Systematic ethics support in community health services in Norway is in the initial phase. There are few evaluation studies about the significance of ethics reflection on care. The aim of this study was to evaluate systematic ethics reflection in groups in community health , - from the perspectives of employees participating in the groups, the group facilitators and the service managers. The reflection groups were implemented as part of a research and development project.

A systematic literature review on evaluation of clinical ethics support services in mental healthcare is presented and discussed. The focus was on (a) forms of clinical ethics support services, (b) evaluation of clinical ethics support services, (c) contexts and participants and (d) results. Five studies were included. The ethics support activities described were moral case deliberations and ethics rounds. Different qualitative and quantitative research methods were utilized. The results show that (a) participants felt that they gained an increased insight into (...) moral issues through systematic reflection; (b) there was improved cooperation among multidisciplinary team members; (c) it was uncertain whether clinical ethics support services led to better patient care; (d) the issue of patient and client participation is complex; and (e) the implementation process is challenging. Clinical ethics support services have mainly been studied through the experiences of the participating facilitators and healthcare professionals. Hence, there is limited knowledge of whether and how various types of clinical ethics support services influence the quality of care and how patients and relatives may evaluate clinical ethics support services. Based on the six excluded ‘grey zone articles’, in which there was an implicit focus on ethics reflection, other ways of working with ethical reflection in practice are discussed. Implementing and evaluating clinical ethics support services as approaches to clinical ethics support that are more integrated into the development of good practice are in focus. In order to meet some of the shortcomings of the field of clinical ethics support services, a research project that aims to strengthen ethics support in the mental health services, including patients’ and caregivers’ views on ethical challenges, is presented. (shrink)

The past few years have seen greater attention directed toward important procedural elements associated with ethics consultation. Examples include considerations about how best to document consulta...

Objective: To evaluate one ethics rounds model by describing nurses’ and doctors’ experiences of the rounds. Methods: Philosopher-ethicist-led interprofessional team ethics rounds concerning dialysis patient care problems were applied at three Swedish hospitals. The philosophers were instructed to promote mutual understanding and stimulate ethical reflection, without giving any recommendations or solutions. Interviews with seven doctors and 11 nurses were conducted regarding their experiences from the rounds, which were then analysed using content analysis. Findings: The goal of the rounds was partly (...) fulfilled. Participants described both positive and negative experiences. Good rounds included stimulation to broadened thinking, a sense of connecting, strengthened confidence to act, insight into moral responsibility and emotional relief. Negative experiences were associated with a sense of unconcern and alienation, as well as frustration with the lack of solutions and a sense of resignation that change is not possible. The findings suggest that the ethics rounds above all met the need of a forum for crossing over professional boundaries. The philosophers seemed to play an important role in structuring and stimulating reasoned arguments. The nurses’ expectation that solutions to the ethical problems would be sought despite explicit instructions to the contrary was conspicuous. Conclusion: When assisting healthcare professionals to learn a way through ethical problems in patient care, a balance should be found between ethical analyses, conflict resolution and problem solving. A model based on the findings is presented. (shrink)

The objective of this article is to analyse and compare four methods of ethical case deliberation. These include Clinical Pragmatism, The Nijmegen Method of ethical case deliberation, Hermeneutic dialogue, and Socratic dialogue. The origin of each method will be briefly sketched. Furthermore, the methods as well as the related protocols will be presented. Each method will then be evaluated against the background of those situations in which it is being used. The article aims to show that there is not one (...) ideal method of ethical case deliberation, which fits to all possible kinds of moral problems. Rather, as each of the methods highlights a limited number of morally relevant aspects, each method has its strengths and weaknesses as well. These strengths and weaknesses should be evaluated in relation to different types of situations, for instance moral problems in treatment decisions, moral uneasiness and residue, and the like. The suggestion arrived at on the basis of the findings of this paper is a reasonable methodological plurality. This means that a method can be chosen depending on the type of moral problem to be deliberated upon. At the same time it means, that by means of a method, deliberation should be facilitated. (shrink)

