In den USA haben sich im Wesentlichen drei verschiedene Organisationsformen klinischer Ethikberatung entwickelt: der einzelne Berater, das große Komitee und das Beratungsteam teilweise mit Rückbindung an ein größeres Komitee. Bislang gibt es jedoch weder empirische Daten noch ein Ergebnis der anfänglichen theoretischen Diskussion, ob es ein favorisiertes Modell für die klinische Ethikberatung geben sollte und welches dieses sei. Dieser Artikel argumentiert, dass die Vorzüge, Nachteile und die Erfolgsfaktoren der verschiedenen Organisationsformen in Abhängigkeit von der Zielsetzung klinischer Ethikdienste (KED) bewertet werden (...) müssen. Diese Zielsetzung kann auf einem Spektrum vom „Patientenanwalt“ bis zum „Gewissen der Institution“ angesiedelt sein. Die Zielsetzung bestimmt dabei Aufgabenschwerpunkte, Zusammensetzung, die favorisierte Organisationsform und wünschenswerte Standards. Die Untersuchung stützt sich zum einen auf die Analyse von Interviews mit fünf Vorsitzenden klinischer Ethikkomitees von Harvard Lehrkrankenhäusern in Boston, die jeweils etwa 20 Jahre Erfahrung in klinischer Ethikberatung mit den drei unterschiedlichen Modellen gemacht haben. Zum anderen basiert sie auf der Rezeption der Literatur und empirischen Studien zu KEDs in den USA und Deutschland. Insgesamt scheint das Konsilteam mit Rückbindung an ein Komitee am besten geeignet, die Behandlung einzelner Patienten und das ethische Bewusstsein einer ganzen Organisation zu verbessern. Es vereint die Vorteile der anderen beiden Modelle auf sich, ohne unter deren Schwächen zu leiden. (shrink)

The aim of this study was to assess nurses’ and physicians’ ethical dilemmas in clinical practice. Nurses and physicians of the Clinical Hospital Centre Rijeka were surveyed (N = 364). A questionnaire was used to identify recent ethical dilemma, primary ethical issue in the situation, satisfaction with the resolution, perceived usefulness of help, and usage of clinical ethics consultations in practice. Recent ethical dilemmas include professional conduct for nurses (8%), and near-the-end-of-life decisions for physicians (27%). The main ethical issue is (...) limiting life-sustaining therapy (nurses 15%, physicians 24%) and euthanasia and physician-assisted suicide (nurses 16%, physicians 9%). The types of help available are similar for nurses and physicians: obtaining complete information about the patient (37% vs. 50%) and clarifying ethical issues (31% vs. 39%). Nurses and physicians experience similar ethical dilemmas in clinical practice. The usage of clinical ethics consultations is low. It is recommended that the individual and team consultations should be introduced in Croatian clinical ethics consultations services. (shrink)

‘DU bist Radio’ (DBR) is an award winning [DBR has been awarded with the “Catholic Media Award of the German Bishops Conference, Prädikat WERTvoll” (2011), the Suisse “Media Prize Aargau/Solothurn” (2010), the German “Alternative Media Award” (2009) and was nominated for the “Prix Europa” (2009)] monthly radio format that goes on air on three Swiss radio stations. The purpose of this program which was first broadcast in 2009 is the development of a new media format which—without applying any journalistic (or (...) other) filter and influence—conveys authenticity of expression amongst society’s most vulnerable fellow citizens such as patients, clients and the socially deprived. So-called marginal groups are encouraged to speak for themselves, as a possible paradigm case for encouraging the inclusion of patients’ and relatives’ “unfiltered” voices in general and in clinical ethics as well. Before handing over the microphone to the groups in focus, a team of journalists, educated in medical ethics, over a period of 4 days, teaches them on-site radio skills and craft. Once this task is completed and the actual production of the broadcast begins, the media crew does not exert any influence whatsoever on the content of the 1-h program. Thus, the final product is solely created and accounted for by the media-inexperienced participants, leading to unforeseen and often surprising results. It is discussed that the DBR approach of fostering authenticity of expression can serve as an enhancement to today’s respect and autonomy oriented field of medical ethics. (shrink)

