ABSTRACTSince its origin bioethics has been a specialized, academic discipline, focussing on moral issues, using a vast set of globalized principles and rational techniques to evaluate and guide healthcare practices. With the emergence of a plural society, the loss of faith in experts and authorities and the decline of overarching grand narratives and shared moralities, a new approach to bioethics is needed. This approach implies a shift from an external critique of practices towards embedded ethics and interactive practice improvement, and (...) from a legal defence of rights towards fostering interdependent practices of responsibility. This article describes these transitions within bioethics in relation to the broader societal and cultural dynamics within Western societies, and traces the implications for the methodologies and changing roles of the bioethicist. The bioethicist we foresee is not just a clever expert but also a relationally sensitive person who engages stakeholders in reciprocal dialogues about their practice of responsibility and helps to integrate various sorts of knowledge . In order to illustrate this new approach, we present a case study. It concerns a project focusing on an innovation in elderly care, based on the participation of various stakeholders, especially older people themselves. (shrink)

Since its origin bioethics has been a specialized, academic discipline, focussing on moral issues, using a vast set of globalized principles and rational techniques to evaluate and guide healthcare practices. With the emergence of a plural society, the loss of faith in experts and authorities and the decline of overarching grand narratives and shared moralities, a new approach to bioethics is needed. This approach implies a shift from an external critique of practices towards embedded ethics and interactive practice improvement, and (...) from a legal defence of rights towards fostering interdependent practices of responsibility. This article describes these transitions within bioethics in relation to the broader societal and cultural dynamics within Western societies, and traces the implications for the methodologies and changing roles of the bioethicist. The bioethicist we foresee is not just a clever expert but also a relationally sensitive person who engages stakeholders in reciprocal dialogues about their practice of responsibility and helps to integrate various sorts of knowledge (embodied, experiential, visual, and cognitive-scientific). In order to illustrate this new approach, we present a case study. It concerns a project focusing on an innovation in elderly care, based on the participation of various stakeholders, especially older people themselves. (shrink)

Participation of older people in designing and improving the care and services provided in residential care settings is limited. Traditional forms of democratic representation, such as client councils, and consumer models are management-driven. An alternative way of involving older people in the decisions over their lives, grounded in notions of care ethics and deliberative democracy, was explored by action research. In line with this tradition older people engage in collective action to enhance the control over their lives and those of (...) others. In this article the theoretical background of altruistic action is presented and illustrated by a case example of a group of older women who changed the food policies within their residential home. Altruistic action is the joint and coordinated action by a group of clients based on their agenda. Such action is given in by a shared dissatisfaction and search for connections. Altruistic action may enhance the sense of self, belonging and ownership, and create a transformative movement enhancing the wellbeing and community life in residential settings. (shrink)

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. (shrink)

Moral case deliberation (MCD) is a specific form of clinical ethics, aiming to stimulate ethical reflection in daily practice in order to improve the quality of care. This article focuses on the implementation of MCD in nursing homes and the questions how and where to organize MCD. The purpose of this study was to evaluate one way of organizing MCD in two Dutch nursing homes. In both of these nursing homes the MCD groups had a heterogeneous composition and were organized (...) apart from existing institutional communication structures. As part of a naturalistic evaluation, systematic observations, interviews and focus groups were completed. The findings indicate that the heterogeneous composition and MCD meetings separate from existing structures have benefits. However, the participants also reported negative experiences. This gives rise to the question whether a mixed MCD group which meets separately is an effective way to embed MCD as an instrument for reflection on moral issues in daily practice. We conclude that there is no single answer to that question. In the end, the two implementation strategies (i.e. within existing communication structures and a mixed MCD group) can be complementary to each other. (shrink)

Background Implementing person-centred care (PCC) in nursing homes is challenging due to a gap between theory and practice. Bridging this gap requires suitable education, which focuses on learning how to attune care to the values and preferences of residents and take moral, relational, and situational aspects into account. Staff’s stories about the care they provide (i.e. caring stories) may deliver valuable insights for learning about these aspects. However, there is limited research on using staff's narratives for moral learning. Objective This (...) study aims to provide insight into the perspectives of nursing staff on using their caring stories to learn about PCC. Research design In this qualitative research, we conducted two rounds of interviews with 17 participants working in nursing homes. We wanted to obtain nursing staff’s perceptions of working with their caring stories and the impact on PCC. Ethical considerations Participation was voluntary, and participants provided written consent. The study protocol is approved by The Institutional Review Board of the Medical Ethical Committee Leiden-Den Haag-Delft. Findings Working with caring stories enables nursing staff to provide PCC and improves job satisfaction. It increases awareness of what matters to residents, fosters information rich in context and meaning, and enhances voice and vocabulary. Through in-depth team reflections, nursing staff discussed the significant moments for residents, which centralizes the discussions on the moral quality of care. Discussion Working with caring stories fosters dialogue on PCC and enhances reflection on ethical situations in daily encounters, contributing to the moral development of nursing staff. Putting nursing staff’s narratives at the centre of learning suits their daily practice and intrinsic motivation. Therefore, the outcomes of this study are an addition to the existing literature about using narratives in long-term care. Conclusion Using nursing staff's narratives contributes to PCC and positively impacts nursing staff. We recommend using staff's caring stories as a vehicle for moral learning in the transition to PCC. (shrink)

