In this article I defend a rule utilitarian approach to paternalistic policies in research with human participants. Some rules that restrict individual autonomy can be justified on the grounds that they help to maximize the overall balance of benefits over risks in research. The consequences that should be considered when formulating policy include not only likely impacts on research participants, but also impacts on investigators, institutions, sponsors, and the scientific community. The public reaction to adverse events in research (such as significant injury to participants or death) is a crucial concern that must be taken into account when assessing the consequences of different policy options, because public backlash can lead to outcomes that have a negative impact on science, such as cuts in funding, overly restrictive regulation and oversight, and reduced willingness of individuals to participate in research. I argue that concern about the public reaction to adverse events justifies some restrictions on the risks that competent, adult volunteers can face in research that offers them no significant benefits. The paternalism defended here is not pure, because it involves restrictions on the rights of investigators in order to protect participants. It also has a mixed rationale, because individual autonomy may be restricted not only to protect participants from harm but also to protect other stakeholders. Utility is not the sole justification for paternalistic research policies, since other considerations, such as justice and respect for individual rights/autonomy, must also be taken into account.
informed consent; justice; paternalism; research participation; risks; utilitarianism
In a severe influenza pandemic, hospitals will likely experience serious and widespread shortages of patient pulmonary ventilators and of staff qualified to operate them. Deciding who will receive access to mechanical ventilation will often determine who lives and who dies. This prospect raises an important question whether pandemic preparedness plans should include some process by which individuals affected by ventilator rationing would have the opportunity to appeal adverse decisions. However, the issue of appeals processes to ventilator rationing decisions has been largely neglected in state pandemic planning efforts. If we are to devise just and effective plans for coping with a severe influenza pandemic, more attention to the issue of appeals processes for pandemic ventilator rationing decisions is needed. Arguments for and against appeals processes are considered, and some suggestions are offered to help efforts at devising more rational pandemic preparedness plans.
Appeals processes; Ethics; Justice; Pandemic influenza; Ventilator rationing
In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances.
Best interests; Children; Compromise; Ethics; Intensive care; Shared decision making
Explicit forms of rationing have already been implemented in some countries, and many of these prioritization systems resort to Norman Daniels’ “accountability for reasonableness” methodology. However, a question still remains: is “accountability for reasonableness” not only legitimate but also fair? The objective of this paper is to try to adjust “accountability for reasonableness” to the World Health Organization’s holistic view of health and propose an evolutionary perspective in relation to the “normal” functioning standard proposed by Norman Daniels. To accomplish this purpose the authors depart from the “normal” functioning standard to a model that promotes effective opportunity for everyone in health care access, because even within the “normal” functioning criteria some treatments and medical interventions should have priority upon others. Equal opportunity function is a mathematical function that helps to hierarchize moral relevant necessities in health care according to this point of view. It is concluded, first, that accountability for reasonableness is an extremely valuable tool to address the issue of setting limits in health care; second, that what is called in this paper “equal opportunity function” might reflect how accountability for reasonableness results in fair limit-setting decisions; and third, that this methodology must be further specified to best achieve fair limit-setting decisions. Indeed, when resources are especially scarce the methodology suggested in this paper might allow not only prioritizing in an “all or nothing” basis but can contribute to a hierarchy system of priorities in health care.
Accountability for reasonableness; Equal opportunity function; Priorities in health care; Rationing
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
Changes in modern societies originate the perception that ethical behaviour is essential in organization’s practices especially in the way they deal with aspects such as human rights. These issues are usually under the umbrella of the concept of social responsibility. Recently the Report of the International Bioethics Committee of UNESCO on Social Responsibility and Health has addressed this concept of social responsibility in the context of health care delivery suggesting a new paradigm in hospital governance. The objective of this paper is to address the issue of corporate social responsibility in health care, namely in the hospital setting, emphasising the special governance arrangements of such complex organisations and to evaluate if new models of hospital management (entrepreneurism) will need robust mechanisms of corporate governance to fulfil its social responsiveness. The scope of this responsible behaviour requires hospitals to fulfil its social and market objectives, in accordance to the law and general ethical standards. Social responsibility includes aspects like abstention of harm to the environment or the protection of the interests of all the stakeholders enrolled in the deliverance of health care. In conclusion, adequate corporate governance and corporate strategy are the gold standard of social responsibility. In a competitive market hospital governance will be optimised if the organization culture is reframed to meet stakeholders’ demands for unequivocal assurances on ethical behaviour. Health care organizations should abide to this new governance approach that is to create organisation value through performance, conformance and responsibility.
Corporate governance; Health care; Hospital; Social responsibility
Client participation in elderly care organizations requires shifting traditional power relations and establishing communicative action that involves the lifeworlds of clients and professionals alike. This article describes a particular form of client participation in which one client was part of a team of professionals in a residential care home. Their joint remit was to plan the implementation of a new personal care file for residents. We describe the interactions within this team through an ethnodrama, based on participant observations and the embodied presence of the researcher (first author). The narratives and voices of all team members are dramatized in this ethnodrama. Throughout the project the team members experienced confusion relating to the confrontation between lifeworld and system, as experienced by the client and professionals in the team. We analyze these tensions by making use of a Habermasian theoretical framework. We conclude that forms for collective client participation in residential care homes should be developed based on communicative action between clients and professionals, with room for emotional engagement.
Patient involvement; Empowerment; Elderly care; Habermas; Ethnodrama; Transformative research
Many older people in western countries express a desire to live independently and stay in control of their lives for as long as possible in spite of the afflictions that may accompany old age. Consequently, older people require care at home and additional support. In some care situations, tension and ambiguity may arise between professionals and clients whose views on risk prevention or health promotion may differ. Following Antonovsky’s salutogenic framework, different perspectives between professionals and clients on the pathways that lead to health promotion might lead to mechanisms that explain the origin of these tensions and how they may ultimately lead to reduced responsiveness of older clients to engage in care. This is illustrated with a case study of an older woman living in the community, Mrs Jansen, and her health and social care professionals. The study shows that despite good intentions, engagement, clear division of tasks and tailored care, the responsiveness to receive care can indeed not always be taken for granted. We conclude that to harmonize differences in perspectives between professionals and older people, attention should be given to the way older people endow meaning to the demanding circumstances they encounter (comprehensibility), their perceived feelings of control (manageability), as well as their motivation to comprehend and manage events (meaningfulness). Therefore, it is important that both clients and professionals have an open mind and attempt to understand each others’ perspective, and have a dialogue with each other, taking the life narrative of clients into account.
Health promotion; Risk prevention; Narratives; Older people; Salutogenesis; Sense of coherence
In previous literature, ethicists mention several goals of Clinical Ethics Support (CES). It is unknown what key persons in healthcare institutions see as main–—and sub-goals of CES. This article presents the goals of CES as perceived by board members and members of ethics support staff. This is part of a Dutch national research using a mixed methods design with questionnaires, focus groups and interviews. Quantitative and qualitative data were analyzed and combined in an iterative process. Four main clusters of goals were found: 1) encouraging an ethical climate, 2) fostering an accountable and transparent organization, 3) developing professionalism and a final goal, overarching the previous three, 4) good care. Most important sub-goals of CES were: attention for ethical issues, raising awareness of ethical issues, fostering ethical reflection and supporting employees. The article ends with a discussion on the desirability to further operationalize the general goal of good care, the context-boundedness of our findings and the need to relate goals of CES to the features of organizational cultures to further improve the integration of CES in healthcare institutions.
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