Much bioethical scholarship is concerned with the social, legal and philosophical implications of new and emerging science and medicine, as well as with the processes of research that under-gird these innovations. Science and technology studies (STS), and the related and interpenetrating disciplines of anthropology and sociology, have also explored what novel technoscience might imply for society, and how the social is constitutive of scientific knowledge and technological artefacts. More recently, social scientists have interrogated the emergence of ethical issues: they have documented how particular matters come to be regarded as in some way to do with ‘ethics’, and how this in turn enjoins particular types of social action. In this paper, I will discuss some of this and other STS (and STS-inflected) literature and reflect on how it might complement more ‘traditional’ modes of bioethical enquiry. I argue that STS might (1) cast new light on current bioethical issues, (2) direct the gaze of bioethicists towards matters that may previously have escaped their attention, and (3) indicate the import not only of the ethical implications of biomedical innovation, but also how these innovative and other processes feature ethics as a dimension of everyday laboratory and clinical work. In sum, engagements between STS and bioethics are increasingly important in order to understand and manage the complex dynamics between science, medicine and ethics in society.
Biomedical technology; Biomedicine; Empirical bioethics; Innovation; Science and technology studies; Sociology of bioethics
Our study presents an overview of the issues that were brought forward by participants of a moral case deliberation (MCD) project in two elderly care organizations. The overview was inductively derived from all case descriptions (N = 202) provided by participants of seven mixed MCD groups, consisting of care providers from various professional backgrounds, from nursing assistant to physician. The MCD groups were part of a larger MCD project within two care institutions (residential homes and nursing homes). Care providers are confronted with a wide variety of largely everyday ethical issues. We distinguished three main categories: ‘resident’s behavior’, ‘divergent perspectives on good care’ and ‘organizational context’. The overview can be used for agendasetting when institutions wish to stimulate reflection and deliberation. It is important that an agenda is constructed from the bottom-up and open to a variety of issues. In addition, organizing reflection and deliberation requires effort to identify moral questions in practice whilst at the same time maintaining the connection with the organizational context and existing communication structures. Once care providers are used to dealing with divergent perspectives, inviting different perspectives (e.g. family members) to take part in the deliberation, might help to identify and address ethical ‘blind spots’.
Ethical issues; Clinical ethics; Moral case deliberation; Nursing home; Care home; Elderly care
In vocational rehabilitation, empowerment is understood as the notion that people should make an active, autonomous choice to find their way back to the labour process. Following this line of reasoning, the concept of empowerment implicitly points to a specific kind of activation strategy, namely labour participation. This activation approach has received criticism for being paternalistic, disciplining and having a one-sided orientation on labour participation. Although we share this theoretical criticism, we want to go beyond it by paying attention to the practical consequences of understanding empowerment as an activation strategy. Inspired by the field of Science and Technology Studies, we will explore the meaning of empowerment and activation in concrete practices of vocational rehabilitation in the Netherlands. Our analysis is based on the narratives of people with a work disability about their lives and the vocational rehabilitation programmes they participated in. We present five illustrative cases that how empowerment is ‘done’ in the practice of vocational rehabilitation and its unintended effects. Our analysis demonstrates that activation strategies seem to be caught in a paradox: instead of including people in society, they have excluding consequences. Vocational rehabilitation professionals can go beyond this paradox by learning from the ways in which empowerment is ‘done’ by clients in vocational rehabilitation programmes.
Activation; Empowerment; Narrative analysis; Health care practices; Vocational rehabilitation
Health care organizations are constantly seeking ways to improve quality of care and one of the often-posed solutions to deliver ‘good care’ is reflexivity. Several authors stress that enhancing the organizations’ and caregivers’ reflexivity allows for more situated, and therefore better care. Within quality improvement initiatives, devices that guarantee quality are also seen as key to the delivery of good care. These devices do not solely aim at standardizing work practices, but are also of importance in facilitating reflexivity. In this article, we study how quality improvement devices position the relationship between situated reflection and standardization of work processes. By exploring the work of Michel Callon, Michael Lynch, and Lucy Suchman on reflexivity in work practices, we study the development and introduction of the Care Living Plan. This device aimed to transform care organizations of older people from their orientation towards the system of care into organizations that take a client-centred approach. Our analysis of the construction of specific forms of reflexivity in quality devices indicates that the question of reflexivity does not need to be opposed to standardization and needs to be addressed not only at the level of where reflexivity is organizationally situated and who gets to do the reflecting, but also on the content of reflexivity, such as what are the issues that care workers can and cannot reflect upon. In this paper we point out the theoretical importance of a more detailed empirical study of the framing of reflexivity in care practices.
