What does coercion in intensive care mean for patients and their relatives? A thematic qualitative study.

BACKGROUND: The need for an ethical debate about the use of coercion in intensive care units (ICU) may not be as obvious as in other areas of medicine, such as psychiatry. Coercive measures are often necessary to treat critically ill patients in the ICU. It is nevertheless important to keep these measures to a minimum in order to respect the dignity of patients and the cohesion of the clinical team. A deeper understanding of what patients and their relatives perceive during their ICU stay will shed different light on intensive care management. Patients' experiences of loss of control, dependency and abandonment may lead to a new approach towards a broader approach to the concept of coercion in intensive care. The aim of our research is to explore the experiences of patients and relatives in the ICU and to determine when it might be possible to reduce feelings and memories of coercion. METHODS: We conducted and analysed 29 semi-structured interviews with patients and relatives who had been in the ICU a few months previously. Following a coding and categorisation process in MAXQDA™, a rigorous qualitative methodology was used to identify themes relevant to our research. RESULTS: Five main themes emerged: memory issues; interviewees' experiences of restricting measures and coercive treatment; patients' negative perception of situational and relational dependency with the risk of informal coercion; patients' perceptions of good care in a context of perceived dependency; progression from perception of coercion and dependency to respect for the person. All patients were grateful to have survived. However, coercion in the form of restraint, restriction of movement, and coercive treatment in the ICU was also acknowledged by patients and relatives. These included elements of informal coercion beyond restraints, such as a perceived negative sense of dependence, surrender, and asymmetrical interaction between the patient and health providers. CONCLUSIONS: To capture the full range of patients' experiences of coercion, it is necessary to expand the concept of coercion to include less obvious forms of informal coercion that may occur in dependency situations. This will help identify solutions to avoid or reduce negative recollections that may persist long after discharge and negatively affect the patients' quality of life.

Ethics, health policy-making and the economic crisis: a qualitative interview study with European policy-makers.

BACKGROUND: The economic crisis posed various challenges to policy-makers who had to decide on which health policy measures to focus on and on which to refrain from. The aim of this research was to assess the relevance of ethics and to highlight ethical dimensions in decision-taking by policy-makers with regard to policy and priority-setting in health systems posed by the economic crisis. METHODS: Semi-structured qualitative interviews were conducted with eight European policy-makers from six countries. RESULTS: All interviewees recalled difficult and strenuous situations where they had to prioritise between distinct areas to focus on and invest in, for example around choices between prioritising medications, health professional staffing, care specific equipment, or urgent infrastructure issues. Values could be identified which they deemed as important within the policy-making process, such as trust and responsibility. They explicitly expressed the need for ethical tools and assistance in terms of policy advice for reaching morally sustainable decisions in health policy matters. CONCLUSIONS: The study showed that ethical concepts and values frequently come into play in health policy-making, and that ethics is highly relevant in policy-makers' daily decision-taking, yet that they lack ethical guidance on what to base their decisions. The study is of relevance since it can provide future decisions on austerity-related issues with an ethical underpinning and could identify areas of moral concern.

"If an acute event occurs, what should we do?" Diverse ethical approaches to decision-making in the ICU.

The aim of this paper is to analyze an Intensive Care Unit case that required ethics consultation at a University Hospital in Northern Italy. After the case was resolved, a retrospective ethical analysis was performed by four clinical ethicists who work in different healthcare contexts (Italy, the United States, and Switzerland). Each ethicist used a different method to analyze the case; the four general approaches provide insight into how these ethicists conduct ethics consultations at their respective hospitals. Concluding remarks examine the similarities and differences among the various approaches and offer a reflection concerning the possibility of a shared resolution to the case. The authors' efforts to come to a tentative consensus may serve as an example for professionals working in medical contexts that reflect an increasing pluralism of values. This article aims to respond to some of these concerns by illustrating how different methods in clinical ethics would be used when considering a real case. The goal is not to establish the best model (if there is one) on a theoretical level, but to learn from actual practice in order to see if there are common elements in the different methods, and to validate their pertinence to clinical ethics consultation.

A pragmatist approach to clinical ethics support: overcoming the perils of ethical pluralism.

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

Evaluating Clinical Ethics Support: A Participatory Approach.

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 (CESS) 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 (1) the concrete contexts in which CESS takes place, (2) reflective and dialogical learning processes, and (3) 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.

Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources.