In Western countries a considerable number of older people move to a residential home when their health declines. Institutionalization often results in increased dependence, inactivity and loss of identity or self-worth (dignity). This raises the moral question as to how older, institutionalized people can remain autonomous as far as continuing to live in line with their own values is concerned. Following Walker's meta-ethical framework on the assignment of responsibilities, we suggest that instead of directing all older people towards more autonomy (...) in terms of independence, professional caregivers should listen to the life narrative of older people and attempt to find out how their personal identity, relations and values in life can be continued in the new setting. If mutual normative expectations between caregivers and older people are not carefully negotiated, it creates tension. This tension is illustrated by the narrative of Mr Powell, a retired successful public servant now living in a residential home. The narrative describes his current life, his need for help, his independent frame of mind, and his encounters with institutional and professional policies. Mr Powell sees himself as a man who has always cared for himself and others, and who still feels that he has to fulfil certain duties in life. Mr Powell's story shows that he is not always understood well by caregivers who respond from a one-sided view of autonomy as independence. This leads to misunderstanding and an underestimation of his need to be noticed and involved in the residential community. (shrink)

In this article, we present a dialogical approach to empirical ethics, based upon hermeneutic ethics and responsive evaluation. Hermeneutic ethics regards experience as the concrete source of moral wisdom. In order to gain a good understanding of moral issues, concrete detailed experiences and perspectives need to be exchanged. Within hermeneutic ethics dialogue is seen as a vehicle for moral learning and developing normative conclusions. Dialogue stands for a specific view on moral epistemology and methodological criteria for moral inquiry. Responsive evaluation (...) involves a structured way of setting up dialogical learning processes, by eliciting stories of participants, exchanging experiences in (homogeneous and heterogeneous) groups and drawing normative conclusions for practice. By combining these traditions we develop both a theoretical and a practical approach to empirical ethics, in which ethical issues are addressed and shaped together with stakeholders in practice. Stakeholders' experiences are not only used as a source for reflection by the ethicist; stakeholders are involved in the process of reflection and analysis, which takes place in a dialogue between participants in practice, facilitated by the ethicist. This dialogical approach to empirical ethics may give rise to questions such as: What contribution does the ethicist make? What role does ethical theory play? What is the relationship between empirical research and ethical theory in the dialogical process? In this article, these questions will be addressed by reflecting upon a project in empirical ethics that was set up in a dialogical way. The aim of this project was to develop and implement normative guidelines with and within practice, in order to improve the practice concerning coercion and compulsion in psychiatry. (shrink)

In Western societies, participation is promoted as fundamental right of citizens and a prerequisite for better health and quality of life. Over the last 10 years, individual parti-cipation in treat...

Background Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework that offers a (...) lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. -/- Methods We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. -/- Results Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. -/- Conclusions Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue. (shrink)

This article discusses the challenging context that health care professionals are confronted with, and the impact of this context on their emotional experiences. Care ethics considers emotions as a valuable source of knowledge for good care. Thinking with care ethical theory and looking through a care ethical lens at a practical case example, the authors discern reflective questions that shed light on a care ethical approach toward the role of emotions in care practices, and may be used by practitioners and (...) facilitators for care ethical reflection on similar cases, in the particular and concrete context where issues around emotional experiences arise. The authors emphasize the importance of allowing emotions to exist, to acknowledge them and to not repress them, so that they can serve as a vehicle for ethical behavior in care practices. They stress the difference between acknowledging emotions and expressing them limitlessly. Formational practices and transformational research practices are being proposed to create moral space in care institutions and to support health care professionals to approach the emotionally turbulent practices they encounter in a way that contributes to good care for all those involved. (shrink)