Care for older people; Good care; Reflexivity; Quality improvement; Quality improvement devices; Medicine & Public Health; Public Health/Gesundheitswesen; Ethics; Health Informatics; Philosophy of Medicine
The aim of this study is to describe how hermeneutic photography and one application of hermeneutic photography in particular, namely the photo-instrument, can be used as a health care intervention that fosters meaning (re-)construction of mental illness experiences. Studies into the ways how patients construct meaning in illness narratives indicate that aesthetic expressions of experiences may play an important role in meaning making and sharing. The study is part of a larger research project devoted to understanding the photostories that result from groups of psychiatric patients using the photo-instrument. Within a focused ethnography approach we employed a qualitative design of a single case study. Text analysis of photostories was combined with observational data. Data were analyzed using hermeneutic theory. Participant observations were used for triangulation and complementarity. The interaction and collaboration between health care professionals and patients in the context of a photo group emerged as core concept that underlies the photo-instrument. The interaction triggered a reframing of meaning in the patient’s illness narrative that offered new perspectives on positive identity growth. The role of visualizing meaning in images was found to lend a dynamic power to the process and triggered a dialectic between real life circumstances and imagination played out in the context of situated action. The findings suggest that a positive reframing of meaning in illness narratives is facilitated by the photo-instrument.
Hermeneutics; Mental health and illness; Rehabilitation; Recovery; Research; Qualitative; Medicine & Public Health; Public Health/Gesundheitswesen; Ethics; Health Informatics; Philosophy of Medicine
Health technology assessment (HTA) was developed in the 1970s and 1980s to facilitate decision making on the desirability of new biomedical technologies. Since then, many of the standard tools and methods of HTA have been criticized for their implicit normativity. At the same time research into the character of technology in practice has motivated philosophers, sociologists and anthropologists to criticize the traditional view of technology as a neutral instrument designed to perform a specific function. Such research suggests that the tools and methods of more traditional forms of HTA are often inspired by an ‘instrumentalist’ conception of technology that does not fit the way technology actually works. This paper explores this hypothesis for a specific case: the assessments and deliberations leading to the introduction of breast cancer screening in the Netherlands. After reconstructing this history of HTA ‘in the making’ the stepwise model of HTA that emerged during the process is discussed. This model was rooted indeed in an instrumentalist conception of technology. However, a more detailed reconstruction of several episodes from this history reveals how the actors already experienced the inadequacy of some of the instrumentalist presuppositions. The historical case thus shows how an instrumentalist conception of technology may result in implicit normative effects. The paper concludes that an instrumentalist view of technology is not a good starting point for HTA and briefly suggests how the fit between HTA methods and the actual character of technology in practice might be improved.
Health technology assessment; Methods; Values; Ethics; Neutrality; Evidence; Mammography; Breast cancer screening; Instrumental view of technology
To explore whether market reforms in a health care system affect medical professional ethics of hospital-based specialists on the one hand and physicians in independent practices on the other. Qualitative interviews with 27 surgeons and 28 general practitioners in The Netherlands, held 2–3 years after a major overhaul of the Dutch health care system involving several market reforms. Surgeons now regularly advertise their work (while this was forbidden in the past) and pay more attention to patients with relatively minor afflictions, thus deviating from codes of ethics that oblige physicians to treat each other as brothers and to treat patients according to medical need. Dutch GPs have abandoned their traditional reticence and their fear of medicalization. They now seem to treat more in accordance with patients’ preferences and less in accordance with medical need. Market reforms do affect medical professional principles, and it is doubtful whether these changes were intended when Dutch policy makers decided to introduce market elements in the health care system. Policy makers in other countries considering similar reforms should pay attention to these results.
Medical professional ethics; Market reforms; Surgeons; General practitioners
The idea behind this article is to discuss the importance and to develop the concept of reciprocity in asymmetric professional relationships. As an empirical starting point for an examination of the possible forms of reciprocity between patients and nurses in psychiatry, we chose two qualitative in-depth interviews with two different patients. The manners in which these two patients relate to medical personnel—one is dependent, the other is independent—show that this presents challenges to nurses. The theoretical context is provided by the notion of mature care as it has been developed by feminist-oriented ethics of care, in contrast to the notion of altruistic care. In relation to the concept of mature care, we discuss how nursing can be perceived in demanding relationships with patients in psychiatry. Reciprocity implies that, in principle, the interests of the nurses also matter in a nurse-patient relationship. We show that reciprocity—in practice—is complicated and challenging in a number of different ways. Mature care—with its systematic inclusion of relationships and reciprocity—provides an alternative understanding of what takes place between patients and nurses compared with an altruistic notion of care. As such, mature care can be regarded as an useful paradigm for nurse-patient relationships in psychiatry.