Research ethics anew gained importance due to the changing scientific landscape and increasing demands and competition in the academic field. These changes are further exaggerated because of scarce(r) resources in some countries on the one hand and advances in genomics on the other. In this paper, we will highlight the current challenges thereof to scientific integrity. To mark key developments in research ethics, we will distinguish between what we call research ethics 1.0 and research ethics 2.0. Whereas research ethics 1.0 focuses on individual integrity and informed consent, research ethics 2.0 entails social scientific integrity within a broader perspective of a research network. This research network can be regarded as a network of responsibilities in which every stakeholder involved has to jointly meet the ethical challenges posed to research.

Ethical procedures and patient consent differ in Europe.

BACKGROUND: Research ethics approvals, procedures and requirements for institutional research ethics committees vary considerably by country and by type of organisation. OBJECTIVE: To evaluate the requirements and procedures of research ethics committees, details of patient information and informed consent based on a multicentre European trial. DESIGN: Survey of European hospitals participating in the prospective observational study on chronic postsurgical pain (euCPSP) using electronic questionnaires. SETTING: Twenty-four hospitals in 11 European countries. PARTICIPANTS: From the 24 hospitals, 23 local investigators responded; 23 answers were analysed. OUTCOME MEASURES: Comparison of research ethics procedures and committee requirements from the perspective of clinical researchers. Comparison of the institutions' procedures regarding patient information and consent. Description of further details such as costs and the duration of the approval process. RESULTS: The approval process lasted from less than 2 weeks up to more than 2 months with financial fees varying between 0 and 575 &OV0556;. In 20 hospitals, a patient information sheet of variable length (half page up to two pages) was provided. Requirements for patients' informed consent differed. Written informed consent was mandatory at 12, oral at 10 and no form of consent at one hospital. Details such as enough time for consideration, possibility for withdrawal and risks/benefits of participation were provided in 25 to 30% of the institutions. CONCLUSION: There is a considerable variation in the administrative requirements for approval procedures by research ethics committees in Europe. This results in variation of the extent of information and consent procedures for the patients involved. TRIAL REGISTRATION: euCPSP in Clinicaltrials.gov identifier: NCT01467102; PAIN-OUT in Clinicaltrials.gov identifier: NCT02083835.

[Moral case deliberation about coercion in psychiatry. Dilemmas, value and implementation]. / Ethische Fall-Deliberation zu Freiheitseinschränkungen in der Psychiatrie. Dilemmata, Nutzen und Implementierung.

OBJECTIVE: To identify moral dilemmas regarding coercion and restraint among professionals working at a psychiatric ward, to get insight in the value of Moral Case Deliberation meetings about these dilemmas, and in the implementation of such meetings. METHODS: Qualitative explorative study with interviews, focus group and participant observation. RESULTS: Professionals experience dilemmas related to closing the ward (freedom versus safety), coercive treatment (freedom versus health), and camera surveillance (privacy versus safety). The introduction of Moral Case Deliberation contributes to changes concerning quality of treatment, professionalism of healthcare providers, and cooperation in the treatment team. The implementation of Moral Case Deliberation depends on an atmosphere of trust, expertise of the facilitator, and active involvement of a local coordinator. Bottlenecks for implementation include the availability of physicians, time-pressure and intervals between meetings. CONCLUSION: Moral Case Deliberation fosters quality of treatment and moral competence of professionals in dealing with ethical dilemmas in psychiatric practice. Continuity of Moral Case Deliberation meetings motivates the participants and provides the opportunity to learn and practice ethical skills.

The role of moral imagination in patients' decision-making.

This article reviews recent developments within a number of academic disciplines pointing toward an increasing importance of imagination for understanding morality and cognition. Using elements from hermeneutics and metaphor theory, it works toward a framework for a more context-sensitive understanding of human agency, especially focusing on moral deliberation and change. The analytic framework is used to analyze the story of a patient making tough decisions in the context of prenatal diagnosis. We show how a relatively stable outlook on the world, here called the "baseline of choice," is challenged by unexpected events and how imaginative processes enter into the active creation of a new moral order. The ensuing interpretation is then placed within a broader philosophical landscape. John Dewey's notion of "dramatic rehearsal" is put forward as one particularly promising way of understanding moral imagination, deliberation, and decision-making.

[The complexity of obesity--some ethical perspectives]. / Zum themenkomplex adipositas--einige ethische perspektiven.