Clinical ethics consultation has developed from local pioneer projects into a field of growing interest among both clinicians and ethicists. What is needed are more systematic studies on the ethical challenges faced in clinical practice and problem solving through ethics consultation from interdisciplinary perspectives. The Thematic Issue covers a range of topics and includes five recent studies from various European countries and the USA, focusing on issues such as the ethical difficulties of end of life decisions, experiences with newly developed (...) or well established ethics consultation services, and the expectations of physicians in various clinical fields who are still unfamiliar with clinical ethics consultation. The papers included illustrate the interface between different socio-cultural contexts and their ways of dealing with clinical ethics consultation. They deepen the dialogue on clinical ethics consultation that has emerged at the European and International level. (shrink)

BackgroundContemporary medical practice is complicated by many dilemmas requiring ethical sensitivity and moral reasoning.ObjectiveTo investigate physicians’ experience in ethical decision-making and their attitude towards ethics consultation.MethodsIn a cross-sectional survey 126 physicians representing the main clinics of Pleven University hospital were investigated by a self-administered questionnaire. The following variables were measured: occurrence, nature and ways of resolving ethical problems; physicians’ attitudes towards ethics consultation; physicians’ opinions on qualities and skills of an ethics consultant, and socio-demographic characteristics. Data analysis included descriptive statistics, (...) χ2 and t-test.ResultsResponse rate was 88.9% (n = 112). Men and women were equally represented (48.2%–51.8%). The sample consisted of experienced physicians: 42.9% had 11–20 years experience, and 33% had 21–30 years. According to 84.8% of respondents, ethical problems have been discussed in their specialty. Predominant dilemmas included relationships with patients and relatives (76.8%) and team work (67.6%). Over ¾ of physicians needed an advice in solving ethical problems. Ninety six percent responded positively to ethics consultation. They would mainly request it for resolving conflicts (72.5%), and in case of concern for the rightness of their decisions (52.7%). The image of an ethics consultant was built of clinical competence (70.9%), ability to deal with conflicts (59.1%), communication skills (58.2%), tolerance for different views (55.4%), and a special qualification in ethics (52.7%).ConclusionsThe study underlined that Pleven University hospital physicians face similar ethical dilemmas as their colleagues in other countries do. The expressed positive attitudes to ethics consultation should serve as a basis for further research and development of ethics consultation services. (shrink)

Research questions and backgroundThis study explores a highly controversial issue of medical care in Germany: the decision to withhold or withdraw mechanical ventilation in critically ill patients. It analyzes difficulties in making these decisions and the physicians’ uncertainty in understanding the German terminology of Sterbehilfe, which is used in the context of treatment limitation. Used in everyday language, the word Sterbehilfe carries connotations such as helping the patient in the dying process or helping the patient to enter the dying process. (...) Yet, in the legal and ethical discourse Sterbehilfe indicates several concepts: (1) treatment limitation, i.e., withholding or withdrawing life-sustaining treatment (passive Sterbehilfe), (2) the use of medication for symptom control while taking into account the risk of hastening the patient’s death (indirekte Sterbehilfe), and (3) measures to deliberately terminate the patient’s life (aktive Sterbehilfe). The terminology of Sterbehilfe has been criticized for being too complex and misleading, particularly for practical purposes. Materials and methods An exploratory study based on qualitative interviews was conducted with 28 physicians from nine medical intensive care units in tertiary care hospitals in the German federal state of Baden-Wuerttemberg. The method of data collection was a problem-centered, semi-structured interview using two authentic clinical case examples. In order to shed light on the relation between the physicians’ concepts and the ethical and legal frames of reference, we analyzed their way of using the terms passive and aktive Sterbehilfe. Results Generally, the physicians were more hesitant in making decisions to withdraw rather than withhold mechanical ventilation. Almost half of them assumed a categorical prohibition to withdraw any mechanical ventilation and more than one third felt that treatment ought not to be withdrawn at all. Physicians showed specific uncertainty about classifying the withdrawal of mechanical ventilation as passive Sterbehilfe, and had difficulties understanding that terminating ventilation is not basically illegal, but the permissibility of withdrawal depends on the situation. Conclusions The physicians’ knowledge and skills in interpreting clinical ethical dilemmas require specific improvement on the one hand; on the other hand, the terms passive and aktive Sterbehilfe are less clear than desirable and not as easy to use in clinical practice. Fear of making unjustified or illegal decisions may motivate physicians to continue (even futile) treatment. Physicians strongly opt for more open discussion about end-of-life care to allow for discontinuation of futile treatment and to reduce conflict. (shrink)