Background Confidentiality is one of the central preconditions for clinical ethics support (CES). CES cases which generate moral questions for CES staff concerning (breaching) confidentiality of what has been discussed during CES can cause moral challenges. Currently, there seems to be no clear policy or guidance regarding how CES staff can or should deal with these moral challenges related to (not) breaching confidentiality within CES. Moral case deliberation is a specific kind of CES. Method Based on experiences and research into (...) MCD facilitators’ needs for ethics support in this regard, we jointly developed an ethics support tool for MCD facilitators: the Confidentiality Compass. This paper describes the iterative developmental process, including our theoretical viewpoints and reflections on characteristics of CES tools in general. Results The content and goals of the ethics support tool, which contains four elements, is described. Part A is about providing information on the concept of confidentiality in MCD, part B is a moral compass with reflective questions, part C focuses on courses of action for careful handling of moral challenges related to confidentiality. Part D contains general lessons, best practices and tips for dealing with confidentiality in future cases. Conclusions This paper concludes with providing some lessons-learned related to developing ethics support tools and some reflections on issues of quality and normativity of ethics support tools. (shrink)

Patients in a vegetative state/ unresponsive wakefulness syndrome (VS/UWS) pose ethical dilemmas to those involved. Many conflicts occur between professionals and families of these patients. In the Netherlands physicians are supposed to withdraw life sustaining treatment once recovery is not to be expected. Yet these patients have shown to survive sometimes for decades. The role of the families is thought to be important. The aim of this study was to make an inventory of the professional perspective on conflicts in long-term (...) care of patients in VS/UWS. A qualitative study of transcripts on 2 Moral Deliberations (MD’s) in 2 cases of patients in VS/UWS in long-term care facilities. Six themes emerged: 1) Vision on VS/UWS; 2) Treatment and care plan; 3) Impact on relationships; 4) Feelings/attitude; 5) Communication; 6) Organizational aspects. These themes are related to professionals and to what families had expressed to the professionals. We found conflicts as well as contradictory feelings and thoughts to be a general feature in 4 of these themes, both in professionals and families. Conflicts were found in several actors: within families concerning all 6 themes, in nurse teams concerning the theme treatment and care plan, and between physicians concerning all 6 themes. Different visions, different expectations and hope on recovery, deviating goals and contradictory feelings/thoughts in families and professionals can lead to conflicts over a patient with VS/UWS. Key factors to prevent or solve such conflicts are a carefully established diagnosis, clarity upon visions, uniformity in treatment goals and plans, an open and empathic communication, expertise and understanding the importance of contradictory feelings/thoughts. Management should bridge conflicts and support their staff, by developing expertise, by creating stability and by facilitating medical ethical discourses. Shared compassion for the patient might be a key to gain trust and bridge the differences from non-shared to shared decision making. (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)

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

Bioethicists function in an environment in which their peers - healthcare executives, lawyers, nurses, physicians - assert the integrity of their fields through codes of professional ethics. Is it time for bioethics to assert its integrity by developing a code of ethics? Answering in the affirmative, this paper lays out a case by reviewing the historical nature and function of professional codes of ethics. Arguing that professional codes are aggregative enterprises growing in response to a field's historical experiences, it asserts (...) that bioethics now needs to assert its integrity and independence and has already developed a body of formal statements that could be aggregated to create a comprehensive code of ethics for bioethics. A Draft Model Aggregated Code of Ethics for Bioethicists is offered in the hope that analysis and criticism of this draft code will promote further discussion of the nature and content of a code of ethics for bioethicists. (shrink)

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)