The clinically oriented debate in the context of obesity is often blurred when in comes to morality, professional ethos and societal values. Surgeons, for example, might bring different normative approaches to the operation rooms than psychiatrists to their therapeutic sessions. These values often remain unspoken, but might change the medical conveyor belt of the patients affected. In this text, we want to focus on this so called "implicit normativity" of different stake holders. In addition, we question the concept of "illness" as obesity can be labelled as an illness and/or symptom - depending on the eyes of the observer. From a more societal perspective, any effort of prevention also comes with normative strings attached. Thus we plea for a stronger awareness of one's own values related to obesity, either in a clinical, personal or societal setting.

Donating embryos to stem cell research.

This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carried out in the United Kingdom, Switzerland, and China. All three studies used semi-structured interview protocols to allow an in-depth examination of donors' and non-donors' rationales for their donation decisions, with the aim of gaining information on contextual and other factors that play a role in donor decisions and identifying how these relate to factors that are more usually included in evaluations made by theoretical ethics. Our findings have implications for one factor that has previously been suggested as being of ethical concern: the role of gratitude. Our empirical work shows no evidence that interpersonal gratitude is an important factor, but it does support the existence of a solidarity-based desire to "give something back" to medical research. Thus, we use empirical data to expand and refine the conceptual basis of bioethically theorizing the IVF-stem cell interface.

Theory and practice of clinical ethics support services: narrative and hermeneutical perspectives.

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.

Predictive testing and existential absurdity: resonances between experiences around genetic diagnosis and the philosophy of Albert Camus.

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' (1942), 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.

Tragedy and Grenzsituationen in genetic prediction.

Philosophical anthropologies that emphasise the role of the emotions can be used to expand existing notions of moral agency and learning in situations of great moral complexity. In this article we tell the story of one patient facing the tough decision of whether to be tested for Huntington's disease or not. We then interpret her story from two different but compatible philosophical entry points: Aristotle's conception of Greek tragedy and Karl Jaspers' notion of Grenzsituationen (boundary situations). We continue by indicating some ways in which these two positions may be used for reflecting upon different perspectives involved in clinical decision-making, those of patients, clinicians and bioethicists. We conclude that the ideas we introduce can be used as hermeneutic tools for situating learning and dialogue within a broader cultural field in which literature and art may also play important roles.

Consultoria em ética clínica na Suíça / Clinical ethics consultancy in Switzerland

A realização de Consultorias em Ética Clínica tem sido reduzida, muitas vezes, a uma simples aplicação de um método de análise de casos baseados em princípios. A consultoria seria reduzida a uma simples avaliação de um conflito entre princípios. A proposta de uma abordagem baseada em uma Deliberação de Caso Moral pode ser uma alternativa importante, onde o consultor atua como facilitador e não tomando decisões que cabem aos profissionais de saúde.

Clinical Ethics Consultancy, often, has been reduced as a simple method of case analysis based on principles. The consultancy would be reduced to a simple evaluation of a conflict between principles. The proposed approach based on a Moral Case Deliberation could be an important alternative, where the consultant acts as a facilitator and not as a decision maker.

A challenged choice: donating spare embryos to stem cell research in Switzerland.

RESEARCH QUESTIONS: Couples undergoing IVF in Switzerland may have embryos in excess of their clinical need that they can donate to human embryonic stem cell research. Thus a new practice has emerged in Switzerland when IVF treatment and embryonic stem cell research come into contact. This interface needs to be investigated from an ethical-legal point of view to facilitate a fair informed choice process for the couples involved. METHODS: Ethical analysis, patient perspectives elaboration. Interdisciplinary approach that draws on the research project JESP-ELSI (joint embryonic stem cell research project--ethical legal and societal implications). RESULTS AND CONCLUSIONS: To facilitate the donation of surplus embryos to human embryonic stem cell research, we propose a procedure of informed choice that fits to the current Swiss legal situation. In addition we identify problems within the current legal setting and suggest methods to improve communication at the interface between IVF and embryonic stem cell research from an ethical perspective.

"So, what is an embryo?" A comparative study of the views of those asked to donate embryos for hESC research in the UK and Switzerland.

The moral status of the human embryo has gained much attention in debates over the acceptability, or otherwise, of human embryonic stem cell research. Far less attention has been paid to the suppliers of those embryos: people who have undergone IVF treatment to produce embryos to assist them to have a baby. It is sociologically and ethically important to understand their views and experiences of being asked to donate embryos for research if we are to fully understand the wider social and regulatory aspects of hESC science. This paper reports on parallel studies investigating these issues in the UK and in Switzerland. The studies reveal the inextricable entangling of the social and moral status of embryos. Since donors participate in different discursive domains and contexts (public, clinic, family) that shape their perception of "what" an embryo is, their views of embryos embody conflicting ideas and ambivalences.