Clinical ethics committees have existed in Norway since 1996. By now all hospital trusts have one. An evaluation of these committees’ work was started in 2004. This paper presents results from an interview study of eight clinicians who evaluated six committees’ deliberations on 10 clinical cases. The study indicates that the clinicians found the clinical ethics consultations useful and worth while doing. However, a systematic approach to case consultations is vital. Procedures and mandate of the committees should be known to (...) clinicians in advance to ensure that they know what to expect. Equally important is bringing all relevant facts, medical as well as psychosocial, into the discussion. A written report from the deliberation is also important for the committees to be taken seriously by the clinicians. This study indicates that the clinicians want to be included in the deliberation, and not only in the preparation or follow-up. Obstacles for referring a case to the committee are the medical culture’s conflict aversion and its anxiety of being judged by outsiders. The committees were described as a court by some of the clinicians. This is a challenge for the committees in their attempt to balance support and critique in their consultation services. (shrink)

Clinical ethics support services are developing in Europe. They will be most useful if they are designed to match the ethical concerns of clinicians. We conducted a cross-sectional mailed survey on random samples of general physicians in Norway, Switzerland, Italy, and the UK, to assess their access to different types of ethics support services, and to describe what makes them more likely to have used available ethics support. Respondents reported access to formal ethics support services such as clinical ethics committees (...) (23%), consultation in individual cases (17.6%), and individual ethicists (8.8%), but also to other kinds of less formal ethics support (23.6%). Access to formal ethics support services was associated with work in urban hospitals. Informal ethics resources were more evenly distributed. Although most respondents (81%) reported that they would find help useful in facing ethical difficulties, they reported having used the available services infrequently (14%). Physicians with greater confidence in their knowledge of ethics (P = 0.001), or who had had ethics courses in medical school (P = 0.006), were more likely to have used available services. Access to help in facing ethical difficulties among general physicians in the surveyed countries is provided by a mix of official ethics support services and other resources. Developing ethics support services may benefit from integration of informal services. Development of ethics education in medical school curricula could lead to improved physicians sensititity to ethical difficulties and greater use of ethics support services. Such support services may also need to be more proactive in making their help available. (shrink)

In den USA haben sich im Wesentlichen drei verschiedene Organisationsformen klinischer Ethikberatung entwickelt: der einzelne Berater, das große Komitee und das Beratungsteam teilweise mit Rückbindung an ein größeres Komitee. Bislang gibt es jedoch weder empirische Daten noch ein Ergebnis der anfänglichen theoretischen Diskussion, ob es ein favorisiertes Modell für die klinische Ethikberatung geben sollte und welches dieses sei. Dieser Artikel argumentiert, dass die Vorzüge, Nachteile und die Erfolgsfaktoren der verschiedenen Organisationsformen in Abhängigkeit von der Zielsetzung klinischer Ethikdienste (KED) bewertet werden (...) müssen. Diese Zielsetzung kann auf einem Spektrum vom „Patientenanwalt“ bis zum „Gewissen der Institution“ angesiedelt sein. Die Zielsetzung bestimmt dabei Aufgabenschwerpunkte, Zusammensetzung, die favorisierte Organisationsform und wünschenswerte Standards. Die Untersuchung stützt sich zum einen auf die Analyse von Interviews mit fünf Vorsitzenden klinischer Ethikkomitees von Harvard Lehrkrankenhäusern in Boston, die jeweils etwa 20 Jahre Erfahrung in klinischer Ethikberatung mit den drei unterschiedlichen Modellen gemacht haben. Zum anderen basiert sie auf der Rezeption der Literatur und empirischen Studien zu KEDs in den USA und Deutschland. Insgesamt scheint das Konsilteam mit Rückbindung an ein Komitee am besten geeignet, die Behandlung einzelner Patienten und das ethische Bewusstsein einer ganzen Organisation zu verbessern. Es vereint die Vorteile der anderen beiden Modelle auf sich, ohne unter deren Schwächen zu leiden. (shrink)

