This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)

BackgroundMoral Case Deliberation is a specific form of bioethics education fostering professionals’ moral competence in order to deal with their moral questions. So far, few studies focus in detail on Moral Case Deliberation methodologies and their didactic principles. The dilemma method is a structured and frequently used method in Moral Case Deliberation that stimulates methodological reflection and reasoning through a systematic dialogue on an ethical issue experienced in practice.MethodsIn this paper we present a case-study of a Moral Case Deliberation with (...) the dilemma method in a health care institution for people with an intellectual disability, describing the theoretical background and the practical application of the dilemma method. The dilemma method focuses on moral experiences of participants concerning a concrete dilemma in practice. By an in-depth description of each of the steps of the deliberation process, we elucidate the educational value and didactics of this specific method.ResultsThe didactics and methodical steps of the dilemma method both supported and structured the dialogical reflection process of the participants. The process shows that the participants learned to recognize the moral dimension of the issue at stake and were able to distinguish various perspectives and reasons in a systematic manner. The facilitator played an important role in the learning process of the participants, by assisting them in focusing on and exploring moral aspects of the case.DiscussionThe reflection and learning process, experienced by the participants, shows competency-based characteristics. The role of the facilitator is that of a Socratic teacher with specific knowledge and skills, fostering reflection, inquiry and dialogue.ConclusionThe specific didactics of the dilemma method is well suited for teaching bioethics in clinical settings. The dilemma method follows an inductive learning approach through a dialogical moral inquiry in which participants develop not only knowledge but also skills, attitude and character. The role of a trained facilitator and a specific view on teaching and practicing ethics are essential when using the dilemma method in teaching health care professionals how to reflect on their own moral issues in practice. (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)

Deliberative ways of dealing with ethical issues in health care are expanding. Moral case deliberation is an example, providing group-wise, structured reflection on dilemmas from practice. Although moral case deliberation is well described in literature, aims and results of moral case deliberation sessions are unknown. This research shows (a) why managers introduce moral case deliberation and (b) what moral case deliberation participants experience as moral case deliberation results. A responsive evaluation was conducted, explicating moral case deliberation experiences by analysing aims (...) (N = 78) and harvest (N = 255). A naturalistic data collection included interviews with managers and evaluation questionnaires of moral case deliberation participants (nurses). From the analysis, moral case deliberation appeals for cooperation, team bonding, critical attitude towards routines and nurses’ empowerment. Differences are that managers aim to foster identity of the nursing profession, whereas nurses emphasize learning processes and understanding perspectives. We conclude that moral case deliberation influences team cooperation that cannot be controlled with traditional management tools, but requires time and dialogue. Exchanging aims and harvest between manager and team could result in co-creating (moral) practice in which improvements for daily cooperation result from bringing together perspectives of managers and team members. (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)

Clinical ethics support, in particular Moral Case Deliberation, aims to support health care providers to manage ethically difficult situations. However, there is a lack of evaluation instruments regarding outcomes of clinical ethics support in general and regarding Moral Case Deliberation (MCD) in particular. There also is a lack of clarity and consensuses regarding which MCD outcomes are beneficial. In addition, MCD outcomes might be context-sensitive. Against this background, there is a need for a standardised but flexible outcome evaluation instrument. The (...) aim of this study was to develop a multi-contextual evaluation instrument measuring health care providers’ experiences and perceived importance of outcomes of Moral Case Deliberation. (shrink)

Moral case deliberation is a dialogue among health care professionals about moral issues in practice. A trained facilitator moderates the dialogue, using a conversation method. Often, the facilitator is an ethicist. However, because of the growing interest in MCD and the need to connect MCD to practice, healthcare professionals should also become facilitators themselves. In order to transfer the facilitating expertise to health care professionals, a training program has been developed. This program enables professionals in health care institutions to acquire (...) expertise in dealing with moral questions independent of the expertise of an ethicist. Over the past 10 years, we developed a training program with a specific mix of theory and practice, aiming to foster the right attitude, skills and knowledge of the trainee. The content and the didactics of the training developed in line with the philosophy of MCD: pragmatic hermeneutics, dialogical ethics and Socratic epistemology. Central principles are: ‘learning by doing’, ‘reflection instead of ready made knowledge’, and ‘dialogue on dialogue’. This paper describes the theoretical background and the didactic content of the current training. Furthermore, we present didactic tools which we developed for stimulating active learning. We also go into lessons we learned in developing the training. Next, we provide some preliminary data from evaluation research of the training program by participants. The discussion highlights crucial aspects of educating professionals to become facilitators of MCD. The paper ends with concluding remarks and a plea for more evaluative evidence of the effectiveness and meaning of this training program for doing MCD in institutions. (shrink)