Due to the progress being made in the neurosciences, higher expectations for the use of medication, even against the patient’s will, are arising in mental hospitals. In this article, we will discuss whether the neurosciences and new psychopharmacological solutions really support patients who suffer from mental illnesses. To answer this question, we will focus on the perspective of patients and their experiences with psychiatric (coercive) treatments. The analysis of one person’s story shows that other issues besides appropriate medication are important (...) for recovery from a mental illness. In daily life, issues such as coping, rehabilitation and social support are of major importance for a patient suffering from psychiatric disease. Thus, although progress in the neurosciences is a positive development for clinical practice, it does not mean that (coercive) medication alone will carry a patient into recovery. A patient’s recovery is dependent, not only upon the process of finding the appropriate medication and trust between the psychiatrist and the patient, but also upon relational aspects, such as being recognised as a person, belonging, accepting responsibilities, developing friendships and trusting others. These findings lead to the conclusion that dealing with psychiatric diseases is more complex than what the biomedical model of neuroscience suggests and that one should include the social context of the patient in the recovery process. (shrink)

Moral deliberation has been receiving more attention in nursing ethics. Several ethical conversation models have been developed. This article explores the feasibility of the so-called CARE (Considerations, Actions, Reasons, Experiences) model as a framework for moral deliberation in psychiatric nursing practice. This model was used in combination with narrative and dialogical approaches to foster discourse between various stakeholders about coercion in a closed admission clinic in a mental hospital in the Netherlands. The findings demonstrate that the CARE model provides a (...) substantial framework for structuring moral deliberations. Narratives and dialogue are useful tools for broadening issues in conversations, to engage various stakeholders (including patients), and to gain shared understandings. (shrink)

It is not uncommon that nurses are unable to meet the normative expectations of chronically ill patients. The purpose of this article is to describe and illustrate Walker’s expressive-collaborative view of morality to interpret the normative expectations of two women with multiple sclerosis. Both women present themselves as autonomous persons who make their own choices, but who also have to rely on others for many aspects of their lives, for example, to find a new balance between work and social contacts (...) or to find work. We show that their narratives of identity, relationship and value differ from the narratives that others use to understand and identify them. Since identities, relationships and values give rise to normative expectations, in both cases there is a conflict between what the women expect of their caregivers and vice-versa. The narratives also show that two similar persons with multiple sclerosis may need very different care. This implies that nurses caring for such persons should listen carefully to their stories and reflect on their own perceptions of self. (shrink)

ABSTRACT This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person’s well‐being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of the moral issues in the care for people with dementia is centred on responsibilities; how do people conceive and determine their responsibilities towards one another? To investigate this issue we use the theoretical (...) perspective of Margaret Walker. She states that ideas about identity play a crucial role in patterns of normative expectations with regard to the distribution of responsibilities in daily practices of care. The results of this study show how the identity of a family‐member is put under pressure and changes during her loved one’s illness that leads to difficulties and misunderstandings concerning the issue of responsibility. These results offer an insight into the complexities of actual practices of responsibility and highlight the importance for those caring for people with dementia of attending carefully to how they see themselves and how they see other people involved (Who am I? Who do I want to be for the other?). Answers to such questions show what people expect from themselves and from one another, and how they, at any rate, are distributing responsibilities in a given situation. Professional caregivers should take into account that family members might have different ideas about who they are and consequently about what their responsibilities are. (shrink)

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. (shrink)

Internationally, the prevalence of clinical ethics support (CES) in health care has increased over the years. Previous research on CES focused primarily on ethics committees and ethics consultation, mostly within the context of hospital care. The purpose of this article is to investigate the prevalence of different kinds of CES in various Dutch health care domains, including hospital care, mental health care, elderly care and care for people with an intellectual disability. A mixed methods design was used including two survey (...) questionnaires, sent to all health care institutions, two focus groups and 17 interviews with managing directors or ethics support staff. The findings demonstrate that the presence of ethics committees is relatively high, especially in hospitals. Moral case deliberation (MCD) is available in about half of all Dutch health care institutions, and in two-thirds of the mental health care institutions. Ethics consultants are not very prominent. A distinction is made between explicit CES forms, in which the ethical dimension of care is structurally and professionally addressed and implicit CES forms, in which ethical issues are handled indirectly and in an organic way. Explicit CES forms often go together with implicit forms of CES. MCD might function as a bridge between the two. We conclude that explicit and implicit CES are both relevant for clinical ethics in health care. We recommend research regarding how to combine them in an appropriate way. (shrink)