Entscheidungen der Therapiebegrenzung und in der Betreuung am Lebensende sind häufig komplex und von ethischen Problemen begleitet. Im Mittelpunkt der Untersuchung steht die entscheidende Frage, wie hilfreich existierende „Ethik-Richtlinien“, die eine ethische Orientierung bei solchen Entscheidungen geben sollen, in der klinischen Praxis tatsächlich sind. Die Frage, welchen Nutzen „Ethik-Richtlinien“ bei der Entscheidungsfindung haben oder haben können, wird hier exemplarisch an einem klinischen Fallbeispiel aus einer Ethik-Kooperationsstudie in der Intensivmedizin analysiert. Vergleichend werden hierzu „Ethik-Richtlinien“ aus Deutschland, der Schweiz und aus Großbritannien (...) herangezogen, die Gegenstand eines internationalen Projekts zur Analyse von Richtlinien waren. Die Möglichkeiten und Grenzen einer ethischen Orientierung an „Ethik-Richtlinien“ bei Entscheidungsproblemen der Therapiebegrenzung und in der Betreuung am Lebensende werden anhand der Fallstudie diskutiert und illustriert. Abschließend werden Schlussfolgerungen für die Entwicklung ethischer Richtlinien für die klinische Praxis formuliert. (shrink)

ZusammenfassungEntscheidungen der Therapiebegrenzung und in der Betreuung am Lebensende sind häufig komplex und von ethischen Problemen begleitet. Im Mittelpunkt der Untersuchung steht die entscheidende Frage, wie hilfreich existierende „Ethik-Richtlinien“, die eine ethische Orientierung bei solchen Entscheidungen geben sollen, in der klinischen Praxis tatsächlich sind. Die Frage, welchen Nutzen „Ethik-Richtlinien“ bei der Entscheidungsfindung haben oder haben können, wird hier exemplarisch an einem klinischen Fallbeispiel aus einer Ethik-Kooperationsstudie in der Intensivmedizin analysiert. Vergleichend werden hierzu „Ethik-Richtlinien“ aus Deutschland, der Schweiz und aus Großbritannien (...) herangezogen, die Gegenstand eines internationalen Projekts zur Analyse von Richtlinien waren. Die Möglichkeiten und Grenzen einer ethischen Orientierung an „Ethik-Richtlinien“ bei Entscheidungsproblemen der Therapiebegrenzung und in der Betreuung am Lebensende werden anhand der Fallstudie diskutiert und illustriert. Abschließend werden Schlussfolgerungen für die Entwicklung ethischer Richtlinien für die klinische Praxis formuliert. (shrink)

Ethics consultation is a familiar concept to clinicians, and there are site-specific guidelines detailing procedures for both obtaining and performing these consults. Evaluative data about clinician experiences with ethics consults are becoming more extensive but information about family experiences, especially parent perceptions, of the same is lacking. Without a better understanding of those family experiences, an evidence base for ethics consultations cannot be built. This manuscript describes the reasons for obtaining this necessary information, details prior research designed to obtain knowledge (...) about family experiences with pediatric ethics consultations, and suggests mechanisms for acquiring it. (shrink)

If ethics consultation services influence medical decisions it is important to evaluate how ethical dilemmas are dealt with by clinical ethics committees (CECs). Such evaluation is rare. This study presents a feasible and practical method of evaluating case discussions in CECs and the results emerging from the use of this method. A written presentation of an end-of-life dilemma was sent to all Norwegian ethics committees. The committees were asked to deal with the case as they would do if it was (...) a real case, and to prepare a written report of the discussion. A majority of the committees approached the case systematically. All emphasized the importance of good communication with the next of kin. However, their conclusions varied, medical facts were interpreted differently, possible patient suffering was dealt with differently, and some committees revealed insufficient legal knowledge. Such findings are useful in the future education of committee members. (shrink)

