifiably respond to ‘the underscreened’.MethodsThis paper reports (...) on a grounded theory study of cervical screening experts involved in program organisation. Participants were 23 experts from several countries and a range of backgrounds: gynecology; epidemiology; public health; pathology; general practice; policy making. Data were gathered via semi-structured interview and concepts developed through transcript coding and memo writing.ResultsMost experts expressed an intuitive commitment to reducing systematic differences in screening participation or cancer outcomes. They took three different implicit positions, however, on what made organised programs justifiable with respect to underscreened populations. These were: 1) accepting that population screening is likely to miss certain disenfranchised groups for practical and cultural reasons, and focusing on maximising mainstream reach; 2) identifying and removing barriers to screening; and 3) providing parallel tailored screening services that attended to different cultural needs. Positions tended to fall along country of practice lines.ConclusionsExperts emphasised the provision of opportunity for underscreened populations to take up screening. A focus on opportunity appeared to rely on tacit premises not supported by evidence: that provision of meaningful opportunity leads to increased uptake, and that increased uptake of an initial screening test by disadvantaged populations would decrease cervical cancer incidence and mortality. There was little attention to anything other than the point of testing, or the difficulties disadvantaged women can have in accessing follow up care. The different approaches to ‘improving equity’ taken by participants are differently justified, and differently justifiable, but none attend directly to the broader conditions of disadvantage. (shrink)

Context: Despite much research on informed choice and the individuals’ autonomy in organised medical screening, little is known about the individuals’ decision-making process as expressed in their own words.Objectives: To explore the decision-making process among women invited to a mammography screening programme.Setting: Women living in the counties of Sør- and Nord-Trøndelag, Norway, invited to the first round of the Norwegian Breast Cancer Screening Program in 2003.Methods: Qualitative methods based on eight semistructured focus-group interviews with a total of 69 women aged (...) 50–69 years.Results: The decision to attend mammography screening was not based on the information in the invitation letter and leaflet provided by the NBCSP. They perceived the invitation letter with a prescheduled appointment as if a decision for mammography had already been made. This was experienced as an aid in overcoming the postponements that easily occur in daily lives. The invitation to mammography screening was embraced as an indication of a responsible welfare state, “like a mother taking care.”Conclusion: In a welfare state where governmental institutions are trusted, mass screening for disease is acknowledged by screening participants as a valued expression of paternalism. Trust, gratitude, and convenience were more important factors than information about benefits, harms, and risks when the women made their decisions to attend screening. These elements should be included in the ethical debates on informed choice in preventive medicine. (shrink)

ABSTRACT This paper reports on a multidisciplinary meeting held to discuss ethical issues in medical research in the developing world. Many studies, including clinical trials, are conducted in developing countries with a high burden of disease. Conditions under which this research is conducted vary because of differences in culture, public health, political, legal and social contexts specific to these countries. Research practices, including standards of care for participants, may vary as a result. It is therefore not surprising that ethical (...) issues emerge. This meeting sought to identify and discuss these issues from the perspectives of the many actors in such research, including community representatives, with a view to finding ethical and pragmatic solutions to these issues. Dialogue between these actors was also promoted, with a view to identifying the need to develop such dialogue in future. Drawing from the experiences of the speakers, the colloquium attempted to outline some answers to several key questions characterising the field today. Experiences related to epidemiologic research, vaccine trials, drug trials, diagnostic tests and to some fundamental ethical issues in health research. Speakers were from different countries, disciplines and professions. The meeting provided a forum for consultation and debate between different ethics actors. Both encouraging findings and challenges emerged. (shrink)

The Autism Spectrum Disorder (ASD) represents a set of life-long disorders. In particular, subjects with ASD can display momentary behaviors of acute agitation and aggressiveness called crisis behaviors. These events are problematic for the subject and care providers but little is known about their occurrence, namely, possible relations among intensity, frequency, and duration. A group of ASD subjects (n=33) has been observed for 12 months reporting data on each crisis ( n = 1137 crises). Statistical analysis did not find (...) significant results, while the relation between crisis duration and frequency showed a good fit to a “power law” curve, suggesting the application of Self-Organized Criticality (SOC) model. The SOC is used to describe natural phenomena as earthquakes, bank failures of rivers, mass extinctions, and other systems where a type of “catastrophic events” is necessary to maintain a critical equilibrium. In a sense, subjects at risk of crisis behavior seem to fit the same model as seismic zones at risk of earthquakes. The employment of the same strategies, as those successfully developed for known SOC systems, could lead to important insights for ASD management. Moreover, the SOC model offers possible interpretations of crisis behavior dynamics suggesting that they are unpredictable and, in a sense, necessary. (shrink)