Ethics support is called for to improve the quality of care in elderly institutions. Various forms of ethics support are presented, but the needs for ethics support remain unknown. Using a mixed-methods design, this article systematically investigates the specific needs for ethics support in elderly care. The findings of two surveys, two focus groups and 17 interviews demonstrate that the availability of ethics support is limited. There is a need for ethics support, albeit not unconditionally. Advice-based forms of ethics support (...) are less appropriate as they are removed from practice. Ethics support should be tailored to the often mundane and easily overlooked moral issues that arise in long-term care. Attention should also be given to the learning styles of nurses who favour experiential learning. Raising awareness and developing a climate of openness and dialogue are the most suitable ways to deal with the mundane moral issues in elderly care. (shrink)

In many western countries informal care is conceived as the answer to the increasing care demand. Little is known how formal and informal caregivers collaborate in the context of an diverse ageing population. The aim of this study was to gain insight in how professionals’ perspectives regarding the collaboration with informal carers with a migration background are framed and shaped by intersecting aspects of diversity. We used an intersectionality informed qualitative design with informal conversations (N = 12) and semi-structured interviews (...) (N = 17) with healthcare professionals working with clients with Acquired Brain Injury. Two critical friends were involved in the analysis which was substantiated by a participatory analysis with a community of practice. We identified four interrelated themes: (a) ‘The difficult Other’ in which professionals reflected on carers with a migration background causing ‘difficulties’; (b) ‘The dependent Other’ refers to professionals’ realization that ‘difficulties’ are intensified by the context in which care takes place; (c) in ‘The uncomfortable self’ professionals describe how feelings of insecurities evoked by the Other are associated with an inability to act ‘professionally’, and; (d) ‘The reflexive self’ shows how some professionals reflect on their own identities and identify their blind spots in collaboration within a care network. These themes demonstrate the tensions, biases and power imbalances between carers and professionals, which may explain some of the existing health disparities perpetuated through care networks. (shrink)

In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co-produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so that outcomes are tailored (...) to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co-production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare. (shrink)

This article deals with the question of how ethicists respond to practical moral problems emerging in health care practices. Do they remain distanced, taking on the role of an expert, or do they become engaged with nurses and other participants in practice and jointly develop contextualized insights about good care? A basic assumption of dialogical ethics entails that the definition of good care and what it means to be a good nurse is a collaborative product of ongoing dialogues among various (...) stakeholders engaged in the practice. This article discusses the value of a dialogical approach to ethics by drawing on the work of various nursing scholars. We present a case example concerning the quality of freedom restrictions for intellectually disabled people. Issues for discussion include the role and required competences of the ethicist and dealing with asymmetrical relationships between stakeholders. (shrink)

Within the current Dutch policy context the role of informal care is revalued. Formal care activities are reduced and family and friends are expected to fill this gap. Yet, there is little research on the moral ambivalences that informal care for loved ones who have severe and ongoing mental health problems entails, especially against the backdrop of neoliberal policies. Giving priority to one’s own life project or caring for a loved one with severe problems is not reconciled easily. Using a (...) case study we illustrate the moral ambivalences that persons may experience when they try to shape their involvement and commitment when a relative is in need. The case comes from a research project which explores whether it is possible to reduce coercive measures in psychiatry by organizing a Family Group Conference. The purpose of the article is to explore what theoretical concepts such as ‘communities of fate’, ‘communities of choice’ and ‘personal communities’ add in understanding how persons shape their involvement and commitment when a family member experiences recurrent psychiatric crises. (shrink)

Within psychiatry, patients, family, and professionals are involved and interrelated. Yet it is not easy for healthcare professionals to involve family actively in patient care. Taking a feminist perspective, we investigate why health-care professionals experience ambivalence in involving family in attempts to reduce seclusion, suggesting how they can improve family involvement by adopting a relational view on autonomy. Professionals should view patients not only in terms of individual autonomy and rights, but also in terms of relations and dependencies that need (...) to be considered in fostering patient care. (shrink)

Palliation is a relatively new concept that is used in connection with the integral care provided to those who are unable to recover from their illness. The specific meaning of the concept has not been clearly defined. This article explores the possibilities offered by a responsive approach to evaluation that can facilitate a reflexive dialogue on this ambiguous concept. In doing so it draws on a case study of a palliative care project in a Dutch health care authority. The article (...) begins with an overview of the characteristics of a responsive approach to evaluation and addresses interpretative, representational and practical dilemmas. It goes on to present a series of dialogues between health professionals, informal caregivers, patients and evaluators. These dialogues take the form of juxtaposed stories, transcribed conversations and interpretations. Finally, the learning experiences are summarised and the appropriateness of the responsive approach to evaluate palliative care is discussed. (shrink)

