Universities and other research institutions are increasingly providing additional training in research integrity to improve the quality and reliability of research. Various training courses have been developed, with diverse learning goals and content. Despite the importance of training that focuses on moral character and professional virtues, there remains a lack of training that adopts a virtue ethics approach. To address this, we, a European Commission-funded consortium, have designed a train-the-trainer programme for research integrity. The programme is based on (1) virtue (...) ethics, (2) the ethos of science, (3) learning by doing and (4) learner-centred teaching. The blended learning programme combines e-learning modules with participatory group sessions. Trainers are taught how to guide researchers through a series of structured exercises for fostering reflection on scientific virtues, and how to promote understanding and application of the European Code of Conduct for Research Integrity. Trainers are provided with adaptable tools and resources that can be used and combined in different ways. The programme implementation began in Spring 2020 and 470 trainers have participated to date. When trainers were asked to grade – between 0 (very bad) and 10 (excellent) – the e-learning modules and the participatory exercises, 60% scored a grade 8 or higher (median = 8, IQR = 2) for the e-learning modules, whereas 80% scored a grade 8 or higher (median = 9, IQR = 1) for the participatory exercises. A majority felt that the training helped them as a trainer to learn about ways to organise and teach a research integrity course (82%) and would recommend the interactive exercises to others (92%). Trainers have educated over 3300 researchers in Europe using our virtue-based approach. The VIRT2UE train-the-trainer programme fosters research integrity by providing trainers with exercises and tools which enable them to stimulate the development of good researchers across Europe. (shrink)

Moral 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...

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)

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)

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 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 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)

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)

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

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)

In recent years, facial difference is increasingly on the public and academic agenda. This is evidenced by the growing public presence of individuals with an atypical face, and the simultaneous emergence of research investigating the issues associated with facial variance. The scholarship on facial difference approaches this topic either through a medical and rehabilitation perspective, or a psycho-social one. However, having a different face also encompasses an embodied dimension. In this paper, we explore this embodied dimension by interpreting the stories (...) of individuals with facial limb absence against the background of phenomenological theories of the body, illness and disability. Our findings suggest that the atypical face disrupts these individuals’ engagement with everyday projects when it gives rise to disruptive perceptions, sensations, and observations. The face then ceases to be the absent background to perception, and becomes foregrounded in awareness. The disruptions evoked by facial difference call for adjustments: as they come to terms with their altered face, the participants in our study gradually develop various new bodily habits that re-establish their face’s absence, or relate to its disruptive presence. It is through these emergent habits that facial difference comes to be embodied. By analyzing the everyday experiences of individuals with facial limb absence, this article provides a much-needed exploration of the embodied aspects of facial difference. It also exemplifies how a phenomenological account of illness and disability can do justice both to the impairments and appearance issues associated with atypical embodiment. (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)

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

In 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)

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)

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)

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)

Prosthetic devices that replace an absent body part are generally considered to be either cosmetic or functional. Functional prostheses aim to restore (some degree of) lost physical functioning. Cosmetic prostheses attempt to restore a “normal” appearance to bodies that lack (one or more) limbs by emulating the absent body part’s looks. In this article, we investigate how cosmetic prostheses establish a normal appearance by drawing on the stories of the users of a specific type of artificial limb: the facial prosthesis. (...) Given that prostheses are first and foremost devices worn upon the body, such an analysis requires an understanding of the ways in which bodies and technologies interact. We thus interpret users’ stories by critically engaging with the work of disability researcher and Actor-Network theorist Myriam Winance, as well as with the postphenomenological scholarship of Don Ihde and Peter-Paul Verbeek. Using this framework, we explore users’ attempts to achieve a proper fit between their faces and their prostheses, the technological transparency such a fit enables, and the ways in which transparency mediates users’ everyday exchanges with others. We conclude that a normal appearance, when it is achieved by means of prosthetics, enables the device’s user to navigate a precarious social environment as they encounter and interact with others in public. (shrink)

In their contribution, Wiggins and Wilbanks (2019) discuss the rise of citizen science and elaborate on several ethical issues that go beyond standard approaches in research ethics. They rightly sa...