Within a period of one year, two countries have enacted laws that articulate conditions under which euthanasia and physician assisted suicide are permitted. Belgium and the Netherlands thus distinguish themselves from all other countries of the world.In Belgium, palliative care organisations have been pro-actively involved in the debate on the contents of the law, highlighting that if euthanasia can ever be justified, it is necessary to provide good palliative care for all and to include in the euthanasia law (...) what has been called a palliative filter, i.e. a compulsory prior consultation with a specialised palliative care team. In the Netherlands, before the euthanasia law was enacted, there had been a policy of pragmatic tolerance for decades. The enactment itself did not give rise to intense debate. It can be questioned whether the new law would change anything at all since it only officially sanctioned an existing practice. This however does not mean that caregivers in palliative care, together with palliative care organisations, have not participated in the euthanasia debate.In the first part of this article the input of palliative care organisations in the Dutch euthanasia debate is described and explained by situating it in its broader context. First opinions on euthanasia of a variety of palliative care organisations are described. Secondly the Dutch debate on palliative care and euthanasia is analysed and evaluated. In a second part of this article a brief introduction to Belgian palliative care is given. This introduction is followed by an overview of the way organised palliative care has been active in the Belgian euthanasia debate. Attention too is given to the Belgian discussion on palliative sedation, sedation being presented by some as the palliative alternative to euthanasia but seen by others as nothing but euthanasia in disguise. (shrink)

Beginning with a focus on the ethical foundations of caregiving in health and expanding towards problems of ethics and justice implicated in a range of issues, this book develops and expands the notion of care itself and its connection to practice. Organised around the themes of culture as a restraint on caregiving in different social contexts and situations, innovative methods in healthcare, and the way in which culture works to position care as part of a rhetorical approach to (...) dependency, responsibility, and justice, The Ethics of Carepresents case studies examining institutional responses to end-of-life issues, the notion of informed consent, biomedicine, indigenous rights and postcolonialism in care and theoretical approaches to the concept of care. Offering discussions from a variety of disciplinary approaches, including sociology, communication, and social theory, as well as hermeneutics, phenomenology, and deconstruction, this book will appeal to scholars across the social sciences with interests in healthcare, medicine, justice and the question of how we think about care as a notion and social form, and how this is related to practice. (shrink)

Workers often have a complex relationship with the technologies they use in the workoplace, and many influences can affect that relationship. This is well demonstrated in the story of unionized painters who, at the turn of this century, were sufferingfrom occupational lead poisoning because the paints of the day used lead as their primary pigment. At the beginning of the study period, the painters were fairly passive about the disease, having accepted it as a hazard of the job. By the (...) middle of the 1920's, however, the painters' union was fighting aggressively to remove lead from their work environments and to make employers take some responsiblilty for work-related health care needs. No single event or person brought this change about. Instead, it was the coalescence of several influences that convinced the painters that occupational lead poisoning was something they should fight against. (shrink)

In Sweden, palliative care has, over the past decades, been object to policies and guidelines with focus on how to achieve “good palliative care”. The aim of this study has been to analyse how experts make sense of the development and the current state of palliative care. Departing from this aim, focus has been on identifying how personal experiences of ‘the self’ are intertwined with culturally available meta-level concepts and how experts contribute to construct new scripts on (...) palliative care. Twelve qualitative interviews were conducted. Four scripts were identified after analysing the empirical material: 1. script of paths towards working within palliative care; 2. script of desirable and deterrent reference points; 3. script of tensions between improvement and bureaucracy; and 4. script of low status and uncertain definitions. The findings of this study illustrate how experts in complex ways intertwine experiences of ‘the self’ with meta-levels concepts in order to make sense of the field of palliative care. The participants did not endorse one “right way” of “good” deaths. Instead, palliative care was considered to be located in a complex state where the historical development, consisting of both desirable ideals, death denials and lack of guidelines, and more recent developments of strives towards universal concepts, “improvement” and increased bureaucracy altogether played a significant role for how palliative care has developed and is organised and conducted today. (shrink)

This book explores two public sector scandals in the UK, drawing on Max Weber's thought on 'the iron cage' to understand how these cases of patient-neglect in NHS hospitals and failures by police and social workers to address the organised sexual exploitation of young girls occurred. Through examination of the management failures and institutional vulnerabilities, and with attention to the trends of bureaucratisation and rationalisation that characterised both scandals, it reveals the explanatory power of Weber's thought, developing a theoretical model (...) that updates and extends Weber's work in light of the cases discussed. Showing that ordinary people as well as ordinary people, including professionals, are still trapped in the 'iron cage', it will appeal to scholars of sociology and social theory, as well as those providing training and working within the caring and service professions of policing, social work and nursing. (shrink)