Moral case deliberation (MCD) is a form of clinical ethics support in which the ethicist as facilitator aims at supporting professionals with a structured moral inquiry into their moral issues from practice. Cases often affect clients, however, their inclusion in MCD is not common. Client participation often raises questions concerning conditions for equal collaboration and good dialogue. Despite these questions, there is little empirical research regarding client participation in clinical ethics support in general and in MCD in particular. This article (...) aims at describing the experiences and processes of two MCD groups with client participation in a mental healthcare institution. A responsive evaluation was conducted examining stakeholders’ issues concerning client participation. Findings demonstrate that participation initially creates uneasiness. As routine builds up and client participants meet certain criteria, both clients and professionals start thinking beyond ‘us-them’ distinctions, and become more equal partners in dialogue. Still, sentiments of distrust and feelings of not being safe may reoccur. Client participation in MCD thus requires continuous reflection and alertness on relational dynamics and the quality of and conditions for dialogue. Participation puts the essentials of MCD (i.e., dialogue) to the test. Yet, the methodology and features of MCD offer an appropriate platform to introduce client participation in healthcare institutions. (shrink)

There is growing interest in clinical ethics. However, we still have sparse knowledge about what is actually going on in the everyday practice of clinical ethics consultations. This paper introduces a descriptive evaluation tool to present, discuss and compare how clinical ethics case consultations are actually carried out. The tool does not aim to define ‘best practice’. Rather, it facilitates concrete comparisons and evaluative discussions of the role, function, procedures and ideals inherent in clinical ethics case consultation practices. The tool (...) was developed during meetings of the European Clinical Ethics Network. Based on written reports and participation in the network meetings, the development and the content of the tool and the results of its application in presenting and discussing 10 case consultations are summarized. The tool facilitated understanding of the details of clinical ethics case consultations across individuals and institutions with various experiences and cultures, and comparison between various practices. (shrink)

To date, few Norwegian clinical ethics committees (CECs) have included patients or next of kin in case discussions. In 2008, Rikshospitalet's (The National Hospital's) CEC began to routinely invite patients and relatives into case discussions. In this paper, we describe seven cases discussed by this committee in 2008. Six involved life and death decision-making in collaboration with the next of kin, while one related case did not include relatives. In our opinion, representing the patient's perspective was advantageous to the discussion (...) itself, to the conclusion made and to the next of kin's acceptance of the resolution. We believe that if the patient had been represented in the last case, the outcome might have been different. We conclude that successful patient involvement will rely on well-structured case discussions, an open atmosphere and good preparation and follow-up. (shrink)

Clinical ethics has developed significantly in Europe over the past 15 years and remains an evolving process. While sharing our experiences in different European settings, we were surprised to discover marked differences in our practice, especially regarding the position and role of patients. In this paper, we describe these differences, such as patient access to and participation or representation in ethics consults. We propose reasons to explain these differences, hypothesizing that they relate to the historic and sociocultural context of implementation (...) of clinical ethics consultation services (Cecs), as well as the initial aims for which each structure was established. Then, we analyse those differences with common ethical arguments arising in patient involvement. We conclude that there is no unique model of best practice for patient involvement in clinical ethics, as far as Cecs reflect on how to deal with the challenging ethical issues raised by patient role and position. (shrink)

Ethics consultation is a novel paradigm in European health-care institutions. In this paper, patient involvement in all clinical ethics activities is scrutinized. It is argued that patients should have access to case consultation services via clearly defined access paths. However, the right of both health-care professionals and patients indicates that patients should not always be notified of a consultation. Ethics education, another well-established function of an ethics committee, should equally be available for patients, lay people and hospital staff. Beyond access (...) and utilization, lay membership on a clinical ethics service is a matter of transparency, equal participation, empowerment and democratization. Lay and patient perspectives will contribute to the quality of ethics services on all levels from case consultations to ethics education and policy development. (shrink)

