Background In 2001 a report on the provision of clinical ethics support in UK healthcare institutions identified 20 clinical ethics committees. Since then there has been no systematic evaluation or documentation of their work at a national level. Recent national surveys of clinical ethics services in other countries have identified wide variation in practice and scope of activities. Objective To describe the current provision of ethics support in the UK and its development since 2001. Method A postal/electronic questionnaire survey administered (...) to the chairs of all 82 clinical ethics services registered with the UK Clinical Ethics Network in July 2010. Results Response rate was 62% with the majority of responding services situated in acute trusts. All services included a clinical ethics committee with one service also having a clinical ethicist. Lay members were present in 72% of responding committees. Individual case consultation has increased since 2001 with 29% of chairs spending more than 50% of their time on this. Access to and involvement in the process of case consultation is less for patients and families than for clinical staff. There is wide variation in committee processes and levels of institutional support. Over half of the responding committees undertook some form of evaluation. Conclusion Clinical ethics services in the UK are increasing as is their involvement in case consultation. However, the significant variation in committee processes suggests that further qualitative research is needed to understand how these committees function and the role they play in their institution. (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)

Clinical ethics committees (CECs) in the United Kingdom (UK) have developed significantly over the past 15 years. The issue of access to and participation in clinical ethics consultation by patients and family members has, however, gone largely unrecognized. There are various dimensions to this kind of contact, including patient notification, consent and participation. This study reports the first specific investigation of patient contact with UK CECs. A questionnaire study was carried out with representatives from UK CECs. Results suggest that patient (...) participation in clinical ethics consultation is low and unlikely to change significantly in the near future. Attitudes towards patients having a role in clinical ethics consultation are mixed, with a variety of reasons put forward both for and against patient participation. These results are discussed in the light of common themes in the literature and the practical and political context of clinical ethics support in the UK. (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)

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)

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)

Authority is an uneasy, political notion. Heard with modern ears, it calls forth images of oppression and power. In institutional settings, authority is everywhere present, and its use poses problems for the exercise both of individual autonomy and of responsibility. In medical ethics, the exercise of authority has been located on the side of the physician or the health care institution, and it has usually been opposed by appeal to patient autonomy and rights. So, it is not surprising, though still (...) ironic, that ethics consultation, which develops from this patient rights-dominated ethic, should itself bring forth questions of authority. Nonetheless, it does. Insofar as authority has been discussed in ethics consultations, it has been understandably approached from the broad perspective of legitimation and power, which are common themes in social and political treatments of authority. These treatments have dominated twentieth-century discussions of authority, which primarily view authority as legitimate power. (shrink)

Authority is an uneasy, political notion. Heard with modern ears, it calls forth images of oppression and power. In institutional settings, authority is everywhere present, and its use poses problems for the exercise both of individual autonomy and of responsibility. In medical ethics, the exercise of authority has been located on the side of the physician or the health care institution, and it has usually been opposed by appeal to patient autonomy and rights. So, it is not surprising, though still (...) ironic, that ethics consultation, which develops from this patient rights-dominated ethic, should itself bring forth questions of authority. Nonetheless, it does.Insofar as authority has been discussed in ethics consultations, it has been understandably approached from the broad perspective of legitimation and power, which are common themes in social and political treatments of authority. These treatments have dominated twentieth-century discussions of authority, which primarily view authority as legitimate power. (shrink)