Ethical advice in paediatric care

The need for local ethics advice during the COVID-19 pandemic has put a spotlight on clinical ethics committees (CECs) and services. In this review, we focus on paediatric CECs that raise both generic questions and specific issues. In doing this, we acknowledge the broader roles of education, research and staff support some bioethics teams have developed but focus on the main areas of clinical ethics support to clinical teams. We raise 12 questions about the role, remit and responsibilities of CECs, provide preliminary answers to these and set out the next steps for the development of ethics support both in paediatric practice and more generally.

Preventing moral conflicts in patient care: Insights from a mixed-methods study with clinical experts

Background and aim Healthcare professionals are regularly exposed to moral challenges in patient care potentially compromising quality of care and safety of patients. Preventive clinical ethics support aims to identify and address moral problems in patient care at an early stage of their development. This study investigates the occurrence, risk factors, early indicators, decision parameters, consequences and preventive measures of moral problems. Method Semi-structured expert interviews were conducted with 20 interprofessional healthcare professionals from 2 university hospitals in Basel, Switzerland. A Likert scale questionnaire was completed by the interviewees and analysed using descriptive and inferential statistics. Results Healthcare professionals are frequently exposed to a variety of moral problems, such as end-of-life decisions, resource allocation and assessing the patient's will or decisional capacity. Thirty-four different risk factors for moral problems are identified, e.g. patient vulnerability, divergent values or world views, inadequate resources or poor ethical climate. Twenty-one early indicators are recognised such as disagreement between healthcare professionals, patients and relatives, emotional disturbances, gut feeling or conflict of conscience. A variety of preventive measures are suggested and presented in a preventive clinical ethics support process model. The most helpful measures are early ethical conversations with colleagues, early team-internal ethical case discussions and an ethics-trained contact person on the ward. Ethics training, kerbside consultations, proactive ethics consultations, ethics screening and rounds are also considered helpful. Conclusions Clinical ethics support services should not only offer reactive and complex, but also proactive and low-threshold support for healthcare professionals, patients and relatives.

Clinical ethics support services during the COVID-19 pandemic in the UK: a cross-sectional survey

BackgroundThe COVID-19 pandemic highlighted the need for clinical ethics support provision to ensure as far as possible fair decision making and to address healthcare workers’ moral distress.PurposeTo describe the availability, characteristics and role of clinical ethics support services (CESSs) in the UK during the COVID-19 pandemic.MethodA descriptive cross-sectional online survey was developed by the research team. The survey included questions on CESSs characteristics (model, types of support, guidance development, membership, parent and patient involvement) and changes in response to the pandemic. Invitations to participate were widely circulated via National Health Service institutional emails and relevant clinical ethics groups known to the research team.ResultsBetween October 2020 and June 2021, a total of 53 responses were received. In response to the pandemic, new CESSs were established, and existing provision changed. Most took the form of clinical ethics committees, groups and advisory boards, which varied in size and membership and the body of clinicians and patient populations they served. Some services provided moral distress support and educational provision for clinical staff. During the pandemic, services became more responsive to clinicians’ requests for ethics support and advice. More than half of respondents developed local guidance and around three quarters formed links with regional or other local services. Patient and/or family members’ involvement in ethics discussions is infrequent.ConclusionsThe pandemic has resulted in an expansion in the number of CESSs. Though some may disband as the pandemic eases, the reliance on CESSs during the pandemic demonstrates the need for additional research to better understand the effectiveness of their various forms, connections, guidance, services and modes of working and for better support to enhance consistency, transparency, communication with patients and availability to clinical staff.

Moral Competence, Moral Teamwork, Moral Action – Outcomes of Moral Case Deliberation in the Euro-MCD 2.0 For Evaluating Clinical Ethics Support

"Background: For Moral Case Deliberation (MCD), like any form of Clinical ethics support (CES), it is important to know whether it reaches its presumed goal of supporting healthcare professionals in their ethical challenges. Evaluation is needed to gain insight in the value of MCD. Therefore, the Euro-MCD instrument was developed to assess outcomes of MCD, and has now been revised. The aim of this presentation is to present the revised Instrument: the Euro-MCD 2.0. Methods: The revision process was an iterative dialogue in which field study findings were integrated with theoretical reflections and expert-input. Results: The Euro-MCD 2.0 has three domains: 1) Moral Competence, 2) Moral Teamwork and 3) Moral Action. Moral Competence includes items on moral sensitivity, analytical skills and a virtuous attitude, like ‘I speak up in ethically difficult situations’. Moral Teamwork refers to open dialogue and supportive relationships, for example ‘We feel secure to share emotions in ethically difficult situations’. Moral Action includes items about moral decision-making and responsible care, like ‘We are able to explain and justify our care towards patients and their families’. Discussion: The Euro-MCD 2.0 is shorter and more strongly substantiated by empirical data and theoretical reflections. At the conference, we will reflect on the revision process and the underlying foundations of the domains. The revised instrument helps to get insight in the MCD related outcomes for healthcare professionals in their daily practice. Our research can further improve implementation of MCD and contribute to the research field of evaluation of CES in general. "