In the closed wards of mental health institutions, moral decisions are made concerning the use of forced seclusion. In this article we focus on how these moral decisions are made and can be improved. We present a case study concerning moral deliberations on the use of seclusion and its prevention among nurses of a closed mental health ward. Moral psychology provides an explanation of how moral judgments are developed through processes of interaction. We will make use of the Social Intuitionist (...) Model of Jonathan Haidt that emphasizes the role of emotions, intuitions and the social context in moral judgments and reasoning. We argue that this model can help to explain social dynamics in the context of enforced seclusion. In the discussion we explore how moral psychology can be complemented with the normative perspective of dialogical ethics to develop strategies for improving psychiatric practices. We conclude that social processes play an important role in moral deliberations and that moral development can be fostered by bringing in new perspectives in the dialogue. Moral case deliberation provides a practical tool to systematically organize moral reflections among nurses on the work floor. (shrink)

This article is intended to examine the structure and scope of the argumentation drawn in Metaphysics Γ 4, 1006a18-b34. As we shall see, though this passage does not bring a complete proof of the Principle of Non-Contradiction, it corresponds to its first step, which consists in determining the conditions of meaning necessary for discourse. That passage encloses in nuce the reasons which underlie Aristotelian conviction con- cerning the conventional nature of names and also brings to light the way this conven- (...) tional nature of names must be understood according to Aristotle. (shrink)

In nursing ethics the role of narratives and dialogue has become more prominent in recent years. The purpose of this article is to illuminate a relational-narrative approach to ethics in the context of palliative nursing. The case study presented concerns a difficult relationship between oncology nurses and a husband whose wife was hospitalized with cancer. The husband’s narrative is an expression of depression, social isolation and the loss of hope. He found no meaning in the process of dying and death. (...) The oncology nurses were not able to recognize his emotional and existential problems. A narrative perspective inspired by relational ethics indicates that participants may develop a relational narrative that seeks good for all involved in a situation. In palliative nursing this entails open communication about the fragility of life and approaching death. In relational narratives, answers to these ethical dilemmas are co-authored, contingent and contextual. (shrink)

Our ability to rapidly distinguish new from already stored information is important for behavior and decision making, but the underlying processes remain unclear. Here, we tested the hypothesis that contextual cues lead to a preselection of information and, therefore, faster recognition. Specifically, on the basis of previous modeling work, we hypothesized that recognition time depends on the amount of relevant content stored in long-term memory, i.e., set size, and we explored possible age-related changes of this relationship in older humans. In (...) our paradigm, subjects learned by heart four different word lists written in different colors. On the day of testing, a color cue indicated with a probability of 50% that a subsequent word might be from the corresponding list or from a list of new words. The old/new status of the word had to be distinguished via button press. As a main finding, we can show in a sample of n = 49 subjects, including 26 younger and 23 older humans, that response times increased linearly and logarithmically as a function of set size in both age groups. Conversely, corrected hit rates decreased as a function of set size with no statistically significant differences between both age groups. As such, our findings provide empirical evidence that contextual information can lead to a preselection of relevant information stored in long-term memory to promote efficient recognition, possibly by cyclical top-down and bottom-up processing. (shrink)

In ethical theory, different concepts of autonomy can be distinguished. In this article we explore how these concepts of autonomy are combined in theory in the citizenship paradigm, and how this turns out in the practice of care for people with acquired brain injury. The stories of a professional caregiver and a client with acquired brain injury show that the combination of various concepts of autonomy in practice leads to tensions between caregivers and clients. These dynamics are discussed from a (...) care ethics perspective, stressing the importance of relationships and interdependence, as well as paying attention to various, sometimes conflicting, perspectives in a deliberative dialogue. (shrink)

Background: Living with a renal disease often reduces quality of life because of the stress it entails. No attention has been paid to the moral challenges of living with renal disease. Objectives: To explore the moral challenges of living with a renal disease. Research design: A case study based on qualitative research. We used Walker’s ethical framework combined with narrative ethics to analyse how negotiating care responsibilities lead to a new perspective on moral issues. Participants and research context: One case (...) was chosen from 20 qualitative interviews with renal patients in the Netherlands. Ethical considerations: Several actions have been taken to ensure the informed consent, privacy, anonymity and confidentiality of the patient in this article. More details are offered in this article. The study has been conducted in line with the recommendations of the Medical Ethical Committee of the VU Medical Center. Findings: A renal disease can force people to change their identity, relationships, values and responsibilities. The case study illustrates the moral challenges confronting renal patients. Discussion and conclusion:: Moral issues can be raised by the changes to identities, relationships, values and responsibilities caused by renal disease. Support services for renal patients and their relatives should pay more attention to these issues in order to promote self-management. (shrink)