Background Clinical moral case deliberation consists of the systematic reflection on a concrete moral case␣by health care professionals. This paper presents the study of a 4-year moral deliberation project.Objectives The objectives of this paper are to: (a) describe the practice and the theoretical background of moral deliberation, (b) describe the moral deliberation project, (c) present the outcomes of␣the evaluation of the moral case deliberation sessions, and (d) present the implementation process.Methods The implementation process is both monitored and supported by an (...) interactive responsive evaluation design with: (a) in-depth interviews, (b) Maastricht evaluation questionnaires, (c) evaluation survey, and (d) ethnographic participant observation. In accordance with the theory of responsive evaluation, researchers acted both as evaluators and moderators (i.e. ethicists).Results Both qualitative and quantitative results showed that the moral case deliberations, the role of the ethics facilitator, and the train-the-facilitator program were regarded as useful and were evaluated as (very) positive. Health care professionals reported that they improved their moral competencies (i.e. knowledge, attitude and skills). However, the new trained facilitators lacked a clear organisational structure and felt overburdened with the implementation process. The paper ends with both practical and research suggestions for future moral deliberation projects. (shrink)

In clinical moral decision making, emotions often play an important role. However, many clinical ethicists are ignorant, suspicious or even critical of the role of emotions in making moral decisions and in reflecting on them. This raises practical and theoretical questions about the understanding and use of emotions in clinical ethics support services. This paper presents an Aristotelian view on emotions and describes its application in the practice of moral case deliberation.According to Aristotle, emotions are an original and integral part (...) of (virtue) ethics. Emotions are an inherent part of our moral reasoning and being, and therefore they should be an inherent part of any moral deliberation. Based on Aristotle's view, we examine five specific aspects of emotions: the description of emotions, the attitude towards emotions, the thoughts present in emotions, the reliability of emotions, and the reasonable principle that guides an emotion. We then discuss three ways of dealing with emotions in the process of moral case deliberation. Finally, we present an Aristotelian conversation method, and present practical experiences using this method. (shrink)

Background There has been little attention paid to research on the outcomes of clinical ethics support or critical reflection on what constitutes a good CES outcome. Understanding how CES users perceive the importance of CES outcomes can contribute to a better understanding, use of and normative reflection on CES outcomes. Objective To describe the perceptions of Dutch healthcare professionals on important outcomes of moral case deliberation, prior to MCD participation, and to compare results between respondents. Methods This mixed-methods study used (...) both the Euro-MCD instrument and semi-structured interviews. Healthcare professionals who were about to implement MCD were recruited from nursing homes, hospitals, psychiatry and mentally disabled care institutions. Results 331 healthcare professionals completed the Euro-MCD instrument, 13 healthcare professionals were interviewed. The outcomes perceived as most important were ‘more open communication’, ‘better mutual understanding’, ‘concrete actions’, ‘see the situation from different perspectives’, ‘consensus on how to manage the situation’ and ‘find more courses of action’. Interviewees also perceived improving quality of care, professionalism and the organization as important. Women, nurses, managers and professionals in mentally disabled care rated outcomes more highly than other respondents. Conclusions Dutch healthcare professionals perceived the MCD outcomes related to collaboration as most important. The empirical findings can contribute to shared ownership of MCD and a more specific use of MCD in different contexts. They can inform international comparative research on different CES types and contribute to normative discussions concerning CES outcomes. Future studies should reflect upon important MCD outcomes after having experienced MCD. (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)

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)

