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)

As support for clinical ethics committees in the UK grows, care must be taken to define their function, membership and method of working and the status of their decisions.The modern practice of medicine raises a plethora of complex issues—medical, ethical and legal. Doctors and other healthcare professionals increasingly must try to resolve these and may sometimes have to do so in the face of contrary opinion expressed by patients and/or their surrogates. While clearly qualified in the medical arena, and although (...) there is now more ethics teaching in the medical curriculum, healthcare professionals are seldom qualified to adjudicate on ethical or legal matters, or even, perhaps, to recognise them when they arise. Yet, as Doyal says, “clinical life must go on and moral and legal indeterminacy within medicine cries out for practical resolution.”1 Meanwhile, the expectations of patients and their families—and, indeed, of wider society—are that decisions about patient care, resources and therapeutic regimes should be soundly based on appropriate ethicolegal, as well as scientific, principle.Recognition of these additional burdens on healthcare professionals has generated some interest in the provision of ethics consultation. In the USA this has been undertaken by a variety of tribunals and individuals. Hospital ethics committees and ethics consultants feature in many US hospitals and perform a variety of roles. In Europe, a number of countries have also established clinical ethics committees and they are becoming more common in the UK—primarily in England and Wales for the moment. Whereas, however, “[i]n North America, CECs have … become an integral part of the organisational infrastructure of hospitals ...”,1 in the United Kingdom they remain essentially ad hoc bodies, generated for a variety of reasons and with different goals, structures, membership, methods of working and functions. The initial impetus for the …. (shrink)

Background: Clinical ethics consultation services have been established in many countries during recent decades. An important task is to discuss concrete clinical cases. However, empirical research observing what is happening during such deliberations is scarce. Objectives: To explore clinical ethics committees’ deliberations and to identify areas for improvement. Design: A pilot study including observations of committees deliberating a paper case, semistructured group interviews, and qualitative analysis of the data. Participants: Nine hospital ethics committees in Norway. Results and interpretations: Key elements (...) of the deliberations included identifying the ethical problems; exploring moral values and principles; clarifying key concepts and relevant legal regulation; exploring medical facts, the patient’s situation, the therapists’ perspective, analogous clinical situations, professional uncertainties, the patient’s and relatives’ perspective, and clinical communication; identifying the involved parties and how to involve them; identifying possible courses of action, and possible conclusion and follow-up. The various elements were closely interwoven. The content and conclusions varied and seemed to be contingent on the committee members’ interpretations, experience and knowledge. Important aspects of a clinical ethics deliberation were sometimes neglected. When the committees used a deliberation procedure and a blackboard, the deliberations tended to become more systematic and transparent. Many of the committees were insecure about how to include the involved parties and how to document the deliberations. Conclusion: Clinical ethics committees may provide an important arena for multidisciplinary discussions of complex clinical ethics challenges. However, this seems to require adequate composition, adoption of transparent deliberation procedures, and targeted training. (shrink)

How closely involved with hospital ethics committees should patients and their families become? Should they routinely have access to committees, or be empowered to initiate consultations? To what extent should they be informed of the content or outcome of committee deliberations? Seeing ethics committees as the locus of competing responsibilities allows us to respond to the questions posed by a patient rights model and to acknowledge more fully the complex moral dynamics of clinical medicine.

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)

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)

A pilot center for clinical ethics in France opened with the establishment of the “Centre d'éthique clinique” at Cochin Hospital in Paris, September 2002. Unlike the longer history in the United States of providing ethics consultation for ethical issues deriving from physician–patient interactions, this center marks a new development in bringing clinical ethics to Europe.

Objectives: To summarise the types of case brought to the Clinical Ethics Committee of the National Hospital of Norway from 1996 to 2002 and to describe and discuss to what extent issues of information/communication have been involved in the ethical problems. Design: Systematic review of case reports. Findings: Of the 31 case discussions, (20 prospective, 11 retrospective), 19 cases concerned treatment of children. Twenty cases concerned ethical problems related to withholding/withdrawing of treatment. In 25 cases aspects of information/communication were involved (...) in the ethical problem, either explicitly (n = 3) or implicitly (n = 22). Conclusion: Problems related to information/communication may underlie a classic ethical problem. Identification of these “hidden” problems may be important for the analysis, and hence, the solution to the ethical dilemma. (shrink)