Objectives: To examine the experiences of spousal care givers of Alzheimer patients to disclosure of dementia diagnosis and subsequent care.Methods: A random sample of 1943 spousal care givers of people receiving medication for Alzheimer disease was sent a cross-sectional postal survey about their opinions on the disclosure of dementia and follow-up care. A smaller qualitative study included open-ended questions concerning their experiences of the same topics.Results: The response rate for the survey was 77%. Of the respondents, (...) 1214 of 1434 acknowledged themselves as their spouse’s care giver. The mean age of the care givers was 78.2 years, and that of demented spouses, 80.5 years. Of the care givers, 63% were women. The couples had long-lasting marriages. Of the care givers, 93% reported that dementia had been disclosed openly to their spouse; 97% also preferred that physicians openly inform the patients of the dementia diagnosis, although 55% of their spouses with AD had developed depressive symptoms after the disclosure. Of the care givers, 71% felt they had received sufficient information about dementia. However, only 50% estimated that their spouses’ follow-up care had been well organised. The responses in the qualitative study indicated that many care givers felt grief and anxiety. They also expressed feelings of loneliness and uncertainty about how to deal with follow-up care for dementia.Conclusions: Elderly spousal care givers were quite satisfied with the information given them about dementia. However, the support with regard to the follow-up care of care-giving families failed to meet their needs adequately. (shrink)

Background: Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers’ everyday work. Research objective: The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling (...) of these problems. Research design: Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. Findings: We found six categories of ethical problems (with the main focus on problems relating to the patient’s loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. Discussion: The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Conclusion: Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems. (shrink)

Is positive thinking really so healthy that, as Martin Seligman (2000) and Mihaly Csikszentmihalyi passionately thus argued, "we believe that a psychology of positive human functioning will arise, which achieves a scientific understanding and effective interventions to build thriving individuals, families, and communities"? This optimistic view on positive thinking for health can be contrasted with an opposing view by Barbara Ehrenreich (2009), who "extensively critiqued 'positive psychology'" and showed "how obsessive positive thinking impedes productive action, causes delusional assessments of situations, (...) and people are then blamed for not visualising hard enough and thus 'attracting' failure even in situations when 'masses of lives were lost'." (WK 2013; R Byrne 2006) Contrary to these opposing views (and other ones as will be discussed in the book), health care (in relation to mental health and physical health in the context of mind and body) are neither possible (or impossible) nor desirable (or undesirable) to the extent that the respective ideologues (on different sides) would like us to believe. Surely, this questioning of the opposing views on health care does not suggest that the study of health care is worthless, or that those fields (related to health care) like medicine, chiropractic, health system, dentistry, health info tech, nursing, psychiatrics, clinical psychology, occupational therapy, pharmacy, allied health, and so on are unimportant. Needless to say, neither of these extreme views is reasonable. Instead, this book offers an alternative (better) way to understand the future of health care, especially in the dialectic relationships between mental health and physical health in the context of mind and body -- while learning from different approaches in the literature but without favouring any one of them (nor integrating them, since they are not necessarily compatible with each other). More specifically, this book offers a new theory (that is, the interconnected theory of health care) to go beyond the existing approaches in a novel way and is organised in four chapters. (shrink)

This special issue of Health Care Analysis originated in an conference, held in Birmingham in 2014, and organised by the group Think about Health. We introduce the issue by briefly reviewing the understandings of the concept of ‘flourishing’, and introducing the contributory papers, before offering some reflections on the remaining issues that reflection on flourishing poses for health care provision.

In a recent review article, Jeff Popke (2006, p. 510) calls for a ‘more direct engagement with theories of ethics and responsibility’ on the part of human geographers, and for a reinscription of the social as a site of ethics and responsibility. This requires that we also continue to develop ways of thinking through our responsibilities toward unseen others—both unseen neighbours and distant others—and to cultivate a renewed sense of social interconnectedness. Popke suggests that a feminist-inspired ethic of care (...) might be instrumental in developing this expanded, relational and collective vision of the social, which is particularly prescient given the contemporary economic downturn throughout the globe. Thus, as the ‘moral turn’ in geography continues to evolve, this special issue seeks to bring together geographers working within feminist or feminist-inspired frameworks, and with a shared interest in the changing geographies of ethics, responsibility and care. The collection of papers has its origins in conference sessions on Care-full Geographies, organised by the Guest Editors at the Annual Meeting of the Association of American Geographers in 2007. In this editorial we seek to position the papers within broader debates about care, responsibility and ethics that have emerged in geography and the wider social sciences in recent years, and to highlight the key issues that have framed these debates. (shrink)