Clinical ethics consultants occasionally encounter unethical and/or unprofessional behavior as part of their normal job functions. In this article, we explore whether resigning (i.e., threatening resignation or resigning) and whistleblowing are acceptable methods ethics consultants can use to address these situations. Per our analysis, whether one considers ethics consultants private or public employees, loyal to their employer or to patients, families, and the public, resigning and whistleblowing are all acceptable, if not obligatory, actions of ethics consultants in certain circumstances. In (...) this article, we analyze salient characteristics of ethics consultation as a profession as they pertain to resignation and whistleblowing in the context of ethics consultation. We also present tentative criteria for when ethics consultants are justified, if not obligated, to resign or blow the whistle. (shrink)

Background: Moral Case Deliberation is one form of clinical ethics support described as a facilitator-led collective moral reasoning by healthcare professionals on a concrete moral question connected to their practice. Evaluation research is needed, but, as human interaction is difficult to standardise, there is a need to capture the content beyond moral reasoning. This allows for a better understanding of Moral Case Deliberation, which may contribute to further development of valid outcome criteria and stimulate the normative discussion of what Moral (...) Case Deliberation should contain. Objective: To explore and compare the content beyond moral reasoning in the dialogue in Moral Case Deliberation at Swedish workplaces. Methods: A mixed-methods approach was applied for analysing audio-recordings of 70 periodic Moral Case Deliberation meetings at 10 Swedish workplaces. Moral Case Deliberation facilitators and various healthcare professions participated, with registered nurses comprising the majority. Ethical considerations: No objection to the study was made by an Ethical Review Board. After oral and written information was provided, consent to be recorded was assumed by virtue of participation. Findings: Other than ‘moral reasoning’ (median (md): 45% of the spoken time), the Moral Case Deliberations consisted of ‘reflections on the psychosocial work environment’ to a varying extent (md: 29%). Additional content comprised ‘assumptions about the patient’s psychosocial situation’ (md: 6%), ‘facts about the patient’s situation’ (md: 5%), ‘concrete problem-solving’ (md: 6%) and ‘process’ (md: 3%). Conclusion: The findings suggest that a restorative function of staff’s wellbeing in Moral Case Deliberation is needed, as this might contribute to good patient care. This supports outcome criteria of improved emotional support, which may include relief of moral distress. However, facilitators need a strategy for how to proceed from the participants’ own emotional needs and to develop the use of their emotional knowing to focus on the ethically difficult patient situation. (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)

From the beginning, a code of ethics for bioethicists has been conceived of as part of a movement to professionalise the field. In advocating for such a code, Baker repeatedly identifies ‘having a code of ethics’ with ‘professionalization’. The American Society of Bioethics and Humanities (ASBH) echoes this view in their code of ethics for healthcare ethics consultants (HCECs)1 and the subsequent publication in the American Journal of Bioethics.2 Taking for granted that a code of ethics could be a valuable (...) asset for HCECs, this essay has two aims. First, there are good reasons to doubt that the label ‘profession’ has significant meaning for HCECs. Attempts to accurately conceive of a profession fall into two broad camps: substantive and formal. Substantive conceptions should be rejected. Specifically, substantive conceptions beg the question about what it means to be a profession, which produces devastating problems for practical application. Formal conceptions of profession (eg, Davis’ conception3) avoid begging the question, but do so at the cost of identifying the responsibilities of a profession. Using the term ‘professional responsibilities’, then, requires additional explication and classifying HCECs as professionals requires the identification of their role-specific responsibilities.i Second, this essay will critique the ASBH code of ethics for HCECs as a first articulation of these responsibilities. As written, this code of ethics has limited value for HCECs because most of the responsibilities identified in this code do not identify HCEC-specific responsibilities. In closing, some important strategies to improve upon this initial attempt to define the responsibilities of HCECs are identified. For at least the last decade, Baker has encouraged bioethicists to adopt a code of ethics. Throughout this effort, Baker intertwines having a code of ethics with becoming a profession: ‘Is it time for bioethics to assert its integrity by developing …. (shrink)