There is a need for person-centred approaches and empowerment of staff within the residential care for older people; a movement called ‘culture change’. There is however no single path for achieving culture change. With the aim of increasing understandings about cultural change processes and the promotion of cultural values and norms associated with person-centred practices, this article presents an action research project set on a unit in the Netherlands providing care for older people with dementia. The project is presented as (...) a case study. This study examines what has contributed to the improvement of participation of older people with dementia in daily occupational and leisure activities according to practitioners. Data was collected by participant observation, interviews and focus groups. The results show that simultaneous to the improvement of the older people’s involvement in daily activities a cultural transformation took place and that the care became more person-centred. Spontaneous interactions and responses rather than planned interventions, analysis and reflection contributed to this. Furthermore, it proved to be beneficial that the process of change and the facilitation of that process reflected the same values as those underlying the cultural change. It is concluded that changes arise from dynamic, interactive and non-linear processes which are complex in nature and difficult to predict and to control. Nevertheless, managers and facilitators can facilitate such change by generating movement through the introduction of small focused projects that meet the stakeholders’ needs, by creating conditions for interaction and sense making, and by promoting the new desired cultural values. (shrink)

The advent of personal genomics companies offering direct translation of scientific data into personal health information, calls into question traditional policies to refuse disclosure of such scientific data to research participants. This seems especially true for population biobanks, as they collect not only genotype information but also associated phenotype information, and thus may be in a unique position to translate their scientific findings into personal health information for their participants. Disclosure of such information seems mandated by the expectations raised by (...) biobanks ('to help bring about the era of personalized medicine') and their participants' rights to know health information, to know clinical research results, to life and health and particularly their right to benefit. Refusals to disclose such information can be grounded in the lack of analytical validity and/or clinical utility of most findings, the need to avoid the therapeutic misconception, the complexity and costs involved in translation and disclosure and the disproportionate burden resulting from the obligation to respect participants' right not to know before any disclosure can be made. Currently, any demands by participants in population biobanks for full disclosure of all pertinent personal health information potentially resulting from the biobank's scientific findings are unlikely to be granted by a Dutch court under Dutch and international law. As the law stands now, a population biobank is neither a doctor nor a personal genomics company. However, in view of the rapid scientific, medical, technological, commercial and social developments, population biobanks must prepare to take more care of their participants' legitimate interest in receiving as much validated personal health information as reasonably possible, in a timely fashion, by developing appropriate translation and disclosure mechanisms. This paper examines whether population biobank participants have the right, under Dutch civil law and international law, to full disclosure, i.e. to all information generated by the biobank that is pertinent to their present and future health. It pioneers the format of a hypothetical court case to elucidate the legal and policy arguments" for and against full disclosure. (shrink)

Em diversas ocasiões, Leibniz recorre à autoridade de Aristóteles a fim de roborar sua tese da verdade como inerência do predicado ao sujeito da proposição. Não é, contudo, evidente em que medida a filosofia aristotélica poderia oferecer amparo a essa reivindica- ção. Afinal, a Aristóteles tradicionalmente se atribui uma concepção de verdade diferente, consistente em uma relação de correspondência entre a proposição e a realidade que ela se destina a descrever. Sem discutir a conhecida tese da verdade como correspondência, este (...) trabalho é dedicado a investigar em que medida os escritos de Aristóteles permitem que Leibniz respalde neles as suas afirmações. Para tanto, a presente investigação estará focada nos Primeiros e os Segundos Analíticos, obras em que Aristóteles expõe sua teoria do racio- cínio e da demonstração. Visa-se averiguar se, e sob que condições, a noção de inerência ali mobilizada pode ser assimilada à noção leibniziana de inerência. (shrink)

This article analyses Averroes/Ibn Rushd´s (d. 1198) views on motherhood in his commentary on Plato´s Republic. The starting point for this inquiry is Averroes´ comparison of the women in his society to plants. Averroes argues that performing the duties of motherhood, i.e. being children´s primary caregiver, does not constitute nor involve any form of human virtue. Averroes´ low esteem for activities of motherhood has hitherto been ignored. This paper argues that the comparison of women to plants does not hinge on (...) societal criticism solely but on at least two additional factors: Aristotle on plants in De Anima and on this low appreciation for tasks of parenthood. Furthermore, this paper aims to show that the latter is incompatible with Aristotle´s views in his ethics and biology, which emphasize, respectively, the friendship that characterizes the parent-child relationship and the intelligence and virtue needed to raise the next generation. (shrink)