Background: Decisions of patients, families, and health care providers about medical care at the end of life depend on many factors, including the societal culture. A pan-European study was conducted to determine the frequency and types of end of life practices in European intensive care units , including those in Israel. Several results of the Israeli subsample were different to those of the overall sample.Objective: The objective of this article was to explore these differences and provide a (...) possible explanation based on the impact of culture on end of life decision making.Method: All adult patients admitted consecutively to three Israeli ICUs who died or underwent any limitation of life saving interventions between 1 January 1999 and 30 June 2000 were studied prospectively . These patients were compared with a similar sample taken from the larger study carried out in 37 European ICUs. Patients were followed until discharge, death, or 2 months from the decision to limit therapy. End of life decisions were prospectively organised into one of five mutually exclusive categories: cardiopulmonary resuscitation , brain death, withholding treatment, withdrawing treatment, and active shortening of the dying process . The data also included patient characteristics , specific therapies limited, and the method of SDP.Results: The majority of patients had treatment withheld, none underwent SDP, 62 received CPR , 31 had brain death , and 18 underwent withdrawal of treatment . The primary reason given for limiting treatment was that the patient was unresponsive to therapy . End of life discussions were held with 132 families , the vast majority of which revolved around withholding treatment and the remainder concerned withdrawing treatment .There was a statistically significant association between the type of end of life decision and region—that is, the northern region of Europe, the central region, the southern region, and Israel.Conclusions: Regional culture plays an important part in end of life decision making. Differences relating to end of life decision making exist between regions and these differences can often be attributed to cultural factors. Such cultures not only affect patients and their families but also the health care workers who make and carry out such decisions. (shrink)

The health of a nation tells much about the nature of a social contract between citizen and state. The way that health care is organised, and the degree to which it is equitably accessible, constitutes a manifestation of the effects of moments and events in that country's history. Research around health inequalities often focuses on demonstrating current conditions, with little attention paid to how the conditions of inequality have been achieved and sustained. This article presents a novel approach to (...) inequalities research that focuses on examining powerful historical discourses as legitimising processes that serve to sustain unequal conditions. The use of this Foucauldian historical genealogical approach in a study of the Irish health care system is explored and proposed as a novel approach to the research of health inequities. (shrink)

Multiprofessional teams have become in recent years one of the distinguishing features of services, where professionals with different competences work together. The core of our interest is addressed to the équipe of a palliative care ward; in particular, to that series of working activities that consists of communicative acts, as équipe meetings, for instance. Our research focuses on the analysis of the process by which the development of knowledge in multiprofessional practice is built to establish more information on recurrent (...) patterns in the interaction and connect them to the specific context that these are shaped by. In this sense we will underline how components of knowing are shared among team members in constructing medical prognosis and we will analyse the connection among language processes, cognitive activities and social structures. More specifically, we will study the role of language and the context in the definition of linguistic acts in cognitive activities and in hierarchies involved in decision-making processes by exploring and pointing out how it is organised and structured. In particular through the study of talk-in-interaction where interchange of information is realised, we will emphasise how, in the multiprofessional équipe meeting, the realisation of practices and the knowledge useful to collaborative management of ward working life are established. To reach this aim, we adopted an ethnographic approach connected to the analysis of the situated interaction. (shrink)

Clinical ethics support mechanisms in healthcare are increasing but little is known about the specific developments in elderly care. The aim of this paper is to present a systematic literature review on the characteristics of existing ethics support mechanisms in institutional elderly care. A review was performed in three electronic databases . Sixty papers were included in the review. The ethics support mechanisms are classified in four categories: ‘institutional bodies’ ; ‘frameworks’ ; ‘educational programmes and moral case deliberation’; (...) and ‘written documents and policies’. For each category the goals, methods and ways of organising are described. Ethics support often serves several goals and can be targeted at various levels: case, professional or organisation. Over the past decades a number of changes have taken place in the development of ethics support in elderly care. Considering the goals, ethics support has become more outreaching and proactive, aiming to qualify professionals to integrate ethics in daily care processes. The approaches in clinical ethics support have become more diverse, more focused on everyday ethical issues and better adapted to the concrete learning style of the nursing staff. Ethics support has become less centrally organised and more connected to local contexts and primary process within the organisation. (shrink)

Public lecture series do not always, unfortunately, result in a published volume of interdisciplinary, informed and well argued papers. Medical Ethics and the Future of Health Care has succeeded, however, in doing just this. A public lecture series was organised by the Adelaide Hospital Society, Dublin, Ireland in 1999 to facilitate better public understanding of complex issues in health care confronting citizens and carers. The book assumes correctly that the Republic of Ireland is now indisputably a pluralist society, (...) discomforting to some readers who might look to the book for absolute answers and certainties. They would be disappointed because the essays show rather that it will be public debate and reasoned, imaginative approaches to decision making in health care that will replace the comforts of traditional certainties. Coming from the internationally recognised philosopher of principlism, James Childress, the nurse ethicist, Verena Tschudin and representatives from …. (shrink)