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)

BackgroundExisting clinical ethics support (CES) instruments are considered useful. However, users report obstacles in using them in daily practice. Including end users and other stakeholders in developing CES instruments might help to overcome these limitations. This study describes the development process of a new ethics support instrument called CURA, a low-threshold four-step instrument focused on nurses and nurse assistants working in palliative care. MethodWe used a participatory development design. We worked together with stakeholders in a Community of Practice throughout the (...) study. Potential end users (nurses and nurse assistants in palliative care) used CURA in several pilots and provided us with feedback which we used to improve CURA.ResultsWe distinguished three phases in the development process. Phase one, Identifying Needs, focused on identifying stakeholder and end user needs and preferences, learning from existing CES instruments, their development and evaluation, and identify gaps. Phase two, Development, focused on designing, developing, refining and tailoring the instrument on the basis of iterative co-creation. Phase three, Dissemination, focused on implementation and dissemination. The instrument, CURA, is a four-step low-threshold instrument that fosters ethical reflection.ConclusionsParticipatory development is a valuable approach for developing clinical ethics support instruments. Collaborating with end users and other stakeholders in our development study has helped to meet the needs and preferences of end users, to come up with strategies to refine the instrument in order to enhance its feasibility, and to overcome reported limitations of existing clinical ethics instruments. (shrink)

Moral Case Deliberation is intended to assist healthcare professionals faced with difficult dilemmas in their work. These are situations that involve emotions. During Moral Case Deliberation, participants are invited to reflect on moral views and deliberate on them. Emotions are not explicitly addressed. This article aims to elucidate the role of emotions in Moral Case Deliberation, by analysing experiences of Moral Case Deliberation facilitators. Our research shows the role of emotions varies according to the phase of the Moral Case Deliberation (...) process. One negative aspect of emotions is that they can obstruct the Moral Case Deliberation discussion or distract from the moral question. A positive aspect is that they bring the dilemma into sharper focus. Devoting attention to emotions can help to ensure that responsible decisions are made, while also increasing the moral resilience of participants. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Response to the CommentariesGuy A. M. Widdershoven (bio)Keywordscognitive psychology, Bolton and Hill, hermeneutics, Gadamer, theoretical and practical holism, trauma, PTSDIt is not easy to engender a dialogue between two theoretical traditions. At least three conditions have to be fulfilled before such a dialogue can get started. In the first place, there has to be a common interest. Secondly, there has to be a divergence of perspectives. Thirdly, both (...) parties have to be prepared to learn something from one another. In my paper I tried to clear the ground for a dialogue between cognitive psychology and hermeneutics. I argued that there is a common interest, the understanding of human action as a process of meaning-making. I also argued that cognitive psychology and hermeneutics are different, in that the first relates meaning to theoretical frameworks (sets of representations), whereas the second emphasizes that meaning is the result of practical engagement in an intersubjective world. Finally, I tried to create mutual openness by focusing on a concrete subject (PTSD), critically examining hermeneutic philosophy by applying it to a field in which cognitive psychology has proven to be fruitful, and challenging cognitive psychology by thematizing elements of truth that tend to be obliterated from a cognitive perspective.The possibility of a meaningful dialogue between cognitive psychology and hermeneutics can be put into question by criticizing any of the three presuppositions mentioned above. It may be doubted whether cognitive psychology and hermeneutics share a common interest. This doubt is formulated by McMillan, who argues that cognitive psychology aims to formulate explanatory theories, which have a predictive power, whereas hermeneutics seeks to explore the meaning of human behavior. It may also be doubted whether cognitive psychology and hermeneutics present different views on the nature of human action. This doubt is expressed by Warner, who questions the difference between following implicit rules and responding experientially to the world. Finally, it may be doubted whether it makes sense to aim at a merger of the perspectives of hermeneutics and cognitive psychology in the case of PTSD. This doubt is brought to the fore by Phillips, who claims that hermeneutics is superior to cognitive psychology in explaining meaning and mental disorder, and that both perspectives are in need of correction, since they underestimate the importance of affect and emotion.Let us first consider the argument of McMillan. He emphasizes the difference between cognitive psychology and hermeneutics, the one aiming at explanation and prediction, the other focusing on understanding and interpretation. Although explanation and understanding are considered as fundamentally different by many hermeneutic philosophers (including Gadamer), I doubt whether [End Page 267] the distinction can be applied to characterize the differences between cognitive psychology and hermeneutics in the way McMillan does. Insofar as cognitive psychology is interested in meaning, it is not an explanatory science in the strict sense. The intentional stance does not enable us to formulate strict laws about human behavior, comparable to the laws of nature. It involves the presupposition that behavior is meaningful, which implies that it can be understood as rule-governed instead of lawlike. Because they focus on meaning, cognitive psychology and hermeneutics are both interested in understanding, rather than in explanation.Following the distinction between three kinds of interpersonal understanding made by Gadamer, the cognitive psychologist does not refer to laws of human nature (as is done in the first kind of interpersonal understanding), but focuses on the unique motives of the other (which is characteristic of the second kind of interpersonal understanding). In contrast with the hermeneutic perspective, the interpretation of these motives is seen as a theoretical endeavor, which does not involve the researcher in a dialogue. Thus, the difference between cognitive psychology and hermeneutics is a difference between two kinds of interpretation, the one theoretical and distanciated, the other practical and engaged.According to McMillan, interpretation is incompatible with prediction. This is true if prediction is seen as the counterpart of explanation in terms of universal laws. Yet, this does not imply that in interpreting behavior one makes no inferences about the future. If one regards the other person’s behavior as meaningful, one assumes that it is part of a larger pattern, which has... (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)