BackgroundClinical ethics support aims to support health care professionals in dealing with ethical issues in clinical practice. Although the prevalence of CES is increasing, it does meet challenges and pressing questions regarding implementation and organization. In this paper we present a specific way of organizing CES, which we have called integrative CES, and argue that this approach meets some of the challenges regarding implementation and organization.MethodsThis integrative approach was developed in an iterative process, combining actual experiences in a case study (...) in which we offered CES to a team that provides transgender health care and reflecting on the theoretical underpinnings of our work stemming from pragmatism, hermeneutics and organizational and educational sciences.ResultsIn this paper we describe five key characteristics of an integrative approach to CES; 1. Positioning CES more within care practices, 2. Involving new perspectives, 3. Creating co-ownership of CES, 4. Paying attention to follow up, and 5. Developing innovative CES activities through an emerging design.ConclusionsIn the discussion we compare this approach to the integrated approach to CES developed in the US and the hub and spokes strategy developed in Canada. Furthermore, we reflect on how an integrative approach to CES can help to handle some of the challenges of current CES. (shrink)

An important discussion in contemporary ethics concerns the relevance of empirical research for ethics. Specifically, two crucial questions pertain, respectively, to the possibility of inferring normative statements from descriptive statements, and to the danger of a loss of normativity if normative statements should be based on empirical research. Here we take part in the debate and defend integrated empirical ethical research: research in which normative guidelines are established on the basis of empirical research and in which the guidelines are empirically (...) evaluated by focusing on observable consequences. We argue that in our concrete example normative statements are not derived from descriptive statements, but are developed within a process of reflection and dialogue that goes on within a specific praxis. Moreover, we show that the distinction in experience between the desirable and the undesirable precludes relativism. The normative guidelines so developed are both critical and normative: they help in choosing the right action and in evaluating that action. Finally, following Aristotle, we plead for a return to the view that morality and ethics are inherently related to one another, and for an acknowledgment of the fact that moral judgments have their origin in experience which is always related to historical and cultural circumstances. (shrink)

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

Emotions play an important part in moral life. Within clinical ethics support (CES), one should take into account the crucial role of emotions in moral cases in clinical practice. In this paper, we present an Aristotelian approach to emotions. We argue that CES can help participants deal with emotions by fostering a joint process of investigation of the role of emotions in a case. This investigation goes beyond empathy with and moral judgment of the emotions of the case presenter. In (...) a moral case deliberation, the participants are invited to place themselves in the position of the case presenter and to investigate their own emotions in the situation. It is about critically assessing the facts in the case that cause the emotion and the related (moral) thoughts that accompany the emotion. It is also about finding the right emotion in a given situation and finding the right balance in dealing with that emotion. These steps in the moral inquiry give rise to group learning. It is a process of becoming open towards the perspectives of others, leading to new insights into what is an appropriate emotion in the specific situation. We show how this approach works in moral case deliberation. A physician presents a situation in which he is faced with a pregnant woman who is about to deliver multiple extremely premature infants at the threshold of viability. The moral deliberation of the case and the emotions therein leads to the participants’ conclusion that “compassion” is a more adequate emotion than “sadness”. The emotion “sadness” is pointed towards the tragedy that is happening to the woman. The emotion “compassion” is pointed towards the woman; it combines consideration and professional responsibility. Through the shift towards compassion, participants experienced more creativity and freedom to deal with the sad situation and to support the woman. The paper ends with an analysis and reflection on the deliberation process. In the conclusion we argue for more attention to emotions in clinical ethics support and offer some directions for doing this in the right way. (shrink)

In this article, we present an analysis of bodily integrity in hand transplants from a phenomenological narrative perspective, while drawing on two contrasting case stories. We consider bodily integrity as the subjective bodily experience of wholeness which, instead of referring to actual bodily intactness, involves a positive identification with one’s physical body. Bodily mutilations, such as the loss of a hand, may severely affect one’s bodily integrity. A possible restoration of one’s experience of wholeness requires a process of re-identification. Medical (...) interventions, such as a hand transplant, may improve the possibility of a successful re-identification. However, since the experience of wholeness does not refer simply to physical intactness or impairment, the choice for medical intervention should not be based merely upon the degree of physical mutilation. It should also be based upon the degree to which a person fails in re-identifying with his or her mutilated body. We argue that a normalizing operation is only ethically justifiable if the intervention enables the person to be the body he or she has. (shrink)