How is a terminally ill patient treated by the surrounding people in the U.S. and Japan? How does a terminally ill patient decide on his or her own treatment? These questions will be examined in a study of intensive medical care, received by a terminally ill Japanese cancer patient in the U.S. and Japan. This casereflects the participant observation by a Japanese anthropologist for about 8 years in the United States and Japan on one patient who was hospitalized in (...) both countries on and off for about eight years. The objective of this study is to illuminate the different concept of personhood between the U.S. and Japan that appeared in different cultural practices of both countries and in the subject’s own decision making process. The significant differences appeared between theU.S. and Japan in the concepts of (1) science, (2) suffering, (3) Power of Attorney and Doisho (Consent Form), and (4) organized care. The interpretation of such differences indicates that seemingly universal practices across countries suggest cultural specific concepts and their management. Therefore, ethical norms appeared differently accordingly to each country. (shrink)

This essay examines paid care labor that typically assists older adult individuals in performing the activities of daily living. I make the case that emotional labor is constitutive of ancillary care and that some emotion-based utterances are communicative actions in the sense intended by Jürgen Habermas. However, communicative action is undermined because of the manner in which ancillary care is organized. I discuss why this is problematic and suggest ways to enhance the goals of ancillary (...) class='Hi'>care by granting communicative action a greater role within caregiving. (shrink)

This article develops an approach to ethical globalization based on a feminist, political ethic of care; this is achieved, in part, through a comparison with, and critique of, Thomas Pogge's World Poverty and Human Rights. In his book, Pogge makes the valid and important argument that the global economic order is currently organized such that developed countries have a huge advantage in terms of power and expertise, and that decisions are reached purely and exclusively through self-interest. Pogge uses (...) an institutional rights framework to argue that direct responsibility for global poverty and inequality lies with the citizens of developed countries, since suffering and death are caused by global economic arrangements designed and imposed by our governments. While this argument is certainly compelling, I have argued that it tells us little about the actual effects of globalization on the real people of the South - including women, children and the elderly. As a result, it can offer little in the way of real alternatives or policy prescriptions. As a moral orientation, a care ethic relies on a relational moral ontology, and leads us to consider different values in terms of human flourishing. Moreover, it pushes us to consider the normative implications of aspects of the global political economy which are usually not 'seen' at all, including the global distribution of care work and the corresponding patterns of gender and racial inequality, the underprovision of care and resources for caring work in both the developed and developing world, and the ways in which unpaid or low-paid caring work helps to sustain a cycle of exploitation and inequality on a global scale. (shrink)

Background: For many years the body of literature known as ‘care ethics’ or ‘ethics of care’ has been discussed as regards its status and nature. There is much confusion and little structured discussion. The paper of Klaver et al. (2014) was written as a discussion article to which we respond. Objectives: We aim to contribute to the ongoing discussion about the status and nature of care ethics. Research design: Responding to ‘Demarcation of the ethics of care (...) as a discipline’ by Klaver et al. (2014) and ‘Three versions of an ethics of care’ by Edwards (2009), we identified shared concerns and formulated criticisms of both texts in order to develop an alternative view. Participants and research context: This paper has been written from the academic context of a master in care ethics an policy. Ethical considerations: We have tried to be fair and respectful to the authors discussed. Findings: Both Klaver et al. (2014) and Edwards (2009) raise important concerns about the question if care ethics can be considered an academic discipline, and to what extend it can be seen as a moral theory. Despite shared concerns, their arguments fail to convince us in all respects. Discussion and conclusion: We propose to conceive care ethics as an interdisciplinary field of inquiry, incorporating a dialectical relation between empirical research and theoretical reflection. Departing from the notion of caring as a practice of contributing to a life-sustaining web, we argue that care ethics can only profit from a loosely organized academic profile that allows for flexibility and critical attitude that brings us close to the good emerging in specific practices. This asks for ways of searching for a common focus and interest that is inherently democratic and dialogical and thus beyond demarcation. (shrink)

Health care work is interprofessional work. Nurses and physicians, members of the professions whose close collaboration is foundational to health care delivery, continue to be educated separately in most academic institutions. Their work also is organized in ways that challenge interprofessional collaboration. Understanding workplace realities faced by nurses and physicians, separately and jointly, is a starting place for exploring how to support ethically sound interprofessional work. In this essay, we look most closely at the work of nurses (...) and physicians who care for seriously ill hospitalized patients, a patient population closely associated with ethical challenges. (shrink)

This article reviews the relationship between managed care and public health. Managed care, with its seemingly infinite structural and organizational variation, dominates the modern American health-care system for the non-elderly U.S. population. Through its emphasis on standarhzed practice norms and performance measurement, coupled with industrial purchasing techniques, prepayment, risk downstreaming, and incentives-based compensation, managed care has the potential to exert considerable influence over the manner in which the health-care system is organized and functions. Given (...) the degree to which the attainment of the basic public health goal of protecting the public against population health threats for which there are known and effective medical interventions depends on the successful interaction between public health policy and the medical care system, the importance of a viable working relationship between public health and managed care is difficult to overstate.The potential for conflict between public health and medical care is nothing new; indeed, delineating the boundaries of public health to shape and influence medical practice has occupied the energies of policymakers and the medical industry for well over a century. (shrink)

