The debate and implementation of Clinical Ethics Consultation is still in its beginnings in Europe and the issue of the patient's perspective has been neglected so far, especially at the theoretical and methodological level. At the practical level, recommendations about the involvement of the patient or his/her relatives are missing, reflecting the general lack of quality and practice standards in CEC. Balance of perspectives is a challenge in any interpersonal consultation, which has led to great efforts to develop “technical”approaches, e.g., (...) in psychological counseling or psychotherapeutic treatment. In ethics, unbalance or partiality is a matter of justice and has provoked significant theoretical work, also relevant for practical medical ethics. A lack of balance seems to be particularly serious in those situations, where ethical conflict is triggering a consultation and where the “parties” involved may try to persuade the consultant that their particular opinion is the most convincing; but to our knowledge the connection between patient/relatives involvement and balance has not yet been discussed in the context of CEC. Central questions of access and involvement of the patient and his/her relatives will be analysed and discussed regarding the challenge of balance and the adequate role or attitude of a Clinical Ethics Consultant. It is argued that the Clinical Ethics Consultant should have a methodological awareness regarding the concepts of “neutrality” versus “advocacy” in his/her role and try to achieve a balanced procedure that allows for an optimum of change of perspectives. The argumentation is developed along the narrative of a real case study. Recommendations concerning the involvement of the patient or the relatives are formulated for the practice of CEC. (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)

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)

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)