This paper examines confidentiality and its nature and analyses the guidelines laid down by the Hippocratic Oath as well as the British and World Medical Associations for maintaining such confidentiality between doctor and patient. There are exceptions to practically any code of rules and this is true also for confidentiality. Some of these exceptions make it appear that very little is confidential. The three values implicit in confidentiality would seem to be privacy, confidence and secrecy. Each of these values is (...) discussed and developed in this paper. In conclusion, the question is suggested that maybe in the face of death, doctor and patient need to re-examine the pre-suppositions of privacy, confidence and secrecy on which the confidential relationship is based. (shrink)

Clinical ethics consultation, as an activity that may be provided by clinical ethics committees and consultants, is nowadays a well-established practice in North America. Although it has been increasingly implemented in Europe and elsewhere, no agreement can be found among scholars and practitioners on the appropriate role or approach the consultant should play when ethically problematic cases involving conflicts and uncertainties come up. In particular, there is no consensus on the acceptability of consultants making recommendations, offering moral advice upon request, (...) and expressing personal opinions. We translate these issues into the question of whether the consultant should be neutral when performing an ethics consultation. We argue that the notion of neutrality 1) functions as a hermeneutical key to review the history of CEC as a whole; 2) may be enlightened by a precise assessment of the nature and goals of CEC; 3) refers to the normative dimension of CEC. Here, we distinguish four different meanings of neutrality: a neutral stance toward the parties involved in clinical decision making, toward the arguments offered to frame the discussion, toward the values and norms involved in the case, and toward the outcome of decision making, that is to say the final decision and action that will be implemented. Lastly, we suggest a non-authoritarian way to intend the term “recommendation” in the context of clinical ethics consultation. (shrink)

This study describes which clinical ethics approaches are available to support healthcare personnel in clinical practice in terms of their construction, functions and goals. Healthcare personnel frequently face ethically difficult situations in the course of their work and these issues cover a wide range of areas from prenatal care to end-of-life care. Although various forms of clinical ethics support have been developed, to our knowledge there is a lack of review studies describing which ethics support approaches are available, how they (...) are constructed and their goals in supporting healthcare personnel in clinical practice. This study engages in an integrative literature review. We searched for peer-reviewed academic articles written in English between 2000 and 2016 using specific Mesh terms and manual keywords in CINAHL, MEDLINE and Psych INFO databases. In total, 54 articles worldwide described clinical ethics support approaches that include clinical ethics consultation, clinical ethics committees, moral case deliberation, ethics rounds, ethics discussion groups, and ethics reflection groups. Clinical ethics consultation and clinical ethics committees have various roles and functions in different countries. They can provide healthcare personnel with advice and recommendations regarding the best course of action. Moral case deliberation, ethics rounds, ethics discussion groups and ethics reflection groups support the idea that group reflection increases insight into ethical issues. Clinical ethics support in the form of a “bottom-up” perspective might give healthcare personnel opportunities to think and reflect more than a “top-down” perspective. A “bottom-up” approach leaves the healthcare personnel with the moral responsibility for their choice of action in clinical practice, while a “top-down” approach risks removing such moral responsibility. (shrink)

Clinical ethics consultants represent a multidisciplinary group of scholars and practitioners with varied training backgrounds, who are integrated into a medical environment to assist in the provision of ethically supportable care. Little has been written about the degree to which such consultants are accountable for the patient care outcome of the advice given. We propose a model for examining degrees of internally motivated accountability that range from restricted to unbounded accountability, and support balanced accountability as a goal for practice. Finally, (...) we explore implications of this model for training of clinical ethics consultants from diverse academic backgrounds, including those disciplines that do not have a formal code of ethics relating to clinical practice. (shrink)

1. The opinions expressed are those of the author and do not necessarily reflect the position or policy of the National Institutes of Health, the Public Health Service, or the Department of Health and Human Services.

