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: 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)

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)

This survey describes in detail ethics committees (ECs) at acute care hospitals in Upstate New York. It finds that in just two years (1984 and 1985), following the Baby Doe controversy and the Report of the President’s Commission, 40% of urban ECs and 37% of university ECs were formed. One half of rural ECs formed in 1992–1995, following the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) requirement of access to ethics consultation. Generally, ECs are committees of the powerful within (...) the hospital; the administration or the medical staff is the organizational parent of 73% of ECs. These groups appoint 80% of EC chairs and 79% of members; they constitute 45% of the membership. Most EC members (81%) lack even rudimentary formal training in bioethics, yet only 18% of ECs consider member education a major role. Many ECs are rather inactive: 53% meet less than every other month and 61% have fewer than six case consultations in the prior year. On the basis of this survey’s findings, suggestions are offered to improve the credibility of these ubiquitous committees as stewards of bioethics, rather than of the powerful within the hospital. (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)

This paper offers an exposition of what the question of method in ethics consultation involves under two conditions: when ethics consultation is regarded as a practice and when the question of method is treated systematically. It discusses the concept of the practice and the importance of rules in constituting the actions, cognition, and perceptions of practitioners. The main body of the paper focuses on three elements of the question of method: canon, discipline, and history, which are treated heuristically to outline (...) what the question of method in ethics consultation fully involves. (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)

We believe that most bioethies committees as well as individual ethics consultants have major shortcomings in that they are unlikely to be open to serving the widest number of citizens who may need their services when facing bioethical dilemmas. The HDCC serves as a community resource, is open to all citizens, is free standing, and provides a wide variety of perspectives which can assist patients, their families, and healthcare providers to explore a range of values and options.The HDCC serves as (...) a model for communities that seek to establish a bioethics resource. Further, the HDCC model permits the further exploration of ways in which important healthcare issues can be faced. AHD believes, in keeping with its mission, that the creation of the HDCC can increase the public's awareness of and involvement in healthcare issues. As B. Jennings reminds us,The mission of community health decisions projects is to stimulate a well-informed conversation where many voices are heard and all reasonable perspectives given due consideration. They not only inform, but also enable responsible civic participation and thoughtful health care decisionmaking (6).The HDCC model can serve to bring discussions on bioethical dilemmas out of secrecy into safer, yet more open, community fora. (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)

In 1992, the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) passed a mandate that all its approved hospitals put in place a means for addressing ethical concerns.Although the particular process the hospital uses to address such concernsmay vary, the hospital or healthcare ethics committee (HEC) is used most often. In a companion study to that reported here, we found that in 1998 over 90% of U.S. hospitals had ethics committees, compared to just 1% in 1983, and that many (...) have some and a few have sweeping clinical powers in hospitals. (shrink)

Much has been written about the role of hospital ethics committees. Ethics committees may have begun in Seattle in the early 1960s, but they were reified in. New Jersey by the Quinlan Court in the 1970s and thrived in the national bioethics movement of the 1980s.In this flurry of ethics activity, several new forms of ethics committees have evolved. New forms of ethics committees include patient care-oriented ethics committees. Many ethicists are familiar with mission-oriented ethics committees. Such committees have taken (...) on new roles, and Include PROs, IPCs, and HREAPs. In general, these committees are regulatory in nature and may often rely on rules and regulations to assess patient cases, research protocols, and health professional practices. (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)

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)

Many clinical ethics support services do not involve patients. This is surprising because of the broad commitment to provide patient-centered healthcare. Clinical ethics support services are a component of the healthcare system and have an influence on patient care, and should therefore align with the regulatory and ethical requirements of patient-centered care, just process and cultural competence. First, in order to achieve good patient care, it is essential to involve patients in making their own healthcare decisions. Second, just ethical deliberation (...) requires that the deliberating parties have access to complete, accurate and unbiased information – this is best achieved through direct patient input. These arguments are especially compelling in the case of non-dominant cultural and ethnic groups. Here, we argue that when a clinician refers a case to a clinical ethics support services for consideration, and that case involves a conflict between the views or values of the clinician and the patient, the patient is entitled to, at a minimum: (a) be informed of the referral; (b) have the opportunity to speak directly to the clinical ethics support services prior to deliberation; (c) be provided with any opinion directly from the clinical ethics support services; and (d) have the opportunity to speak to a clinical ethics support services member after the deliberation. We use New Zealand as a case study to support and extrapolate the ethical principles and the minimum patient involvement requirements. We draw on our empirical research with senior doctors at a tertiary New Zealand hospital. Clinicians in our study indicated that they would feel bound by clinical ethics support service advice and that the clinical ethics support service has a significant impact on patient care in the case it reviews. (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)

For some time, clinical ethics committees (CECs) have been a prominent feature of hospitals in North America. Such committees are less common in the United Kingdom and Europe. Focusing on the UK, this paper evaluates why CECs have taken so long to evolve and assesses the roles that they should play in health care policy and clinical decision making. Substantive and procedural moral issues in medicine are differentiated, the former concerning ethicolegal principles and their paradigmatic application to clinical practice and (...) the latter dealing with how such application should be negotiated in the face of disagreement and/or uncertainty. It will be argued that the role of CECs is both substantive and procedural. Provided that they do not overstep their appropriate moral and professional boundaries, CECs will be shown to have an important and positive function in improving hospital care within the UK and elsewhere. (shrink)