Prosthetic devices that replace an absent body part are generally considered to be either cosmetic or functional. Functional prostheses aim to restore (some degree of) lost physical functioning. Cosmetic prostheses attempt to restore a “normal” appearance to bodies that lack (one or more) limbs by emulating the absent body part’s looks. In this article, we investigate how cosmetic prostheses establish a normal appearance by drawing on the stories of the users of a specific type of artificial limb: the facial prosthesis. (...) Given that prostheses are first and foremost devices worn upon the body, such an analysis requires an understanding of the ways in which bodies and technologies interact. We thus interpret users’ stories by critically engaging with the work of disability researcher and Actor-Network theorist Myriam Winance, as well as with the postphenomenological scholarship of Don Ihde and Peter-Paul Verbeek. Using this framework, we explore users’ attempts to achieve a proper fit between their faces and their prostheses, the technological transparency such a fit enables, and the ways in which transparency mediates users’ everyday exchanges with others. We conclude that a normal appearance, when it is achieved by means of prosthetics, enables the device’s user to navigate a precarious social environment as they encounter and interact with others in public. (shrink)

Although moral case deliberation (MCD) is evaluated positively as a form of clinical ethics support (CES), it has limitations. To address these limitations our research objective was to develop a thematic CES tool. In order to assess the philosophical characteristics of a CES tool based on MCDs, we drew on hermeneutic ethics and pragmatism. We distinguished four core characteristics of a CES tool: (a) focusing on an actual situation that is experienced as morally challenging by the user; (b) stimulating moral (...) inquiry into the moral concepts, questions and routines in the lived experience of the CES tool user; (c) stimulating moral learning by exploring other perspectives; and (d) incorporating contextual details. We provide an example of a CES tool developed for moral dilemmas over client autonomy. Our article ends with some reflections on the normativity of the CES tool, other application areas and the importance of evaluation studies of CES tools. (shrink)