BackgroundMoral case deliberation as a form of clinical ethics support is usually implemented in health care institutions and educational programs. While there is no previous research on the use of clinical ethics support on the level of health care regulation, employees of regulatory bodies are regularly confronted with moral challenges. This pilot study describes and evaluates the use of MCD at the Dutch Health Care Inspectorate.The objective of this pilot study is to investigate: 1) the current way of dealing with (...) moral issues at the IGZ; 2) experience with and evaluation of MCD as clinical ethics support, and 3) future preferences and needs regarding clinical ethics support for dealing with moral questions at the IGZ.MethodsWe performed an explorative pilot study. The research questions were assessed by means of: 1) interviews with MCD participants during four focus groups; and 2) interviews with six key stakeholders at the IGZ. De qualitative data is illustrated by data from questionnaires on MCD outcomes, perspective taking and MCD evaluation.ResultsProfessionals do not always recognize moral issues. Employees report a need for regular and structured moral support in health care regulation. The MCD meetings are evaluated positively. The most important outcomes of MCD are feeling secure and learning from others. Additional support is needed to successfully implement MCD at the Inspectorate.ConclusionWe conclude that the respondents perceive moral case deliberation as a useful form of clinical ethics support for dealing with moral questions and issues in health care regulation. (shrink)

Until recently, moral case deliberation (MCD) sessions have mostly been facilitated by external experts, mainly professional ethicists. We have developed a train the facilitator programme for healthcare professionals aimed at providing them with the competences needed for being an MCD facilitator. In this paper, we present the first results of a study in which we evaluated the programme. We used a mixed methods design. One hundred and twenty trained healthcare professionals and five trainers from 16 training groups working in different (...) healthcare organisations throughout the Netherlands were included. After completion of the programme, participants feel sufficiently confident and equipped to facilitate an MCD session. Feeling competent does not mean that participants have no doubts or questions left. Rather, they are aware of their limitations and see the need for continuous learning. According to the respondents, the actual exercise of facilitating MCD during and in between the training sessions contributed most to the development of competences necessary for being an MCD facilitator. Respondents without prior experience of participating in MCD sessions felt less competent after the training than those who had participated in MCD sessions before. Self-attributed competence varied between participants with different professional backgrounds. (shrink)

In today’s pluralistic society, clinical ethics consultation cannot count on a pre-given set of rules and principles to be applied to a specific situation, because such an approach would deny the existence of different and divergent backgrounds by imposing a dogmatic and transcultural morality. Clinical ethics support (CES) needs to overcome this lack of foundations and conjugate the respect for the difference at stake with the necessity to find shared and workable solutions for ethical issues encountered in clinical practice. We (...) argue that a pragmatist approach to CES, based on the philosophical theories of William James, John Dewey, and Charles Sanders Peirce, can help to achieve the goal of reaching practical solutions for moral problems in the context of today’s clinical environment, characterized by ethical pluralism. In this article, we outline a pragmatist theoretical framework for CES. Furthermore, we will show that moral case deliberation, making use of the dilemma method, can be regarded an example of a pragmatist approach to CES. (shrink)

The current process towards formalization within evaluation research, in particular the use of pre-set standards and the focus on predefined outcomes, implies a shift of ownership from the people who are actually involved in real clinical ethics support services in a specific context to external stakeholders who increasingly gain a say in what ‘good CESS’ should look like. The question is whether this does justice to the insights and needs of those who are directly involved in actual CESS practices, be (...) it as receivers or providers. We maintain that those actually involved in concrete CESS practices should also be involved in its evaluation, not only as respondents, but also in setting the agenda of the evaluation process and in articulating the criteria by which CESS is evaluated. Therefore, we propose a participatory approach to CESS evaluation. It focuses on the concrete contexts in which CESS takes place, reflective and dialogical learning processes, and how to be democratic and inclusive. In particular, this approach to CESS evaluation is akin to realist evaluation, dialogical evaluation, and responsive evaluation. An example of a participatory approach to evaluating CESS is presented and some critical issues concerning this approach are discussed. (shrink)