Altruism; Asymmetric professional relationships; Mature care; Nurse-patient relationships; Psychiatric nursing; Qualitative research/interviews; Reciprocity
In this article I argue that the ethics of care provides us with a novel reading of human relations, and therefore makes possible a fresh approach to several empirical challenges. In order to explore this connection, I discuss some specific normative features of the ethics of care—primarily the comprehension of the moral agent and the concept of care—as these two key elements contribute substantially to a new ethical outlook. Subsequently, I argue that the relational and reciprocal mode of thinking with regard to the moral agent must be extended to our understanding of care. I term this comprehension “mature care”. Citing conflicts of interests as examples, I demonstrate how this conceptualization of care may further advance the ethics of care’s ability to take on empirical challenges. Finally, I discuss political implications that may emanate from the ethics of care and the concept of mature care.
The ethics of care; Care epistemology; Conflicts; Mature care; Relational ontology; Moral philosophy
In moral case deliberation (MCD), healthcare professionals meet to reflect upon their moral questions supported by a structured conversation method and non-directive conversation facilitator. An increasing number of Dutch healthcare institutions work with MCD to (1) deal with moral questions, (2) improve reflection skills, interdisciplinary cooperation and decision-making, and (3) develop policy. Despite positive evaluations of MCD, organization and implementation of MCD appears difficult, depending on individuals or external experts. Studies on MCD implementation processes have not yet been published. The aim of this study is to describe MCD implementation processes from the perspective of nurses who co-organize MCD meetings, so called ‘local coordinators’. Various qualitative methods were used within the framework of a responsive evaluation research design. The results demonstrate that local coordinators work hard on the pragmatic implementation of MCD. They do not emphasize the ethical and normative underpinnings of MCD, but create organizational conditions to foster a learning process, engagement and continuity. Local coordinators indicate MCD needs firm back-up from management regulations. These pragmatic action-oriented implementation strategies are as important as ideological reasons for MCD implementation. Advocates of clinical ethics support should pro-actively facilitate these strategies for both practical and ethical reasons.
Work floor involvement; Clinical ethics; Co-ownership; Hidden voices; Implementation; Moral case deliberation; Participation; Responsive evaluation
Most of us have two strong intuitions (or sets of intuitions) in relation to fairness in health care systems that are funded by public money, whether through taxation or compulsory insurance. The first intuition is that such a system has to treat patients (and other users) fairly, equitably, impartially, justly and without discrimination. The second intuition is that doctors, nurses and other health care professionals are allowed to, and may even in some cases be obligated to give preference to the interests of their particular patients or clients over the interests of other patients or clients of the system. These two intuitions are in potential conflict. One of the most obvious ways in which to ensure impartiality in a health care system is to require impartiality of all actors in the system, i.e. to give health care professionals a duty to treat everyone impartially and to deny them the ‘right’ to give their patients preferential treatment. And one of the possible side-effects of allowing individual health care professionals to give preference to ‘their clients’ is to create inequality in health care. This paper explores the conflict and proposes that it can be right to give preference to ‘your’ patients in certain circumstances.
Resource allocation; Preference; Discrimination; Doctor-patient relationship
If ethics of care deals with the nature of relationships, attentiveness, and understanding particular others, narrativity ought to play a central part. Sometimes, caring simply amounts to working with narratives. In the article I claim that narrativity can even be said to be native to an ethics of care. Through an example, I demonstrate how a narrative ethics of care can discern and grasp some moral problems better than the standard theoretical outlooks.
Care; Caring; Consent; Ethics; Ethics of narrative ethics; Jehovah’s Witness; Transfusion
In this paper I introduce a theoretical framework on care developed by the Norwegian nurse and philosopher Kari Martinsen, and I argue that this approach has relevance not only within nursing, but also within clinical medicine. I try to substantiate this claim by analysing some of the key concepts in this approach, and I illustrate the potential clinical relevance of this approach by applying it in relation to two care scenarios. Finally, I discuss some of the concerns that have been raised in relation to the aim of highlighting care in medicine.
