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)

BackgroundThe COVID-19 pandemic has magnified pre-existing challenges in healthcare in Africa. Long-standing health inequities, embedded in the continent over centuries, have been laid bare and have raised complex ethical dilemmas. While there are very few clinical ethics committees (CECs) in Africa, the demand for such services exists and has increased during the COVID-19 pandemic. The views of African healthcare professionals or bioethicists on the role of CECs in Africa have not been explored or documented previously. In this study, we aim (...) to explore such perspectives, as well as the challenges preventing the establishment of CECs in Africa.MethodsTwenty healthcare professionals and bioethicists from Africa participated in this qualitative study that utilized in-depth semi-structured interviews with open-ended questions. Themes were identified through thematic analysis of interviews and open-ended responses.ResultsKenya and South Africa are the only countries on the continent with formal established CECs. The following themes emerged from this qualitative study: (1) Lack of formal CECs and resolution of ethical dilemmas; (2) Role of CECs during COVID-19; (3) Ethical dilemmas presented to CECs pre-COVID-19; (4) Lack of awareness of CECs; (5) Lack of qualified bioethicists or clinical ethicists; (6) Limited resources to establish CECs; (7) Creating interest in CECs and networking.ConclusionsThis study illustrates the importance of clinical ethics education among African HCPs and bioethicists, more so now when COVID-19 has posed a host of clinical and ethical challenges to public and private healthcare systems. The challenges and barriers identified will inform the establishment of CECs or clinical ethics consultation services (CESs) in the region. The study results have triggered an idea for the creation of a network of African CECs. (shrink)

The pace of change and, indeed, the sheer number of clinical ethics committees has accelerated during the COVID-19 pandemic. Committees were formed to support healthcare professionals and to operationalise, interpret and compensate for gaps in national and professional guidance. But as the role of clinical ethics support becomes more prominent and visible, it becomes ever more important to address gaps in the support structure and misconceptions as to role and remit. The recent case of Great Ormond Street Hospital for Children (...) NHS Foundation Trust v MX, FX and X, [21]–[23] and [58]) has highlighted the importance of patient/family representation at clinical ethics committee meetings. The court viewed these meetings as making decisions about such treatment. We argue that this misunderstands the role of ethics support, with treatment decisions remaining with the clinical team and those providing their consent. The considered review by clinical ethics committees of the moral issues surrounding complex treatment decisions is not a matter of determining a single ethical course of action. In this article, we consider current legal understandings of clinical ethics committees, explore current concepts of ethics support and suggest how they may evolve, considering the various mechanisms of the inclusion of patients and their representatives in ethics meetings which is not standard in the UK. (shrink)

In order to build on the information that was obtained in the course of the first study, a follow-up survey was conducted first by phone and subsequently in a written form between August and October 2014. We contacted 1.858 hospitals in all of Germany for the follow-up survey by phone. In cases where a hospital had not participated in the first study, the willingness to participate in the follow-up survey was established in advance. The survey’s dispatch was ensured in the (...) case of acceptance. The same structured survey was used as a research tool. The data of the first study and the follow-up survey were merged and evaluated. 654 surveys could be evaluated altogether. Our survey by phone revealed that 912 hospitals in all of Germany have at least one form of clinical ethics consultation available. The health care ethics committee is the most frequently implemented structure of clinical ethics consultation. The implementation of clinical ethics consultation is dependent on sponsorship and hospital size. Recommendations to deliver structures of clinical ethics consultations have a smaller influence on the implementation compared to the certification by KTQ respectively proCum Cert. The rate of implementation in regard to the structures of clinical ethics consultation has steadily increased for years. The establishment of clinical ethics consultation in German hospitals should be further promoted. It would be desirable further to develop suitable juridical regulations in order to implement clinical ethics consultation as well as structural parameters. (shrink)

There is an increasing need for quality in ethics consultations, though there have been significant achievements in the United States and Europe. However, fundamental concerns that place the profession in jeopardy are discussed from the perspective of the U.S. in a manner that will be helpful for other countries. The descriptive component of the essay (the first two points) explains the achievements in ethics quality (illustrated by the IntegratedEthics program of the Veterans Health Administration) and the progress on standards and (...) competencies for ethics consultations (represented by the Core Competencies of the American Society for Bioethics and Humanities). Based on these achievements, the analytical component of the essay (the final three points) identifies and seeks to resolve three fundamental concerns (with increasing levels of importance) that compromise quality in ethics consultations: standards of quality; professionalism; and credentialing. The analysis argues for clearer standards of quality in ethics consultation and urges further professionalism by explaining the need for the following: interpreting the ASBH core competencies in a normative manner, developing a Code of Ethics, and clarifying the meaning of best practices. However, the most serious concern that threatens quality in ethics consultations is the lack of a credentialing process. This concern can be resolved effectively by developing an independent Ethics Consultation Accreditation Council to accredit and standardize graduate degree programs, fellowship experiences, and qualifying examinations. This credentialing process is indispensable if we are to strategically enhance quality in ethics consultations. (shrink)