The research climate plays a key role in fostering integrity in research. However, little is known about what constitutes a responsible research climate. We investigated academic researchers’ perceptions on this through focus group interviews. We recruited researchers from the Vrije Universiteit Amsterdam and the Amsterdam University Medical Center to participate in focus group discussions that consisted of researchers from similar academic ranks and disciplinary fields. We asked participants to reflect on the characteristics of a responsible research climate, the barriers they (...) perceived and which interventions they thought fruitful to improve the research climate. Discussions were recorded and transcribed at verbatim. We used inductive content analysis to analyse the focus group transcripts. We conducted 12 focus groups with 61 researchers in total. We identified fair evaluation, openness, sufficient time, integrity, trust and freedom to be mentioned as important characteristics of a responsible research climate. Main perceived barriers were lack of support, unfair evaluation policies, normalization of overwork and insufficient supervision of early career researchers. Possible interventions suggested by the participants centered around improving support, discussing expectations and improving the quality of supervision. Some of the elements of a responsible research climate identified by participants are reflected in national and international codes of conduct, such as trust and openness. Although it may seem hard to change the research climate, we believe that the realisation that the research climate is suboptimal should provide the impetus for change informed by researchers’ experiences and opinions. (shrink)

Psychiatry presents a unique array of difficult ethical questions. However, a major challenge is to approach psychiatry in a way that does justice to the real ethical issues. Recently there has been a growing body of research in empirical psychiatric ethics, and an increased interest in how empirical and philosophical methods can be combined. Empirical Ethics in Psychiatry demonstrates how ethics can engage more closely with the reality of psychiatric practice and shows how empirical methodologies from the social sciences can (...) help foster this link. -/- The book is divided into two sections. In the first section there are discussions of the possibility of empirical ethics from a theoretical standpoint and an overview of the history of empirical medical ethics in general. The second, larger section is made up of chapters, discussing specific research projects in empirical psychiatric ethics. The contributors reflect on their choice of method: how and why they combine empirical and philosophical work, and how the two approaches relate to each other. The chapters in the second part thus have two purposes. The first is to present examples of empirical ethics in psychiatry; the second is to reflect on the way in which empirical research can support ethical analysis. -/- Empirical Ethics in Psychiatry is a unique contribution to bioethics and will be fascinating reading for all those working within the field, as well as mental health care professionals. (shrink)

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

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)

In healthcare practice, care providers are confronted with decisions they have to make, directly affecting patients and inevitably harmful. These decisions are tragic by nature. This study investigates the role of Moral Case Deliberation in dealing with tragic situations. In MCD, caregivers reflect on real-life dilemmas, involving a choice between two ethical claims, both resulting in moral damage and harm. One element of the reflection process is making explicit the harm involved in the choice. How harmful are our decisions? We (...) investigated how facilitators of MCD experience the importance of addressing harm in MCD and what participants learn from reflecting on harm. The study was qualitative, focusing on the views and experiences of the facilitators of MCD. Semi-structured interviews were conducted with facilitators of MCD. The research focuses on the subjective experiences of facilitators. Grounded Theory was used for analysis. The results show two main categories. The first concerns the awareness of tragedy. Within this category, five themes were discerned: making explicit that there is no solution, visualizing consequences, uncovering pain, focusing on emotion, and exploring perspectives on harm. The second category concerns the support for healthcare professionals in dealing with the tragedy of the choices they face. In this category, five themes came forward: acknowledging, offering comfort, managing harm, consideration through dialogue and repairing harm. Our study shows that addressing harm in MCD in tragic situations provides an important moral learning opportunity for participants. By formulating and becoming aware of harm, MCD aids healthcare professionals in the task they are faced with, namely making difficult and painful choices. MCD helps healthcare professionals to repair moral damage, making clear at the same time that harm cannot be undone. (shrink)

In this paper we introduce narrative and hermeneutical perspectives to clinical ethics support services (CESS). We propose a threefold consideration of ‘theory’ and show how it is interwoven with ‘practice’ as we go along. First, we look at theory in its foundational role: in our case ‘narrative ethics’ and ‘philosophical hermeneutics’ provide a theoretical base for clinical ethics by focusing on human identities entangled in stories and on moral understanding as a dialogical process. Second, we consider the role of theoretical (...) notions in helping practitioners to understand their situation in clinical ethics practice, by using notions like ‘story’, ‘responsibility’, or ‘vulnerability’ to make explicit and explain their practical experience. Such theoretical notions help us to interpret clinical situations from an ethical perspective and to foster moral awareness of practitioners. And, thirdly, we examine how new theoretical concepts are developed by interpreting practice, using practice to form and improve our ethical theory. In this paper, we discuss this threefold use of theory in clinical ethics support services by reflecting on our own theoretical assumptions, methodological steps and practical experiences as ethicists, and by providing examples from our daily work. In doing so, we illustrate that theory and practice are interwoven, as theoretical understanding is dependent upon practical experience, and vice-versa. (shrink)