The Clinical ethics centre in Paris offers its services equally to doctors and patients/proxies. Its primary goal is to re-equilibrate doctor–patient roles through giving greater voice to patients individually in medical decisions. Patients are present at virtually all levels, initiating consults, providing their point of view and receiving feedback. The implications of patients' involvement are threefold. At an operational level, decision-making is facilitated by repositioning the debate on ethical grounds and introducing a dynamic of decisional partnership, although contact with patients (...) can make it difficult to deny their demands and set the limits of our role. Ethically, it reinforces patients' autonomy and grants them a place of veritable ethics ‘actors’, with the danger that this may become excessively autonomy oriented. Finally, at a collective level, the programme fulfils its political purpose in promoting patients' rights and the ideal of démocratie sanitaire, but complicates balancing individual demands with collective values. (shrink)

Background: Ethics support services are growing in Europe to help doctors in dealing with ethical difficulties. Currently, insufficient attention has been focused on the experiences of doctors who have faced ethical difficulties in these countries to provide an evidence base for the development of these services.Methods: A survey instrument was adapted to explore the types of ethical dilemma faced by European doctors, how they ranked the difficulty of these dilemmas, their satisfaction with the resolution of a recent ethically difficult case (...) and the types of help they would consider useful. The questionnaire was translated and given to general internists in Norway, Switzerland, Italy and the UK.Results: Survey respondents ranged in age from 28 to 82 years, and averaged 25 years in practice. Only a minority reported having access to ethics consultation in individual cases. The ethical difficulties most often reported as being encountered were uncertain or impaired decision-making capacity , disagreement among caregivers and limitation of treatment at the end of life . The frequency of most ethical difficulties varied among countries, as did the type of issue considered most difficult. The types of help most often identified as potentially useful were professional reassurance about the decision being correct , someone capable of providing specific advice , help in weighing outcomes and clarification of the issues . Few of the types of help expected to be useful varied among countries.Conclusion: Cultural differences may indeed influence how doctors perceive ethical difficulties. The type of help needed, however, did not vary markedly. The general structure of ethics support services would not have to be radically altered to suit cultural variations among the surveyed countries. (shrink)

In den USA haben sich im Wesentlichen drei verschiedene Organisationsformen klinischer Ethikberatung entwickelt: der einzelne Berater, das große Komitee und das Beratungsteam teilweise mit Rückbindung an ein größeres Komitee. Bislang gibt es jedoch weder empirische Daten noch ein Ergebnis der anfänglichen theoretischen Diskussion, ob es ein favorisiertes Modell für die klinische Ethikberatung geben sollte und welches dieses sei. Dieser Artikel argumentiert, dass die Vorzüge, Nachteile und die Erfolgsfaktoren der verschiedenen Organisationsformen in Abhängigkeit von der Zielsetzung klinischer Ethikdienste (KED) bewertet werden (...) müssen. Diese Zielsetzung kann auf einem Spektrum vom „Patientenanwalt“ bis zum „Gewissen der Institution“ angesiedelt sein. Die Zielsetzung bestimmt dabei Aufgabenschwerpunkte, Zusammensetzung, die favorisierte Organisationsform und wünschenswerte Standards. Die Untersuchung stützt sich zum einen auf die Analyse von Interviews mit fünf Vorsitzenden klinischer Ethikkomitees von Harvard Lehrkrankenhäusern in Boston, die jeweils etwa 20 Jahre Erfahrung in klinischer Ethikberatung mit den drei unterschiedlichen Modellen gemacht haben. Zum anderen basiert sie auf der Rezeption der Literatur und empirischen Studien zu KEDs in den USA und Deutschland. Insgesamt scheint das Konsilteam mit Rückbindung an ein Komitee am besten geeignet, die Behandlung einzelner Patienten und das ethische Bewusstsein einer ganzen Organisation zu verbessern. Es vereint die Vorteile der anderen beiden Modelle auf sich, ohne unter deren Schwächen zu leiden. (shrink)