Deliberative ways of dealing with ethical issues in health care are expanding. Moral case deliberation is an example, providing group-wise, structured reflection on dilemmas from practice. Although moral case deliberation is well described in literature, aims and results of moral case deliberation sessions are unknown. This research shows (a) why managers introduce moral case deliberation and (b) what moral case deliberation participants experience as moral case deliberation results. A responsive evaluation was conducted, explicating moral case deliberation experiences by analysing aims (...) (N = 78) and harvest (N = 255). A naturalistic data collection included interviews with managers and evaluation questionnaires of moral case deliberation participants (nurses). From the analysis, moral case deliberation appeals for cooperation, team bonding, critical attitude towards routines and nurses’ empowerment. Differences are that managers aim to foster identity of the nursing profession, whereas nurses emphasize learning processes and understanding perspectives. We conclude that moral case deliberation influences team cooperation that cannot be controlled with traditional management tools, but requires time and dialogue. Exchanging aims and harvest between manager and team could result in co-creating (moral) practice in which improvements for daily cooperation result from bringing together perspectives of managers and team members. (shrink)

This paper attempts to draw on management theory and practice and, more specifically, on know-how from the study of teamwork, to seek insights into enhancing the effectiveness of hospital ethics committees and clinical ethics committees (CECs), with the aim of contributing to heath-care organizations’ effective and efficient decision-making and operation. Based on an analysis of the obstacles that stand in the way of ethics committees’ (ECs’) efficient functioning, five specific conditions for EC success are brought forth. A couple of practical (...) tools for their attainment are proposed. The article suggests that the construction of those committees, as well as the working procedures that may render them effective, should be flexible and made adaptable to the specific assignment or case, which is dealt with by that committee, at the time; and that the optimal set of procedures to adopt, throughout the working sessions of ECs, are those which will gear the committee with the means to contribute to the eventual materializing and finalization of a quality and practical set of decisions; for the benefit of patients, their families, health-care organizations and the community, alike. (shrink)

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)

In the UK an increasing number of Clinical Ethics Committees (CECs) have been developed mainly in response to local need and interest. Their functions include education of health professionals, of policy and guideline development, and case review (both retrospective analysis of topics and advice on acute cases). The UK Clinical Ethics Network, a charitable foundation provides CEC s with help, support and advice and enables them to share their experience The legal status of UK CECs is unclear but some legal (...) commentators have suggested that CECs lack competencies and procedural rules necessary for acute case review. The UKCEN has proposed core competencies for CECs that lists the ethical, operational and procedural skills, knowledge and personal attributes required and how they may be acquired, assessed and maintained. Their implementation might lead to the development of ethical and legal governance which should benefit to future patient care. (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)

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)

This paper examines the role of clinical ethics committees (CECs) in infertility clinics in the UK, focusing on whether they usefully support infertility clinicians' ethical decision-making. The overall aim of the study reported here was to investigate how infertility clinicians approached and handled ethical problems in their everyday practice and this paper reports on one aspect of these data – what they thought about the use of CECs. This paper gives an overview of what arrangements there are for such committees (...) in infertility clinics; considers why the clinicians used CECs; and examines how these committees provided a useful function in the infertility setting and contributed to making ‘good’ ethical decisions. Finally, the paper examines how the form of ethics support can be developed and strengthened, and concludes with recommendations for a particular model of CECs in infertility units – a designated CEC for each infertility unit. (shrink)

This case report illustrates the ethical issues involved in paediatric liver transplantation, especially in terms of assessing recipient suitability and the role of parents as donors. Ms. X was a child with advanced chronic liver disease who undergone an elective living donor liver transplant with her father as the donor. Post-operatively, she was in a critically ill state as a result of acute liver graft failure with resultant multi-organ dysfunction. A re-transplant was done at 36 hours after the first one, (...) this time with her mother as the donor. She responded well to the transplant, however by post-operative day 8, it was evident that she had features of severe brain stem dysfunction and brain death was subsequently certified. The ethical issues that arise from this case, including the need for careful assessment of recipient suitability for a transplant and the specific considerations of using parents as organ donors, are discussed. (shrink)