In its original expression as a medical value confidentiality may have been absolute; this concept has become eroded by patient consent, legal actions and change in the climate of public opinion. In particular requirements arising out of legal statutes and common law judgements have greatly modified the confidentiality of the doctor-patient relationship in societies deriving their law from English origins. Despite this, confidentiality remains a value which the physician must strive to preserve. He cannot however do this without considering its (...) effect upon possible innocent third parties. (shrink)

Clinicians' work depends on sincere and complete disclosures from their patients; they honour this candidness by confidentially safeguarding the information received. Breaching confidentiality causes harms that are not commensurable with the possible benefits gained. Limitations or exceptions put on confidentiality would destroy it, for the confider would become suspicious and un-co-operative, the confidant would become untrustworthy and the whole climate of the clinical encounter would suffer irreversible erosion. Excusing breaches of confidence on grounds of superior moral values introduces arbitrariness and (...) ethical unreliability into the medical context. Physicians who breach the agreement of confidentiality are being unfair, thus opening the way for, and becoming vulnerable to, the morally obtuse conduct of others. Confidentiality should not be seen as the cosy but dispensable atmosphere of clinical settings; rather, it constitutes a guarantee of fairness in medical actions. Possible perils that might accrue to society are no greater than those accepted when granting inviolable custody of information to priests, lawyers and bankers. To jeopardize the integrity of confidential medical relationships is too high a price to pay for the hypothetical benefits this might bring to the prevailing social order. (shrink)

A traditional approach to teaching medical ethics aims to provide knowledge about ethics. This is in line with an epistemological view on ethics in which moral expertise is assumed to be located in theoretical knowledge and not in the moral experience of healthcare professionals. The aim of this paper is to present an alternative, contextual approach to teaching ethics, which is grounded in a pragmatic-hermeneutical and dialogical ethics. This approach is called moral case deliberation. Within moral case deliberation, healthcare professionals (...) bring in their actual moral questions during a structured dialogue. The ethicist facilitates the learning process by using various conversation methods in order to find answers to the case and to develop moral competencies. The case deliberations are not unique events, but are a structural part of the professional training on the work floor within healthcare institutions. This article presents the underlying theory on ethics and illustrates this approach with an example of a moral case deliberation project in a Dutch psychiatric hospital. The project was evaluated using the method of responsive evaluation. This method provided us with rich information about the implementation process and effects the research process itself also lent support to the process of implementation. (shrink)

Clinical ethics consultation not only interprets moral issues at the bedside and is not restricted to giving support for the “technical” handling of these moral issues, but it has to substantively address moral values, norms, and conflicts in the process of discussing cases and problems. We call this the normative dimension and use normative in the sense of embracing moral values and convictions of persons and groups, norms, and relevant professional and ethical guidelines as well as legal frameworks. The roles (...) and activities of the consultant as a person and the quality of CEC as a process are discussed in the American Society of Bioethics and Humanities’ Core Competences for Healthcare Ethics Consultation. (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)

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)

Several studies show that healthcare professionals need to communicate inter-professionally in order to manage ethical difficulties. A model of clinical ethics support inspired by Habermas’ theory of discourse ethics has been developed by our research group. In this version of CES sessions healthcare professionals meet inter-professionally to communicate and reflect on ethical difficulties in a cooperative manner with the aim of reaching communicative agreement or reflective consensus. In order to understand the course of action during CES, the aim of this (...) study was to describe the communication of value conflicts during a series of inter-professional CES sessions. Ten audio- and video-recorded CES sessions were conducted over eight months and were analyzed by using the video analysis tool Transana and qualitative content analysis. The results showed that during the CES sessions the professionals as a group moved through the following five phases: a value conflict expressed as feelings of frustration, sharing disempowerment and helplessness, the revelation of the value conflict, enhancing realistic expectations, seeing opportunities to change the situation instead of obstacles. In the course of CES, the professionals moved from an individual interpretation of the situation to a common, new understanding and then to a change in approach. An open and permissive communication climate meant that the professionals dared to expose themselves, share their feelings, face their own emotions, and eventually arrive at a mutual shared reality. The value conflict was not only revealed but also resolved. (shrink)