Questions concerning the parent/ patient’s autonomy are seen as one of the most important reasons for requesting Ethics Consultations. Respecting parent/ patient’s autonomy also means respecting the patient’s wishes. But those wishes may be controversial and sometimes even go beyond legal requirements. The objective of this case series of 32 ECs was to illustrate ethically challenging parent / patients’ wishes during the first stages of life and how the principle of patient’s autonomy was handled. The case series has a qualitative (...) retrospective approach. A documentary sheet was designed de novo and information was gained from EC minutes and medical charts. The cases originate from the following specialties: reproductive medicine, obstetrics and neonatology as well as two interdisciplinary cases. Through the structured EC minutes aspects of patient / parents’ wishes could be identified explicitly. Overall the patient / parents’ wishes were not supported in 61% of the cases. Central reasons for rejection of patient / parent wishes were mainly the protection of the best interest of the unborn / new-born child as well as the rejection of clinical approaches that were regarded as being substandard treatment. The study shows that treatment decisions in reproductive medicine, obstetrics and neonatology raise substantial ethical questions leading to the request for ethics consultation. The systematic case series presented here gives insight into the ethical reflection carried out to support the clinicians in their decision-making and counselling. It shows that clinicians, after using ethics consultation, make deliberate decisions that do not “automatically” fulfil the treatment requests of the patients and parents. (shrink)

Background: Patient participation in clinical ethics support services has been marked as an important issue. There seems to be a wide variety of practices globally, but extensive theoretical or empirical studies on the matter are missing. Scarce publications indicate that, in Europe, patient participation in CESS varies from region to region, and per type of support. Practices vary from being non-existent, to patients being a full conversation partner. This contrasts with North America, where PP seems more or less standard. While (...) PP seems to be on the rise in Europe, there is no data to confirm this. This study sought a deep understanding of both habits and the attitudes towards PP in the Netherlands, including respondents’ practical and normative perspectives on the matter. Methods and Results: We developed a national survey on PP for Dutch CESS staff. Our survey comprised a total of 25 open and close-ended questions, focused on four topics related to PP goals of CESS, status quo of PP, ideas and ideals concerning PP, and obstacles for PP. Discussion: The four most important findings were that: Patient participation in Dutch CESS is far from standard. Views on patient participation are very much intertwined with the goals of ethics support. Hesitations, fears and perceived obstacles for PP were not on principle and Most respondents see PP as a positive opportunity, yet requiring additional training, practical guidance and experience. Conclusions: Various normative reasons require PP. However, PP seems far from standard and somewhat rare in Dutch CESS settings. Our respondents did not raise many principled objections to PP. Instead, reasons for the lack of PP are intertwined with viewpoints on the goals of CESS, which seemingly focus on supporting health care professionals. Training and practical guidance was thought to be helpful for gaining experience for both CESS staff and HCPs. (shrink)

BackgroundAll hospital trusts in Norway have clinical ethics committees. Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.MethodsTen next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care personnel who (...) could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.ResultsAll next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child’s impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead.All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.ConclusionsNone of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC’s role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion. (shrink)

The French medical context is characterized by institutionalization of the ethical reflection in health care facilities and an important disparity between spaces of ethical reflection. In theory, the healthcare professional may mobilise an arsenal of resources to help him in his ethical reflection. But what happens in practice? We conducted semi-structured interviews with 22 health-care professionals who did and did not have recourse to clinical ethical committees. We also implemented two focus groups with 18 professionals involved in various spaces of (...) ethical reflection in order to let them debate about a better way to organize ethical reflection in their institutional contexts. The qualitative analysis allows to us to underline the coexistence of different conceptions of ethics among health care professionals. We also observed that the participants in our study shared the experience of ethically problematic situations as roadblocks in the process of communication and decision-making. We therefore report the factors which favour or inhibit the ethical course leading to the resolution or at the very least soothing of the situation at hand. Finally, we discuss methodological issues and underline the fact that while the patient is at the heart of the professional’s ethical preoccupations, this does not imply that they are actors in decisions that concern them. (shrink)

Clinical ethics consultations exist to support patients, families and clinicians who are facing ethical or moral challenges related to patient care. They provide a forum for open communication, where all stakeholders are encouraged to express their concerns and articulate their viewpoints. Ethics consultations can be requested by patients, caregivers or members of a patient’s clinical or supportive team. Althoughpatientsand by extension their families (especially in cases of decisional incapacity) are the common denominators in most ethics consultations, these constituents are theleastlikely (...) to request them. At many healthcare organisations in the USA, ethics consultations are overwhelmingly requested by physicians and other clinicians. We believe it is vital that healthcare institutions bridge the knowledge gaps and power imbalances over access to ethics consultation services through augmented policies, procedures and infrastructure. With enhanced education and support, patients and families may use ethics consultation to elevate their voices and prioritise their unique characteristics and preferences in the delivery of their healthcare. Empowering patients and families to request ethics consultation can only strengthen the patient/family–clinician relationship, enhance the shared decision-making model of care and ultimately lead to improved patient-centred care. (shrink)