For the past several years patients have been expected to play a key role in their recovery. Self management and disease management have reached a hype status. Considering these recent trends what does this mean for the division of responsibilities between doctors and patients? What kind of role should healthcare providers play? With findings based on a qualitative research project of an innovative practice for people with Chronic Obstructive Pulmonary Disease (COPD) we reflect on these questions. In-depth interviews conducted with (...) people with COPD, physiotherapists and a pulmonologist show that shifting responsibilities require a supportive attitude from healthcare providers and a dialogical communication between patients and professionals. Our findings show more is needed in order to motivate people with COPD to take responsibility and become co-owners in a process of recovery. The case example illustrates that people with COPD need support from fellow patients to learn to accept their disabilities. Awareness that COPD is more than just a lack of air, that mind and body interact, is a first step to investigate other potential problems and to enhance one’s quality of life. (shrink)

The expansion of the older population suggests that there will be significant numbers in need of care and support in their own home environment. Yet, little is known about the kind of situations professionals are faced with and how they intervene in the living environment of older people. Qualitative data were collected over a period of 1.5 years from a multi-disciplinary community-based geriatric team in the Netherlands, and participant observations carried out. Forty-two cases discussed within the team meetings were analysed. (...) Results demonstrate that providing care to older people is a dynamic process and revolves around various paradoxes as experienced by professionals. This is illustrated by presenting three paradoxes that emerged within the data: respecting autonomy versus preserving safety; the care needs of the care recipients versus the capacity of their informal carers to cope; and holding a formal orientation versus a tailored orientation on tasks. Providing care in the home environment of older people requires from professionals a continuous anticipation of (un)expected evolutions in situations of their care recipients. In order to optimally support older people professionals need ‘professional discretion’. They must be supported to systematically reflect on and legitimize their intervention strategies. (shrink)

The traditional organizational boundaries between healthcare, social work, police and other non-profit organizations are fading and being replaced by new relational patterns among a variety of disciplines. Professionals work from their own history, role, values and relationships. It is often unclear who is responsible for what because this new network structure requires rules and procedures to be re-interpreted and re-negotiated. A new moral climate needs to be developed, particularly in the early stages of integrated services. Who should do what, with (...) whom and why? Departing from a relational and hermeneutic perspective, this article shows that professionals in integrated service networks embark upon a moral learning process when starting to work together for the client’s benefit. In this context, instrumental ways of thinking about responsibilities are actually counterproductive. Instead, professionals need to find out who they are in relation to other professionals, what core values they share and what responsibilities derive from these aspects. This article demonstrates moral learning by examining the case of an integrated social service network. The network’s development and implementation were supported by responsive evaluation, enriched by insights of care ethics and hermeneutic ethics. (shrink)

Fetal alcohol spectrum disorders is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identified with a condition within FASD remains controversial. The objective of the present study was to identify ethical aspects and consequences of diagnostics, interventions, and family support in relation to FASD. Ethical aspects relating to diagnostics, interventions, and family support regarding FASD were compiled and discussed, drawing on a series of discussions (...) with experts in the field, published literature, and medical ethicists. Several advantages and disadvantages in regards of obtaining a diagnosis or description of the condition were identified. For instance, it provides an explanation and potential preparedness for not yet encountered difficulties, which may play an essential role in acquiring much needed help and support from health care, school, and the social services. There are no interventions specifically evaluated for FASD conditions, but training programs and family support for conditions with symptoms overlapping with FASD, e.g. ADHD, autism, and intellectual disability, are likely to be relevant. Stigmatization, blame, and guilt are potential downsides. There might also be unfortunate prioritization if individuals with equal needs are treated differently depending on whether or not they meet the criteria for a specific condition. The value for the concerned individuals of obtaining a FASD-related description of their condition – for instance, in terms of wellbeing – is not established. Nor is it established that allocating resources based on whether individuals fulfil FASD-related criteria is justified, compared to allocations directed to the most prominent specific needs. (shrink)

In Dutch healthcare policy patients are seen as informed, autonomous experts and active decision makers with control over their illness and care. Healthcare professionals are expected to operate as providers of information. The purpose of this article is to argue that the consumerist approach of the patient–professional relationship is not a productive way to envision the patient–professional relationship. We argue that an interpretive/deliberative model is a more productive way to envision this relationship, especially in the care for people with a (...) chronic illness. This is illustrated with a case study. It concerns a study of the experiences of a Multiple Sclerosis (MS) patient and healthcare professionals involved in her care. The presented stories show that the participants did not act in line with the roles and responsibilities embodied in the consumerism rhetoric in Dutch healthcare policy. Expectations of patients and healthcare professionals are better met when care is redefined as mutual endeavour in which the caring abilities of healthcare professionals and the vulnerability of chronically ill patients are taken into account. (shrink)