Care; Doctor–patient relationship; Ethics of care; Kari Martinsen; Medical ethics; Nursing ethics
The focus of the study is the conflict between care and concern for particular patients, versus considerations that take impartial considerations of justice to be central to moral deliberations. To examine these questions we have conducted qualitative interviews with health professionals in Norwegian hospitals. We found a value norm that implicitly seemed to overrule all others, the norm of ‘making a difference for the patients’. We will examine what such a statement implies, aiming to shed some light over moral dilemmas interwoven in bedside rationing.
Ethics of care; Professional norms; Value norms; Health professionals; Qualitative; Interviews
The lack of economic sustainability of most healthcare systems and a higher demand for quality and safety has contributed to the development of regulation as a decisive factor for modernisation, innovation and competitiveness in the health sector. The aim of this paper is to determine the importance of the principle of public accountability in healthcare regulation, stressing the fact that sunshine regulation—as a direct and transparent control over health activities—is vital for an effective regulatory activity, for an appropriate supervision of the different agents, to avoid quality shading problems and for healthy competition in this sector. Methodologically, the authors depart from Kieran Walshe’s regulatory theory that foresees healthcare regulation as an instrument of performance improvement and they articulate this theory with the different regulatory strategies. The authors conclude that sunshine regulation takes on a special relevance as, by promoting publicity of the performance indicators, it contributes directly and indirectly to an overall improvement of the healthcare services, namely in countries were citizens are more critical with regard to the overall performance of the system. Indeed, sunshine regulation contributes to the achievement of high levels of transparency, which are fundamental to overcoming some of the market failures that are inevitable in the transformation of a vertical and integrated public system into a decentralised network where entrepreneurialism appears to be the predominant culture.
Accountability; Healthcare regulation; Independent regulatory agencies; Sunshine regulation
The theory and practise of care is defined and enacted differently in different national as well as cultural contexts, illuminating how differently constructed the personal and societal structures in Europe are. A common trait is however that care work paid or non-paid, private or public is identified with women. To navigate in the landscape of care and ethics requires taking into account the constitutive relation between one’s identity, embodiment and position. The author suggests conceiving care as an existential condition of life demanded from all human beings. This will free care from the identification with women and pave a way towards a more gender equal and just society with less gender segregation in the labour market and at the arena of education.
Ethics; Care; Gender; Identity; Power
Patient organizations increasingly play an important role in health care decision-making in Western countries. The Netherlands is one of the countries where this trend has gone furthest. In the literature some problems are identified, such as instrumental use of patient organizations by care providers, health insurers and the pharmaceutical industry. To strengthen the position of patient organizations government funding is often recommended as a solution. In this paper we analyze the ties between Dutch government and Dutch patient organizations to learn more about the effects of such a relationship between government and this part of civil society. Our study is based on official government documents and existing empirical research on patient organizations. We found that government influence on patient organizations has become quite substantial with government influencing the organizational structure of patient organizations, the activities these organizations perform and even their ideology. Financing patient organizations offers the government an important means to hold them accountable. Although the ties between patient organizations and the government enable the former to play a role that can be valued as positive by both parties, we argue that they raise problems as well which warrant a discussion on how much government influence on civil society is acceptable.
Civil society; Government influence; Health care decision-making; Patient organizations
Evaluation of quality of life, psychic and bodily well-being is becoming increasingly important in oncology aftercare. This type of assessment is mainly carried out by medical psychologists. In this paper I will seek to show that body experience valuation has, besides its psychological usefulness, a normative and practical dimension. Body experience evaluation aims at establishing the way a person experiences and appreciates his or her physical appearance, intactness and competence. This valuation constitutes one’s ‘body image’. While, first, interpreting the meaning of body image and, second, indicating the limitations of current psychological body image assessment, I argue that the normative aspect of body image is related to the experience of bodily wholeness or bodily integrity. Since this experience is contextualized by a person’s life story, evaluation should also focus on narrative aspects. I finally suggest that the interpretation of body experience is not only valuable to assess a person’s quality of life after treatment, but that it can also be useful in counseling prior to interventions, since it can support patients in making decisions about interventions that will change their bodies. To apply this type of evaluation to oncology practice, a rich and tailored vocabulary of body experiences has to be developed.