The procedures for structuring clinical ethics case reflections in a childhood cancer care setting are presented, including an eight-step model. Four notable characteristics of the procedures are: members of the inter-professional health care team, not external experts, taking a leading role in the reflections; patients or relatives not being directly involved; the model explicitly addressing values and moral principles instead of focussing exclusively on the interests of involved parties; using a case-based rather than principle-based method. By discusing the advantages and (...) disadvantages of the proposed procedures, our paper aims to contribute to the literature on models and procedures for ethical analysis that can be used in clinical settings. It is suggested that our proposed procedures have some advantageous features when it comes to promoting health care staff’s learning to structure their thinking about ethical issues. (shrink)

With disagreement, doubts, or ambiguous grounds in end–of-life decisions, doctors are advised to involve a clinical ethics committee. However, little has been published on doctors’ experiences with discussing an end-of-life decision in a CEC. As part of the quality assurance of this work, we wanted to find out if clinicians have benefited from discussing end-of-life decisions in CECs and why. We will disseminate some Norwegian doctors’ experiences when discussing end-of-life decisions in CECs, based on semi-structured interviews with fifteen Norwegian physicians (...) who had brought an end-of-life decision case to a CEC. Almost half of the cases involved conflicts with the patients’ relatives. In a majority of the cases, there was uncertainty about what would be the ethically preferable solution. Reasons for referring the case to the CEC were to get broader illumination of the case, to get perspective from people outside the team, to get advice, or to get moral backing on a decision already made. A great majority of the clinicians reported an overall positive experience with the CECs’ discussions. In cases where there was conflict, the clinicians reported less satisfaction with the CECs’ discussions. The study shows that most doctors who have used a CEC in an end-of-life decision find it useful to have ethical and/or legal aspects illuminated, and to have the dilemma scrutinized from a new perspective. A systematic discussion seems to be significant to the clinicians. (shrink)

In spite of an intensive discussion of ethical subjects, psychiatric departments rarely request clinical ethics support. However, during regular psychological supervisions subjects with an underlying ethical conflict are increasingly encountered. Based on the case study of a 39-year-old female patient suffering from personality disorder and her newborn child, the role of ethical consultation in psychiatric treatment and the decision making regarding health and welfare of child and mother will be presented. While discussing opportunities and limitations of psychological supervision as a (...) possible vehicle for clinical ethics support, it becomes obvious that during psychological supervision, ethical conflicts can also be reflected and treatment alternatives be evaluated. Psychological supervision finds its limits because of its more intuitive processes when the conflict escalates, when the patient cannot be involved and when institutional interests dominate. In these cases, the more structured and formalised process of clinical ethics consultation clearly offers advantages. (shrink)

When ethical decisions have to be taken in critical, complex medical situations, they often involve decisions that set the course for or against life-sustaining treatments. Therefore the decisions have far-reaching consequences for the patients, their relatives, and often for the clinical staff. Although the rich psychology literature provides evidence that reasoning may be affected by undesired influences that may undermine the quality of the decision outcome, not much attention has been given to this phenomenon in health care or ethics consultation. (...) In this paper, we aim to contribute to the sensitization of the problem of systematic reasoning biases by showing how exemplary individual and group biases can affect the quality of decision-making on an individual and group level. We are addressing clinical ethicists as well as clinicians who guide complex decision-making processes of ethical significance. Knowledge regarding exemplary group psychological biases (e.g. conformity bias), and individual biases (e.g. stereotypes), will be taken from the disciplines of social psychology and cognitive decision science and considered in the field of ethical decision-making. Finally we discuss the influence of intuitive versus analytical (systematical) reasoning on the validity of ethical decision-making. (shrink)