The best empirically grounded theory of first-personal phenomenal consciousness is global workspace theory. This, combined with the success of the phenomenal-concept strategy, means that consciousness can be fully reductively explained in terms of globally broadcast representational content. So there are no qualia. As a result, the question of which other creatures besides ourselves are phenomenally conscious is of no importance, and doesn’t admit of a factual answer in most cases. What is real, and what does matter, is a multidimensional similarity (...) space of functionally organized minds. (shrink)

In Britain before 1911, the vast majority of the population provided medical care for themselves and had evolved a variety of schemes that checked the power of organized medicine and encouraged a steady improvement in standards. The evidence is that at the end of the nineteenth century about 5–6 percent of the population relied on the poor law, 10–15 percent on free care from charitable institutions, 75 percent on mutual aid, and the remainder paid fees to private (...) doctors. (shrink)

The rise of managed care initiated a steady decline in solo and small group physician practices and the emergence of new delivery models built around large health care organizations. Health care reform has only accelerated this trend as public and private payors shift to new payment methodologies that reward clinical and financial integration among providers. As a result, patients increasingly receive care from physicians and other health professionals organized into collaborative partnerships with one another and (...) institutional providers, such as hospitals. As described below, this new organizational dynamic profoundly influences the clinical judgment of physicians. No longer can society simply depend on the professionalism of individual physicians to ensure ethical integrity in the health care setting. Rather, ethical integrity in the health care setting also requires a strong foundation of organizational ethics. (shrink)

Mental health research and care in the twenty first century faces a series of conceptual and ethical challenges arising from unprecedented advances in the neurosciences, combined with radical cultural and organisational change. The Oxford Textbook of Philosophy of Psychiatry is aimed at all those responding to these challenges, from professionals in health and social care, managers, lawyers and policy makers; service users, informal carers and others in the voluntary sector; through to philosophers, neuroscientists and clinical researchers. Organised around (...) a series of case studies in five key topic areas - concepts of disorder, the philosophical history of psychopathology, philosophy of science, ethics and philosophical value theory, and philosophy of mind - the book provides a detailed introduction to the field and a framework for study and skill development. Each case study is supported by selected readings from both philosophy and mental health, thinking skills exercises, self-test questions, key learning points and detailed guides to further reading. There is an introduction for philosophers to classification and descriptive psychopathology, and for practitioners to philosophical methods (including logic). The philosophical topics covered include philosophical methods (analytic and Continental); phenomenology, hermeneutics and existentialism, logical empiricism and its successors; idealism and realism; reasons and causes; and modern theories of mind and brain, free will and personal identity. Topics from mental health include psychiatry and 'anti-psychiatry'; Jaspers' psychopathology and the new neurosciences; the future of psychiatric classifications; strengths-based approaches, recovery practice, social inclusion and diversity; and key topics in psychopathology, such as delusion, autism, disorders of volition, thought insertion and other experiences in schizophrenia. The Oxford Textbook of Philosophy of Psychiatry aims to secure the skills-base of the discipline by bringing philosophers closer to the realities of practice in mental health, and mental health practitioners closer to the resources of philosophy as a partner to the sciences in responding to the challenges of twenty-first century mental health and social care. (shrink)

Drawing on previous empirical research, we provide an exemplary narrative to illustrate how patients have experienced hospital care organized according to evidence‐based fast‐track programmes. The aim of this paper was to analyse and discuss if and how it is possible to include patients’ individual perspectives in an evidence‐based practice as seen from the point of view of nursing theory. The paper highlights two conflicting courses of development. One is a course of standardization founded on evidence‐based recommendations, which specify (...) a set of rules that the patient must follow rigorously. The other is a course of democratization based on patients’ involvement in care. Referring to the analysis of the narrative, we argue that, in the current implementation of evidence‐based practice, the proposed involvement of patients resembles empty rhetoric. We argue that the principles and values from evidence‐based medicine are being lost in the transformation into the current evidence‐based hospital culture which potentially leads to a McDonaldization of nursing practice reflected as ‘one best way’. We argue for reviving ethics of care perspectives in today's evidence practice as the fundamental values of nursing may potentially bridge conflicts between evidence‐based practice and the ideals of patient participation thus preventing a practice of ‘McNursing’. (shrink)

Health care reform is bottled up. Socially responsible physicians, forced to curtail care to uninsured patients, should respond with organized, open defiance, by billing the costs of the care to the accounts of patients covered under Medicaid or Medicare. Reverse cost‐shifting: maybe it could work, certainly it would be justified.