Bodily integrity; Body image; Breast cancer; Change in appearance; Narrativity; Phenomenology; Quality of life
The study is designed to provide an informal summary of what is known about consumer switching of health insurance plans and to contribute to knowledge about what motivates consumers who choose to switch health plans. Do consumers switch plans largely on the basis of critical reflection and assessment of information about the quality, and price? The literature suggests that switching is complicated, not always possible, and often overwhelming to consumers. Price does not always determine choice. Quality is very hard for consumers to understand. Results from a random sample survey (n = 2791) of the Alkmaar region of the Netherlands are reported here. They suggest that rather than embracing the opportunity to be active critical consumers, individuals are more likely to avoid this role by handing this activity off to a group purchasing organization. There is little evidence that consumers switch plans on the basis of critical reflection and assessment of information about quality and price. The new data reported here confirm the importance of a group purchasing organizations. In a free-market-health insurance system confidence in purchasing groups may be more important for health insurance choice than health informatics. This is not what policy makers expected and might result a less efficient health insurance market system.
Switching; Health Insurance; Purchasing Groups; Survey
Nurses and ethicists worry that the implementation of care at a distance or telecare will impoverish patient care by taking out ‘the heart’ of the clinical work. This means that telecare is feared to induce the neglect of patients, and to possibly hinder the development of a personal relation between nurse and patient. This study aims to analyse whether these worries are warranted by analysing Dutch care practices using telemonitoring in care for chronic patients in the Netherlands. How do clinical practices of nursing change when telecare devices are introduced and what this means for notions and norms of good nursing? The paper concludes that at this point the practices studied do not warrant the fear of negligence and compromised relations. Quite the contrary; in the practices studied, telecare lead to more frequent and more specialised contacts between nurses and patients. The paper concludes by reflecting on the ethical implications of these changes.
Good nursing; Empirical ethics; Telecare; Clinical practice; Health care technology; Ethnography
In prevention and health promotion interventions, screening methods and risk profile assessments are often used as tools for establishing the interventions’ effectiveness, for the selection and determination of the health status of participants. The role these instruments fulfil in the creation of effectiveness and the effects these instruments have themselves remain unexplored. In this paper, we have analysed the role screening methods and risk profile assessments fulfil as part of prevention and health promotion programmes in the selection, enrolment and participation of participants. Our analysis showed, that screening methods and health risk assessments create effects as they objectify health risks and/or the health status of individuals, i.e., they select the individuals ‘at risk’ and indicate the lifestyle modifications these people are required to make in order to improve their health. Yet, these instruments also reduce the group of participants thereby decreasing the possible effect of interventions, as they provide the legitimisation for people to make choices to whether they enrol or not and what lifestyle changes they incorporate into their lives. In other words, they present a space of interaction, in which agency is distributed across the practice nurses, the participants and the instruments. Decisions were not just made upon the projection of the outcomes of these instruments; decisions that were made by both the patients and practice nurses were the resultant of their opinions on these outcomes that were formed in interaction with the instruments.
Effectiveness; Evaluation of interventions; Legitimisation; Pragmatic process of daily care; Prevention and health promotion; Public health; Rationalisation; Risk profile assessments; Screening methods
Health policy frameworks usually construe environmental protection and human health as harmonious values. Policies that protect the environment, such as pollution control and pesticide regulation, also benefit human health. In recent years, however, it has become apparent that promoting human health sometimes undermines environmental protection. Some actions, policies, or technologies that reduce human morbidity, mortality, and disease can have detrimental effects on the environment. Since human health and environmental protection are sometimes at odds, political leaders, citizens, and government officials need a way to mediate and resolve conflicts between these values. Unfortunately, few approaches to applied bioethics have the conceptual tools to do accomplish this task. Theories of health care ethics have little to say about the environment, and theories of environmental ethics don't say much about human health. In this essay, I defend an approach to ethical decision-making that gives policy-makers some tools for balancing promotion of human health and protection of the environment.
Human health; environment; ethics; policy; bioethics; malaria
Recently, moral deliberation within care institutions is gaining more attention in medical ethics. Ongoing dialogues about ethical issues are considered as a vehicle for quality improvement of health care practices. The rise of ethical conversation methods can be understood against the broader development within medical ethics in which interaction and dialogue are seen as alternatives for both theoretical or individual reflection on ethical questions. In other disciplines, intersubjectivity is also seen as a way to handle practical problems, and methodologies have emerged to deal with dynamic processes of practice improvement. An example is responsive evaluation. In this article we investigate the relationship between moral deliberation and responsive evaluation, describe their common basis in dialogical ethics and pragmatic hermeneutics, and explore the relevance of both for improving the quality of care. The synergy between the approaches is illustrated by a case example in which both play a distinct and complementary role. It concerns the implementation of quality criteria for coercion in Dutch psychiatry.
Coercion; Dialogical ethics; Dialogue; Moral deliberation; Pragmatic hermeneutics; Responsive evaluation; Psychiatry
Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered.
Patient participation; Medical guidelines; Patient-centred medicine