Ethics training has become a common phenomenon in the training of military professionals at all levels. However, the perceived outcomes of this training remain open. In this article, we analyze the experiences of course participants who were interviewed 6–12 months after they had participated in a train-the-trainer course in military ethics developed by the Faculty of Military Sciences of the Netherlands Defence Academy. Through qualitative inductive analysis, it is shown how participants evaluate the training, how they perceive the development of (...) their moral competence, and how they see the impact of the training on their own training practice. (shrink)

Volume 19, Issue 11, November 2019, Page 71-73.

On one view, limb transplants cross technological frontiers but not ethical ones; the only issues to be resolved concern professional competence, under the assumption of patient autonomy. Given that the benefits of limb transplant do not outweigh the risks, however, the autonomy and rationality of the patient are not necessarily self‐evident. In addition to questions of resource allocation and informed consent, limb, and particularly hand, allograft also raises important issues of personal identity and bodily integrity. We present two linked schemas (...) for exploring ethical issues in limb transplants. The first, relying on conventional concepts in biomedical ethics, asks whether the procedure is research or therapy, whether the costs outweigh the benefits, and whether it should be up to the patient to decide. The second introduces more speculative and theoretically challenging questions, including bodily integrity, the argument from unnaturalness, and the function of the hand in expressing personal identity and intimacy. We conclude that limb transplants are not ruled out a priori, unlike some procedures that are prima facie wrong to perform, such as amputation of healthy limbs to relieve body dysmorphic disorders. However, their legitimacy is not proven by appeals to the interests of scientific research, cost‐benefit, or patient autonomy. (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)

Clinical ethics support for health care professionals and patients is increasingly seen as part of good health care. However, there is a key drawback to the way CES services are currently offered. They are often performed as isolated and one-off services whose ownership and impact are unclear. This paper describes the development of an integrative approach to CES at the Center of Expertise and Care for Gender Dysphoria at Amsterdam University Medical Center. We specifically aimed to integrate CES into daily (...) work processes at the CEGD. In this paper, we describe the CES services offered there in detail and elaborate on the 16 lessons we learned from the process of developing an integrative approach to CES. These learning points can inform and inspire CES professionals, who wish to bring about greater integration of CES services into clinical practice. (shrink)

Florijn analyzes the ruling of the Court of Appeal in the Heringa case, focusing on the role of patient autonomy in physician assisted death (Florijn 2022). His analysis of the case shows that in Dutch euthanasia law patient autonomy as self-determination is limited by the reciprocal physician-patient relationship. Yet, it also gives an unbalanced view of the Dutch euthanasia regulation and its ethical foundation. By focusing on patient autonomy, the importance of unbearable and irremediable suffering as a prerequisite for euthanasia (...) becomes less visible. The requirement of irremediable suffering means that only a physician is allowed to perform euthanasia, since medical expertise is needed to establish whether there are still treatment options to alleviate suffering. We will discuss the importance of suffering, and its consequences for the “tired of life” debate. (shrink)

Introduction With an ageing population, end-of-life care is increasing in importance. The present work investigated characteristics and time trends of older peoples' attitudes towards euthanasia and an end-of-life pill. Methods Three samples aged 64 years or older from the Longitudinal Ageing Study Amsterdam (N=1284 (2001), N=1303 (2005) and N=1245 (2008)) were studied. Respondents were asked whether they could imagine requesting their physician to end their life (euthanasia), or imagine asking for a pill to end their life if they became tired (...) of living in the absence of a severe disease (end-of-life pill). Using logistic multivariable techniques, changes of attitudes over time and their association with demographic and health characteristics were assessed. Results The proportion of respondents with a positive attitude somewhat increased over time, but significantly only among the 64–74 age group. For euthanasia, these percentages were 58% (2001), 64% (2005) and 70% (2008) (OR of most recent versus earliest period (95% CI): 1.30 (1.17 to 1.44)). For an end-of-life pill, these percentages were 31% (2001), 33% (2005) and 45% (2008) (OR (95% CI): 1.37 (1.23 to 1.52)). For the end-of-life pill, interaction between the most recent time period and age group was significant. Conclusions An increasing proportion of older people reported that they could imagine desiring euthanasia or an end-of-life pill. This may imply an increased interest in deciding about your own life and stresses the importance to take older peoples' wishes seriously. (shrink)