Euthanasia and physician-assisted suicide are controversial issues in medical ethics and medical law. In the debate, several arguments against the moral acceptability and legal feasibility of active involvement of physicians in bringing about a patient’s death can be found.One argument refers back to the Ten Commandments: “Thou shall not kill”. Killing another human being is morally abject. According to the argument, this is certainly so for medical doctors, as can be seen in the Hippocratic Oath, which explicitly forbids abortion and (...) euthanasia. A less apodictic argument refers to the slippery slope: if euthanasia would be permitted, a downhill movement is set in motion. The end of this movement would be, on the one hand, that physicians will feel forced to assist people who ask for termination of life on whatever grounds. On the other hand, it might lead to a situation in which it becomes normal to kill people who are no longer useful for society.In the literature and in the public debate, there are also arguments in favour of euthanasia and physician-assisted suicide. One such argument invokes the right to die. According to this argument, decisions concerning life and death should be up to the individual who is concerned. In many countries, suicide is morally and legally accepted. If people are allowed to kill themselves, why should they be without rights when they are no longer able to perform the act themselves?In medical ethics and medical law, patient autonomy is a central pivot. Patients have the right to refuse treatment even if this leads to their death. Shouldn’t people also have the right to determine the moment of dying, if they are in a situation which is unbearable, and without prospect of improvement? Another argument focuses on the duty of the physician to alleviate pain and suffering. If there is no other option, the doctor, in fulfilling this duty, should be allowed to actively end the patient’s life. This argument is not based on autonomy, but on beneficence.The debate concerning euthanasia involves fundamentally different moral principles. This makes the debate interesting, if not central to medical ethics and medical law. Yet, the principles are normally presented in an abstract way. Discussants stick to very general ideas, which lack reference to specific social and historical conditions, and are not related to concrete experiences. To invoke the Ten Commandments, or plea for a right to die, implies the use of universal standards, which tend to be general and empty.From a philosophical perspective, this type of argumentation can be criticized. Following Aristotle, ethics should be based upon experience. Ethical knowledge requires participation in concrete practices. Central to ethics is a feeling for the concrete situation, which is always contingent and historical. From this perspective, it makes sense to consider how practitioners in specific situations deal with moral issues, for instance concerning euthanasia. What role do they give to notions such as autonomy and beneficence, how do they interpret them and apply them to the concrete situation?In this paper I will present the Dutch experience with euthanasia. I will focus upon the way in which during the past thirty years the arguments in favour of euthanasia have been developed, in interaction with euthanasia practice. I will show that patient autonomy has been a crucial pivot. Yet, the Dutch interpretation of autonomy is not purely liberal. It does not only involve rights, but also obligations. Next, I will make clear that the physician plays a central role, in that the moral and legal basis of euthanasia is a conflict of duties on the side of the physician.This brings in the issue of beneficence. Yet the Dutch interpretation of the duty to help is not simply paternalistic. In Dutch health care, the physician-patient relationship is based upon deliberation and mutual agreement. Therefore, my conclusion will be that the Dutch practice of euthanasia has a moral ground, which goes beyond the traditional opposition between autonomy and beneficence. (shrink)

Summary If action theory is to be relevant for the study of social phenomena, its scope has to be enlarged so as to include social structures. A hermeneutic theory of action, which draws on the thoughts of Gadamer, Merleau-Ponty, Ricoeur and Giddens, can meet this requirement. The hermeneutic concept of action, which emphasises the importance of tradition, style and rituals, demonstrates that action and structure presuppose and explain each other. The mutual relationship between action and structure is particularly clear in (...) theories of human development in the domain of psychology, psychotherapy and education. These theories can be used to construct a theory of social evolution, as has been developed by Habermas. By integrating structural, theoretical and critical points of view, a hermeneutic theory of action opens a perspective in which action theory and social theory might be successfully combined. (shrink)

If action theory is to be relevant for the study of social phenomena, its scope has to be enlarged so as to include social structures. A hermeneutic theory of action, which draws on the thoughts of Gadamer, Merleau-Ponty, Ricoeur and Giddens, can meet this requirement. The hermeneutic concept of action, which emphasises the importance of tradition, style and rituals, demonstrates that action and structure presuppose and explain each other. The mutual relationship between action and structure is particularly clear in theories (...) of human development in the domain of psychology, psychotherapy and education. These theories can be used to construct a theory of social evolution, as has been developed by Habermas. By integrating structural, theoretical and critical points of view, a hermeneutic theory of action opens a perspective in which action theory and social theory might be successfully combined. (shrink)

In this chapter we reflect on the relevance of peer review for assessing the quality of clinical ethics consultation. We contend that peer review in the narrative form as presented in this book provides an alternative to the formal clinical ethics consultation review procedures typically found in the clinical ethics literature. We elaborate on peer review as a reflection on clinical ethics consultation practice, the elements which a story should contain in order to provide a basis for peer review, and (...) the differences between the assessments of the peer reviewers. We argue that a narrative approach to assessing the quality of ethics consultation can be further developed by allowing all stakeholders who are involved in the clinical ethics practice to actively take part in the evaluation process, following a “responsive evaluation” approach. An example of this is creating a Community of Practice, the aim of which is to foster a joint learning process of all parties involved. At the end of this chapter, we draw conclusions on peer review as a dialogical tool for evaluating quality of clinical ethics consultation. (shrink)