This paper examines caregiving for sick older family members in the context of socio‐economic transformations in rural China, combining empirical investigation with normative inquiry. The empirical part of this paper is based on a case study, taken from fieldwork in a rural Chinese hospital, of a son who took care of his hospitalized mother. This empirical study highlighted family members’ weiqu (sense of unfairness)—a mental status from experiencing mistreatment and oppression in family care, yet with constrained power to (...) explicitly protest or make care‐related choices. Underpinning people’s weiqu and constrained choice, as informed by the conception of structural injustice, is the impact of unjust social structures, organized by unfavourable norms, discriminatory social policies and institutions targeting rural populations. By restraining individual choices and capacities in supporting health care for aging populations, these unjust structures create additional difficulties for and discriminations against rural families and their older members. Some policy recommendations are proposed to mitigate structural injustice so as to empower families and promote care for older people in rural settings. (shrink)

Ethics involves an organized, reasoned approach to gathering and processing data in order to arrive at decisions about what to do, what to value, and/or what virtues to cultivate. A model is proposed for conceptualizing this complex dynamic, which incorporates elements of both rule-and-principle ethics and the ethic of care. The model suggested here has two levels. The first level identifies the components that comprise philosophical reasoning; the second contextualizes and operationalizes the model in relation to the processor’s (...) philosophical stance on the nature of knowing. Three philosophical stances are identified and described: science-dominant, person-dominant, and science-person equilibrium. Physicians tend to process patients from first perspectives, nurses from second. Hence, health team collaboration in moral problem solving is critically important. (shrink)

Calls are increasing for American health care to be organized as a learning health care system, defined by the Institute of Medicine as a health care system “in which knowledge generation is so embedded into the core of the practice of medicine that it is a natural outgrowth and product of the healthcare delivery process and leads to continual improvement in care.” We applaud this conception, and in this paper, we put forward a new ethics (...) framework for it. No such framework has previously been articulated. The goals of our framework are twofold: to support the transformation to a learning health care system and to help ensure that learning activities carried out within such a system are conducted in an ethically acceptable fashion. (shrink)

Many observers have argued that the US health care system could be more efficient, and achieve better outcomes if providers focused more on improving the community's health, not just the welfare of individual patients. The passage of the Affordable Care Act in 2010 seemed to herald the promise of such reforms, and greater integration of the health care and public systems. In this article, we reassess the quest for integration, a quest we call the “integration project.” After (...) examining the modest steps taken so far toward integration, we consider some conceptual barriers to integration as well as some of the risks it might portend for the public health system. Our assessment contributes to wide-ranging debates among public health advocates, practitioners, and policymakers as to the health care system's role in protecting public health, and how the public health system can best be organized to meet expected population health challenges. (shrink)

By setting the focus on issues of dependence and embodiment, feminist work has and continues to radically improve our understanding of Kant’s practical philosophy as one that is not (as it typically has been taken to be) about disembodied abstract rational agents. This paper outlines this positive development in Kant scholarship in recent decades by taking us from Kant’s own comments on women through major developments in Kant scholarship with regard to the related feminist issues. The main aim is to (...) provide an overview of the philosophical resources already available in the literature as well as a sense of where main interpretive and philosophical challenges currently lie. More specifically, I start with a brief summary of the kinds of statements Kant makes about women that give rise to the many interpretive and philosophical puzzles facing anyone who reads his philosophy carefully. I then provide a brief historical overview of many of the pioneering women Kant scholars who made it possible for there to be so many excellent women scholars in the Kant community today and for firmly establishing the condition of woman as a point of inquiry on the philosophical map. The last section is organized in themes to give the reader a sense of the current, related discussions. I provide an overview of the more recent literature regarding Kant on women, embodiment (sexual objectification, sexual activity, sexual violence, abortion), care relations (marriage, dependents, servants), and systemic injustice (poverty, sex work, and oppression). As we will see, these many engagements with Kant’s philosophy not only help us to better understand our inherited women-undermining and problematic dependency-furthering institutions and practices, but also provide ample philosophical resources that can be utilized in our efforts to envision the project of reform such that we can achieve a better future for each and all. (shrink)

BackgroundRespect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately (...) operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.MethodsUsing PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.ResultsFifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.ConclusionsThree main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations. (shrink)

Advance directives (ADs) have for some time been championed by ethicists and patient associations alike as a tool that people newly diagnosed with dementia, or prior to onset, may use to ensure that their future care and treatment are organized in accordance with their interests. The idea is that autonomous people, not yet neurologically affected by dementia, can design directives for their future care that caregivers are morally obligated to respect because they have been designed by autonomous (...) individuals. In this paper, we first criticize the idea that ADs can retain moral authority in severe dementia by arguing that it is paradoxical. Second, we consider two arguments that initially seem to refute this critique of ADs, but we eventually dismiss them. The first argument states that ADs retain moral authority in severe dementia because autonomously formed interests, for example, ADs, can only be appropriately discarded by autonomous persons. This we term the historical autonomy argument. We dismiss it by demonstrating how we, in analog cases, are not obligated to continue to respect autonomously formed interests even though they have been discarded under nonappropriate conditions. The second argument is that ADs can be justified by what we term external interests. While we agree that people with severe dementia plausible can be said to have external interests, we show that ADs cannot express such interests and hence cannot be justified by them. We conclude that none of the discussed arguments support the use of ADs and because of this, the idea of ADs should be reassigned. (shrink)