Clinical ethics consultants occasionally encounter unethical and/or unprofessional behavior as part of their normal job functions. In this article, we explore whether resigning (i.e., threatening resignation or resigning) and whistleblowing are acceptable methods ethics consultants can use to address these situations. Per our analysis, whether one considers ethics consultants private or public employees, loyal to their employer or to patients, families, and the public, resigning and whistleblowing are all acceptable, if not obligatory, actions of ethics consultants in certain circumstances. In (...) this article, we analyze salient characteristics of ethics consultation as a profession as they pertain to resignation and whistleblowing in the context of ethics consultation. We also present tentative criteria for when ethics consultants are justified, if not obligated, to resign or blow the whistle. (shrink)

BackgroundCommunity Advisory Boards (CAB) have become essential organs of involving communities in HIV clinical trials especially in developing countries. However, limited empirical evidence exists on the role of CABs in low and middle-income countries including Tanzania. This study aims at exploring the role of CABs in community-based HIV clinical trials conducted in Tanzania.MethodologyWe adopted a phenomenological approach to purposefully select HIV clinical trial stakeholders. These included CAB members, researchers and Institutional Review Board (IRB) members in Tanzania. We conducted In-depth Interviews (...) (IDIs) with ten participants and three Focus Group Discussions (FGDs) with eighteen participants. The data were thematically analyzed with the aid of MAXQDA software version 20.2.1.ResultsThe findings indicate that at every stage of implementation of a community-based HIV clinical trial, a functioning CAB is important for its success. This importance is based on contextualization of the informed consent process and protocol, managing rumours in the community, weighing trial risks and benefits, sensitizing the community, assisting participant recruitment, tracing and retention. However, being perceived as financial beneficiaries than community representatives emerged as a challenge to CAB members. ConclusionThe study empirically indicates the need for functioning CABs in every stage of implementation of community-based HIV clinical trials. The roles of which are interwoven in serving research goals and protecting the interests of the community and that of trial participants. (shrink)

Moral Case Deliberations are reflective dialogues with a group of participants on their own moral dilemmas. Although MCD is successful as clinical ethics support, it also has limitations. 1. Lessons learned from individual MCDs are not shared in order to be used in other contexts 2. Moral learning stays limited to the participants of the MCD; 3. MCD requires quite some organisational effort, 4. MCD deals with one individual concrete case. It does not address other, similar cases. These limitations warrant (...) research into complementary ways of providing CES to healthcare professionals. Our research objective was therefore to develop a low threshold CES tool based on a series of MCDs on autonomy in long-term care. We used a qualitative research design in which we analyzed the process and content of a series of MCDs, combined with reflections on the theoretical background of MCD. In total 28 MCDs were analyzed by means of a thematic content analysis. In various rounds of development, the results of the analysis were combined with theoretical reflections on CES. Consequently, the tool was evaluated in three focus groups and adjusted. The CES tool, called ‘moral compass’, guides the users through a series of six subsequent questions in order to methodically reflect on their concrete moral dilemma, in the form of a booklet of 23 pages. It combines a methodical element that encourages and structures a reflection process with a substantive element, including norms, values, options, strategies, and insights regarding dealing with client autonomy. By using data from a series of MCDs, combined with theoretical reflections on MCD, ethics support and moral learning, we developed a thematic, low-threshold CES tool that supports healthcare professionals in daily practice in dealing with moral questions regarding client autonomy. It integrates examples and insights from earlier MCDs on the same topic. The moral compass is not a replacement of, but can be used complementary to MCD. The feasibility and impact of the moral compass need to be investigated in an evaluative follow-up study. The methodology presented in this paper may be used to develop moral compasses on different topics in various healthcare organizations. (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)