Being attentive to the needs of others, feeling responsible for each other, and taking care are necessary elements for the good life. Care, however, is a fragile activity: it is hard to predict its results. In this article, Homer's story of the Phaeacians bringing Odysseus back to Ithaca is interpreted to investigate what care could be when we admit the fragility of care. We consider two theoretical perspectives on care to interpret the story, namely Martha Nussbaum’s Aristotelian ethics, and the (...) Ethics of Care approach of authors like Ruddick, Sevenhuijsen, Tronto, Verkerk and others. In the first approach, the emphasis is on the attitude of care; in the second, on care as a social practice. Following Nussbaum, the caring response of the Phaeacians can be understood as an example of what Aristotle called ‘practical rationality’. The unexpected result of their care – they come into conflict with Poseidon – shows the fragility of human life and the tragic condition of humanity. According to Nussbaum, one should take responsibility for the fact that choosing for the one implies neglecting the other . From the perspective of Ethics of Care, the caring response is not so much the result of individual virtues; it is rather an element of a care practice that motivates people to act in conformity with basic values like solidarity and responsibility. The fragility of care is regarded as an ordinary quality of praxis and humanity rather than something essentially tragic. In the process of caring, misfortunes can never be totally prevented. Whenever they happen, they should be used as a way to learn and develop more adequate ways of handling the situation. The comparison of the two perspectives, both inspired by Aristotle's philosophy, gives rise to a richer view of the fragility of care. (shrink)

Forensic psychiatry is pervaded by moral dilemmas. Although professionals in forensic psychiatry are trained in law and psychiatry and are certainly aware of ethical issues in the care for patients, they tend to make decisions in an implicit way and not to discuss their moral concerns or doubts. More structural attention for ethics seems to be required. In this paper, we show the value of moral case deliberation in forensic psychiatry. Moral case deliberation is a specific kind of clinical ethics (...) support in which healthcare professionals discuss a moral issue from practice in a structured way, facilitated by an ethicist or specifically trained facilitator. It is applicable to a wide array of situations in healthcare practice. In contrast to other models of clinical ethics support, such as individual consultation, the focus is on the moral experience of professionals and using a structured method to foster dialog and joint moral learning. In this paper, an example of case on a forensic ward is presented. The case shows that moral case deliberation leads to reflection on values and stimulates openness and honesty regarding uncertainties. Moreover, the deliberation provides room for new insights and creates a basis for a joint decision on how to proceed further, recognizing the tensions and difficulties involved. (shrink)

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)

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)

In this article, we argue that a critical examination of epistemological and anthropological presuppositions might lead to a more fruitful use of theory in clinical-ethical practice. We differentiate between two views of conceptualizing ethics, referring to Charles Taylors' two epistemological models: ‘monological’ versus ‘dialogical consciousness’. We show that the conception of ethics in the model of ‘dialogical consciousness’ is radically different from the classical understanding of ethics in the model of ‘monological consciousness’. To reach accountable moral judgments, ethics cannot be (...) conceptualized as an individual enterprise, but has to be seen as a practical endeavor embedded in social interactions within which moral understandings are being negotiated. This view has specific implications for the nature and the role of ethical theory. Theory is not created in the individual mind of the ethicist; the use of theory is part of a joint learning process and embedded in a cultural context and social history. Theory is based upon practice, and serves practical purposes. Thus, clinical ethics support is both practical and theoretical. (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)

In this paper, we explore the desires that play a role at the palliative stage and relate them to various approaches to patient autonomy. What attitude can physicians and other caregivers take to the desires of patients at the palliative stage? We examine this question by introducing five physicians who are consulted by Jackie, an imaginary patient with metastatic lung carcinoma. By combining the models of the physician-patient relationship developed by Emanuel and Emanuel (1992) and the Hellenistic approaches to desires (...) analyzed by Nussbaum (1994), five different ways of dealing with desires in the context of palliative care are sketched. The story of Jackie shows that desires are to a certain extent responsive to reasoning. In the palliative process, that can be a reason to devote attention to the desires of patients and caregivers and to determine which desires need to be fulfilled, which are less important, and how they are linked to emotions the patient has. (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)