Power is a matter of authority and control. It can be wielded either consciously or unconsciously, and it can be either overt or latent. Using a structured questionnaire, this study set out to describe nurses’ opinions about the exercise of power in basic care situations in both acute and long-term care. The questionnaire was organized into four categories in which items concerned: power in obligatory daily activities; power in activities necessitated by obligatory activities; power in voluntary activities; (...) and power in activities that take into account the patient’s characteristics. The samples consisted of 228 nurses from five medical and surgical wards of district hospitals, and 233 nurses from five geriatric units of a community health centre and from one nursing home in Finland. The final response rate was 65% (acute care 76%; long-term care 55%). Data analysis was based on statistical methods. The results showed that, in the nurses’ own opinion, negative power is exercised only in certain situations and in the patient’s best interest, when for instance there are concerns that something may happen to the patient. (shrink)

Joseph Fins's book Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness is a considerable addition to the literature on disorders of consciousness and the murky area of minimally conscious states. Fins brings to this fraught area of clinical practice and neuroethical analysis a series of stories and reflections resulting in a pressing and sustained ethical challenge both to clinicians and to health care systems. The challenge is multifaceted, with diagnostic and therapeutic demands to be met (...) by clinicians and a mix of moral, scientific-economic, and political resonances for health care analysts. Everything in the book resonates with my own clinical experience and the often messy and emotionally wrenching business of providing ongoing care for patients with severe brain injuries and disorders, people who frequently resist the categorizations that well-organized health care systems prefer and that can dictate terms of patient management. (shrink)

Classic feminist social theory highlights the exploitation of women’s labor in capitalist societies traditionally through an examination of how housework and childcare is perceived and organized, excluding an explicit analysis of older adult care work. In light of the surge in the demand for older adult caregiving over the last several decades, this paper uses older adult care work as a new lens to understand how gender, and its intersections with other critical identities such as race, ethnicity, (...) and nativity, are a basis for continued exploitation and marginalization in modern capitalist systems. Building on Marxist feminism and Sylvia Wynter’s work on social value and domination, I argue that women’s care labor, both paid and unpaid, is an instrument of capital accumulation that differentially exploits women based on key intersectional identities. An examination of the system of older adult care work in the United States allows us to see the multilayered and complex system of exploitation that creates and institutionalizes existing social hierarchies as capitalism seeks to expand. The paper ends with a discussion of two potential family care paths America could conceivably pursue in the coming years; one toward increased commodification of care work in line with neoliberal capitalism, and the other toward more comprehensive social welfare policies that alleviate women’s reproductive labor burden and begin to break down gendered and racialized hierarchies. (shrink)

The attention for Moral case deliberation has increased over the past years. Previous research on MCD is often written from the perspective of MCD experts or MCD participants and we lack a more distant view to the role of MCD in Dutch health care institutions in general. The purpose of this paper is to provide an overview of the state of the art concerning MCD in the Netherlands. As part of a larger national study on clinical ethics support in (...) the Netherlands, we will focus on the prevalence and characteristics of MCD in Dutch health. A mixed methods design was used in which we combined two survey questionnaires, two focus groups and 17 individual interviews with top managers or ethics support staff. The findings demonstrate that the prevalence of MCD is relatively high in Dutch health care, especially in mental health care. Institutions with MCD differ from institutions without MCD concerning size, kind of problems and importance of ideological background. Characteristic of MCD is that it often exists for 3 years or more, has a high participation of health professionals and middle managers and is both organized scheduled as unscheduled. As well integration in existing policy as key persons emerge as important issues in relation to the positioning of MCD. We conclude that MCD is a part of an integrated ethics policy and serves as a catalyst for such an integrated ethics policy. (shrink)

In bioethics and health policy, we often discuss the appropriate boundaries of public funding; how the interface of public and private purchasers and providers should be organized and regulated receives less attention. In this paper, I discuss ethical and regulatory issues raised at this interface by three medical practice models in which physicians provide insured services while requiring or requesting that patients pay for services or for the non-insured services of the physicians themselves or their associates. This choice for (...) such practice models is different from the decision to design an insurance plan to include or exclude user fees, co-payments and deductibles. I analyze the issues raised with regards to familiar health care values of equity and efficiency, while highlighting additional concerns about fair terms of access, provider integrity, and fair competition. I then analyze the common Canadian regulatory response to block fee models, considering their extension to wellness clinics, with regards to fiduciary standards governing the physician–patient relationship and the role of informed consent. I close by highlighting briefly issues that are of common concern across different fundamental normative frameworks for health policy. (shrink)