BackgroundClinical Ethics Support Services have been established to support healthcare professionals in addressing ethically sensitive issues in clinical practice and, in many countries, they are under development. In the context of growing CESS, exploring how healthcare professionals experience and address clinical ethics issues in their daily practice represents a fundamental step to understand their potential needs. This is even more relevant in the context of extremely sensitive diseases, such as cancer. On this basis, we carried out a qualitative study conducting (...) in-depth semi-structured interviews with stakeholders of a major comprehensive cancer centre in Italy, with the twofold aim of investigating what ethical issues arise in the context of clinical oncology and how they are addressed, as well as stakeholders’ expectations about a potential CESS to be implemented within the Institution.MethodsThe study was conducted within the theoretical framework of Grounded Theory. Participants were healthcare professionals and other key stakeholders working within the cancer centre. The semi-structured interview aimed at exploring common ethical aspects of oncology, investigating stakeholders’ professional experience in dealing with clinical ethics issues, their expectations and requests regarding ethics support services. Transcripts of the interviews were coded and analysed according to the principles of Grounded Theory.ResultsTwenty-one stakeholders were interviewed. Our analysis showed a wide consensus on the identification of ethically relevant issues, above all those concerning communication, end-of-life, and resource allocation. The absence of institutional tools or strategies to address and manage ethical issues at the patient bedside emerged, and this is reflected in the widespread request for their development in the future. The ideal support service should be fast and flexible in order to adapt to different needs and clinical cases.ConclusionsThe interviewees showed a limited degree of ‘ethical awareness’: despite having reported many issues in clinical practice, they could hardly identify and describe the ethical aspects, while complaining about a lack of ethical resources in their management. To build a truly effective support service, it therefore seems appropriate to take such context into consideration and address the emerged needs. Ethical sensitivity seems to be key and it becomes even more relevant in critical clinical areas, such as the therapeutic pathways of terminally ill patients. (shrink)

BackgroundCritical Incident Reporting Systems (CIRS) provide a well-proven method to identify clinical risks in hospitals. All professions can report critical incidents anonymously, low-threshold, and without sanctions. Reported cases are processed to preventive measures that improve patient and staff safety. Clinical ethics consultations offer support for ethical conflicts but are dependent on the interaction with staff and management to be effective. The aim of this study was to investigate the rationale of integrating an ethical focus into CIRS.MethodsA six-step approach combined the (...) analysis of CIRS databases, potential cases, literature on clinical and organizational ethics, cases from ethics consultations, and experts’ experience to construct a framework for CIRS cases with ethical relevance and map the categories with principles of biomedical ethics.ResultsFour main categories of critical incidents with ethical relevance were derived: (1) patient-related communication; (2) consent, autonomy, and patient interest; (3) conflicting economic and medical interests; (4) staff communication and corporate culture. Each category was refined with different subcategories and mapped with case examples and exemplary related ethical principles to demonstrate ethical relevance.ConclusionThe developed framework for CIRS cases with its ethical dimensions demonstrates the relevance of integrating ethics into the concept of risk-, quality-, and organizational management. It may also support clinical ethics consultations’ presence and effectiveness. The proposed enhancement could contribute to hospitals’ ethical infrastructure and may increase ethical behavior, patient safety, and employee satisfaction. (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)

Background: Advances in biomedical sciences, technologies and care practices have resulted in an increase in ethical problems and a resulting growth of difficulties encountered by health workers in their professional activity. Objective: The main objective of this study was to analyse knowledge in the ethical field and experience with and the propensity for using ethics consultations by nurses and physicians. Methods: Between March and June 2014, a cross-sectional observational study was conducted on a sample of 351 nurses and 128 physicians (...) in four central Italian hospitals. For data collection, a semi-structured questionnaire was used, consisting of 21 items divided into four sections exploring demographic and occupational characteristics, knowledge in the ethics field, experience with ethical issues and the propensity to use ethics consultation. Ethical considerations: Research ethics approval was obtained from the Italian Nurses Professional Board. Results: The results show that both nurses and physicians are faced with ethically sensitive situations. Nurses were found to have better judgement concerning their own knowledge than physicians, but more physicians were found to have a deeper level of specific training in ethics issues. The propensity to ask for ethics consultations to address ethical issues was found to be significantly associated with the degree to which ethical issues have deepened. Conclusion: The presence of a consulting service that can lead to shared choices may represent, together with basic and continuing education, a valid support for professional growth in the ethical field for both physicians and nurses. (shrink)

Live broadcasts of surgical procedures are most common at professional conferences, but they are not uncommon in the wider public arena, with operations having recently been transmitted in realtime on public television in the UK. This phenomenon raises ethical concerns familiar from the professional context, along with some distinct considerations which merit further attention. In this article I aim to examine the issues in terms of patient autonomy, patient welfare and the public interest. Prompted by the interest recently expressed by (...) the Royal College of Surgeons of England, under each topic I pose a series of questions, before closing with a call for enhanced ethical oversight, such as might be afforded by a clinical ethics committee. (shrink)

Law’s processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts’ decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts’ apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article (...) explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services – and into generalist ethics support services – in order to gauge whether this is indeed a promising development. (shrink)

Ethical difficulties arise in healthcare practices. However, despite extensive research findings that demonstrate that most nurses are involved in recurrent ethical problems, institutions are not always able to effectively support nursing care professionals. The limited availability of ethics consultation services and traditional nursing training fails to meet the frequent and strong requests by health workers to support their ethical dilemmas. A questionnaire was administered to 374 nurses attending a specialist training and a lifetime learning programme in Italy. The respondents reported (...) a high frequency of ethically sensitive situations, and they described the poor development of ethics support and a scarcity of ethics training programmes. The results suggest the importance of promoting ethics services that include consultation and ethics training. A need for systematic ethics educational activities was identified for improving the capacity of nurses to manage ethical issues in patient care. (shrink)