Based on our empirical research on global meaning in people with spinal cord injury and people with stroke, we formulated ‘inner posture’ as a concept in rehabilitation. Inner posture, as we concluded from our empirical data, refers to the way in which people bear what cannot be changed. It helps them to live with their injury. Considering that much has already been written about meaning from a variety of disciplines, the question arises whether the concept of inner posture adds something (...) new to the existing literature, or is just another name for a phenomenon that has already been described before in different terms. In this paper, we aim to investigate this and to clarify our conceptualization, by comparing the concept of inner posture with influential concepts in healthcare literature which seem to be more or less related. In the work of Puchalski regarding spirituality, Pargament regarding religion, Eliott regarding hope and Frankl regarding attitude, we found definitions and descriptions that seemed to come close to the phenomenon we refer to as inner posture. Because these concepts have various theoretical backgrounds, the comparison can help to better understand our concept of inner posture, through a process of dialogue between traditions, following Gadamer’s notion of dialogue as fusion of horizons of understanding. We conclude that inner posture differs from the other concepts in several ways. Some of these differences are more fundamental, other are partial. This suggests that we identified a new perspective on a phenomenon partially described earlier. The comparison also inspired us to slightly adjust our definition and to formulate new research questions. (shrink)

Working as clinical ethicists in an academic hospital, we find that practitioners tend to take a principle‐based approach to moral dilemmas when it comes to (not) treating patients who feel like a burden, in which respect for autonomy tends to trump other principles. We argue that this approach insufficiently deals with the moral doubts of professionals with regard to feeling that you are a burden as a motive to decline or withdraw from treatment. Neither does it take into adequately account (...) the specific needs of the patient that might underlie their feeling of being a burden to others. We propose a care ethics approach as an alternative. It focuses on being attentive and responsive to the caring needs of those involved in the care process—which can be much more specific than either receiving or withdrawing from treatment. This approach considers these needs in the context of the patient's identity, biography and relationships, and regards autonomy as relational rather than as individual. We illustrate the difference between these two approaches by means of the case of Mrs K. Furthermore, we show that a care ethics approach is in line with interventions that are found to alleviate feeling a burden and maintain that facilitating moral case deliberation among practitioners can supports them in taking a care ethics approach to moral dilemmas in (not) treating patients who feel like a burden. (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)

Predictive genetic testing may confront those affected with difficult life situations that they have not experienced before. These life situations may be interpreted as ‘absurd’. In this paper we present a case study of a predictive test situation, showing the perspective of a woman going through the process of deciding for or against taking the test, and struggling with feelings of alienation. To interpret her experiences, we refer to the concept of absurdity, developed by the French Philosopher Albert Camus. Camus' (...) writings on absurdity appear to resonate with patients' stories when they talk about their body and experiences of illness. In this paper we draw on Camus' philosophical essay ‘The Myth of Sisyphus’, and compare the absurd experiences of Sisyphus with the interviewee's story. This comparison opens up a field of ethical reflection. We demonstrate that Camus' concept of absurdity offers a new and promising approach to understanding the fragility of patients' situations, especially in the field of predictive testing. We show that people affected might find new meaning through narratives that help them to reconstruct the absurd without totally overcoming it. In conclusion, we will draw out some normative consequences of our narrative approach. (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)

We congratulate Pearlman and colleagues (2016) on their detailed account of the development of a quality assessment tool for clinical ethics consultation (CEC), based on the evaluation of written r...

Competence is central to informed consent and, therefore, to medical practice. In this context, competence is regarded as synonymous with decision-making capacity. There is wide consensus that competence should be approached conceptually by identifying the abilities needed for decision-making capacity. Incompetence, then, is understood as a condition in which certain abilities relevant to decision-making capacity are lacking. This approach has been helpful both in theory and practice. There is, however, another approach to incompetence, namely to relate it to mental disorder. (...) This approach has been followed in recent research that has shown, for instance, that in anorexia nervosa a person's values may be changed, resulting in ‘pathological’ values. We explore some advantages and disadvantages of both abilities-based and pathology-based approaches. We argue that both can be valuable for further clarification of the concept of competence and improving clinical practice. Given the current predominance of the abilities-based approach, we make a plea for a greater focus on pathology-based practice and research. (shrink)