BackgroundThere is increasing evidence that research misbehaviour is common, especially the minor forms. Previous studies on research misbehaviour primarily focused on biomedical and social sciences, and evidence from natural sciences and humanities is scarce. We investigated what academic researchers in Amsterdam perceived to be detrimental research misbehaviours in their respective disciplinary fields.MethodsWe used an explanatory sequential mixed methods design. First, survey participants from four disciplinary fields rated perceived frequency and impact of research misbehaviours from a list of 60. We then (...) combined these into a top five ranking of most detrimental research misbehaviours at the aggregate level, stratified by disciplinary field. Second, in focus group interviews, participants from each academic rank and disciplinary field were asked to reflect on the most relevant research misbehaviours for their disciplinary field. We used participative ranking methodology inducing participants to obtain consensus on which research misbehaviours are most detrimental.ResultsIn total, 1080 researchers completed the survey and 61 participated in the focus groups. Insufficient supervision consistently ranked highest in the survey regardless of disciplinary field and the focus groups confirmed this. Important themes in the focus groups were insufficient supervision, sloppy science, and sloppy peer review. Biomedical researchers and social science researchers were primarily concerned with sloppy science and insufficient supervision. Natural sciences and humanities researchers discussed sloppy reviewing and theft of ideas by reviewers, a form of plagiarism. Focus group participants further provided examples of particular research misbehaviours they were confronted with and how these impacted their work as a researcher.ConclusionWe found insufficient supervision and various forms of sloppy science to score highly on aggregate detrimental impact throughout all disciplinary fields. Researchers from the natural sciences and humanities also perceived nepotism to be of major impact on the aggregate level. The natural sciences regarded fabrication of data of major impact as well. The focus group interviews helped to understand how researchers interpreted ‘insufficient supervision’. Besides, the focus group participants added insight into sloppy science in practice. Researchers from the natural sciences and humanities added new research misbehaviours concerning their disciplinary fields to the list, such as the stealing of ideas before publication. This improves our understanding of research misbehaviour beyond the social and biomedical fields. (shrink)

Volume 20, Issue 8, August 2020, Page 104-106.

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)

In healthcare practice, care providers are confronted with tragic situations, in which they are expected to make choices and decisions that can have far-reaching consequences. This article investigates the role of moral case deliberation in dealing with tragic situations. It focuses on experiences of care givers involved in the treatment of a pregnant woman with a brain tumour, and their evaluation of a series of MCD meetings in which the dilemmas around care were discussed. The study was qualitative, focusing on (...) the views and experiences of the participants. A case study design is used by conducting semi-structured interviews with health care professionals who both played a role in the treatment of the patient and attended the MCD. The results show that MCD helps people to deal with tragic situations. An important element of MCD in this respect is making explicit the dilemma and the damage, demonstrating that there is no simple solution. MCD prompts participants to formulate and share personal experiences with one another and thus helps to create a shared perception of the situation as tragic. The article concludes that MCD contributes to the sharing of tragic experiences, and fosters mutual interaction during a tragedy. Its value could be increased through explicit reflection on the aspect of contingency that characterises tragedy. (shrink)

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of (...) the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline. (shrink)

The prevalence of Clinical ethics support services is increasing. Yet, questions about what quality of CES entails and how to foster the quality of CES remain. This paper describes the development of a national network, which aimed to conceptualize and foster the quality of CES in the Netherlands simultaneously. Our methodology was inspired by a responsive evaluation approach which shares some of our key theoretical presuppositions of CES. A responsive evaluation methodology engages stakeholders in developing quality standards of a certain (...) practice, instead of evaluating a practice by predefined standards. In this paper, we describe the relationship between our theoretical viewpoint on CES and a responsive evaluation methodology. Then we describe the development of the network and focus on three activities that exemplify our approach. In the discussion, we reflect on the similarities and differences between our approach and other international initiatives focusing on the quality of CES. (shrink)

Volume 20, Issue 6, June 2020, Page 70-72.