An authoethnography explores the lived experiences of patients being in control and self-managing their chronic illness among their families and friends. Findings show that the current health discourse narrows down people to mere patients and gives rise to tensions. This article indicates that people with one or several chronic illnesses or disabilities are first of all full citizens with needs, values, and drives seeking a meaningful life. Fair possibilities ought to exist to satisfy their needs to belong, to care for (...) and to matter to others since these constitute an essential aspect of being human. (shrink)

ABSTRACT Background: From a phenomenological perspective, our body is the “from-which” we face the world. Vice versa, our body is affected by occurrences in our surroundings. Embodied resilience is understood as a quality of the dynamic relationships between our affected body and what happens in our surroundings. Objectives: This article explores the following question: How is resilience experienced bodily and how can we strengthen resilience and foster social relations? Research design: The data consists of ten in-depth interviews, personal observations and (...) reflexive dialogues with the research team on the lived experiences of the participants. Interpretative phenomenological analysis is applied, and relevant literature is outlined in the discussion and the findings are presented. Findings: We discovered three intertwined experiential dimensions of embodied resilience: the experience of (1) sensing: becoming aware of what bodily happened; (2) connecting: looking for resources; and (3) responding: moving towards a new equilibrium. Discussion and conclusion: Lived, embodied experiences play an important role in the dynamic process of resilience. The body helps us resonate with the world we live in. We recommend researching further how an affective touch can enhance embodied resilience and foster social relationships in organisations. (shrink)

This book explores the intersection of evaluation studies and care ethics in contemporary Western societies. In all societies and institutions, large and small, we find forces that can strengthen or destroy their fabric. One new regulation, law, or policy can impact the lives of many who find themselves in precarious positions. Think, for example, about health care reform and migrant policies in various Western countries and their effects on the everyday lives of millions of people. Policies, programs, and those who (...) execute them can threaten the daily routines of our lives, and we can respond by withdrawing or freezing, doing nothing and thinking it will pass. Or we can respond with resistance, anger, and sometimes much worse, like the shootings in several American cities. (shrink)

No espaço midiático, o culto à aparência corporal propaga a imagem de um corpo feminino bonito, jovem e magro. Com relação à mulher que vive no campo, a imagem difundida é de uma mulher alheia aos cuidados com a beleza, “desleixada”. O objetivo dessa pesquisa foi avaliar a satisfação com a imagem corporal e a influência dos meios de comunicação em mulheres em um assentamento rural de Jataí-Go. Foi aplicado o Body Shape Questionnaire a 25 mulheres e realizada entrevista com (...) oito mulheres. Os resultados indicam que maioria das participantes está satisfeita com a sua imagem corporal, embora afirmem que realizariam algum procedimento cirúrgico para fins estéticos. (shrink)

When it comes to understanding the genesis and development of Heidegger’s thought, it would be rather difficult to overestimate the importance of the “Aristotle-Introduction” of 1922, Heidegger’s “Phenomenological Interpretations with Respect to Aristotle.” This text is both a manifesto which describes the young Heidegger’s philosophical commitments, as well as a promissory note which outlines his projected future work. This Aristotle-Introduction not only enunciates Heidegger’s broad project of a philosophy which is both systematic and historical; it also indicates, in particular, why (...) a principal (or fundamental) ontology can be actualized only through a destruction of the history of ontology. This text anticipates several central themes of Being and Time (e.g., facticity, death, falling), and also foreshadows some of the issues which were to occupy the later Heidegger (e.g., “truth” as a heterogenous process of unconcealment). There is no doubt that much can – and will – be written on the meaning and implications of this important text. But instead of making my own, early contribution to such a secondary literature, I have decided to limit myself in this “Preface” to a few brief remarks concerning the historical background to Heidegger’s “Phenomenological Interpretations with Respect to Aristotle.”. (shrink)

In the last decade, Family Group Conferences have increasingly been used to help people and their networks deal with their problems. The FGC fits well with the call for equal rights and self-management coming from clients and client movements, as well as the economy-driven pressure towards more informal and less professional care coming from governments. However, there is a lack of knowledge about the underlying theory to explain how the FGC works. In this article, we aim to provide such a (...) theoretical basis by examining how the concept of empowerment can be linked with the basic assumptions underlying the FGC. Can making a plan of their own indeed help to empower people and if so, how does the process of empowerment proceed? Empowerment is often mentioned as a goal of the FGC, but authors are not unanimous when it comes to the operationalisation of empowerment, especially on the relational level of the person in his or her social context. In the article, we use the concepts of relational autonomy and resilience to conceptualize empowerment on the relational and individual level. (shrink)