Developing Organisational Diversity Statements through Dialogical Clinical Ethics Support: The Role of the Clinical Ethicist

"In increasingly pluralist societies, stakeholders in healthcare do not always share a common moral perspective on health, wellbeing or good care. Growing cultural, religious, and sexual diversity among both patients and healthcare professionals (HCPs) require healthcare organizations to address these differences and to engage in inclusive and equitable practices. Addressing diversity, however, comes with inherent moral challenges. For example, regarding how to deal with healthcare disparities between minoritized and majoritized patients. Additionally, increasing diversity in the workforce means that HCPs moral perspectives on ‘good care’ are diversifying. Developing diversity statements is an important strategy for healthcare organizations to define their normative ideas, values, and approaches to both care and diversity. To tackle concerns of exclusion and power differences, and to ensure that these statements reflect a common ground among HCPs, healthcare organizations ought to develop diversity statements in an inclusive and participatory way. Clinical ethics support (CES) services and interventions such as Socratic Dialogues can be employed to help healthcare organizations to do so. In this presentation, we (1) argue for taking a participatory approach when supporting healthcare organisations in developing diversity statements, (2) report both on the content and the process of developing a diversity statement through CES and Socratic Dialogues, and (3) maintain that CES that supports processes of joint reflection and learning among stakeholders can be used in such an approach. We will use a case example from practice to illustrate our point. We conclude with several recommendations regarding a participatory CES approach for developing diversity statements. "

Blind Spots Reconsidered – Epistemic Injustice in Clinical Ethics Support

"Conducting ethical case discussions is a core aspect of any clinical ethics support service or work as an ethical consultant in a hospital. Numerous case discussion methods can be used to do this, many of which are based on Beauchamp and Childress’ four biomedical principles. Other commonly used types are the ‘moral case deliberations’ by prominent authors such as Widdershoven, Molewijk et al. However, based on our practical work as clinical ethicists, and doctoral students in the field of clinical ethics, we would like to hypothesize that most of the methods seem to be in need of philosophical supplementation, especially on the blind spots regarding the is-ought fallacy, i.e. how to relate empirical data to normative conclusions. A further weakness may be found in the inadequate handling of power structures, which may lead to an unjust handling of opinions. In our talk, we will therefore present Miranda Fricker’s conceptual idea of ‘epistemic injustice’ and we will apply these insights to clinical cases of our everyday practice. Epistemic injustice is injustice related to knowledge. The concept focuses on exclusion and silencing people in public discourse. This silencing leads to a systematic distortion or misrepresentation of one’s meanings or contributions and/or to an undervaluing of someone’s status in communicative practices. We think that this concept has not been considered in clinical ethics thus far, and we would like to discuss whether ethical case discussions should not help to avoid epistemic injustice. If so, then the case discussion methods of our discipline should be adapted accordingly. "

Challenging misconceptions about clinical ethics support during COVID-19 and beyond: a legal update and future considerations

The pace of change and, indeed, the sheer number of clinical ethics committees (not to be confused with research 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 ([2020] EWHC 1958 (Fam), [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.

The Role of Worldview in Moral Case Deliberation: Visions and Experiences of Group Facilitators

This study investigates the role of worldview in moral case deliberation (MCD). MCD is a form of clinical ethics support which aims to assist caregivers in reflection on moral dilemmas, experienced in daily practice. Bioethicists acknowledge that existential and religious aspects must be taken into account in the analysis of ethical questions, but it remains unclear how these elements are addressed in clinical ethics support. We investigated how facilitators of MCD address worldview in MCD. MCD facilitation is often done by spiritual caregivers, but not in their role as spiritual caregiver. Discussing worldview is no standard part of the procedure in MCD. This study was qualitative, focusing on the views and experiences of the facilitators of MCD. Semi-structured interviews (N = 12) were conducted with facilitators of MCD. Grounded theory was used for analysis. The results show that worldview plays both an explicit and an implicit role in the MCD process. The explicit role concerns the religious beliefs of patients and professionals. This calls for avoiding stereotyping and devoting attention to different visions. The implicit role comes to the fore in addressing core values and spiritual fulfillment. In order to clarify the fundamental nature of values, more explicit attention for worldview might be useful during MCD. However, this should be done with caution as the term ‘worldview’ might be interpreted by participants in terms of religious and personal beliefs, rather than as an invitation to reflect on one’s view of the good life as a whole.

Perceptions of important outcomes of moral case deliberations: a qualitative study among healthcare professionals in childhood cancer care

Background In childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for clinical ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe the MCD-related outcomes that healthcare professionals in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden. Methods This study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content validated European MCD Outcomes Instrument, before participating in regular MCDs. Answers to the main open-ended question, included in the questionnaire, was analysed according to systematic text condensation. Results Data was collected from 161 responses from the healthcare professionals. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows: Interprofessional well-being in team interactions on a team level; Professional comfort when dealing with moral challenges on a personal level; and Improved quality of care for the child and the family on a care level. Conclusions Healthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then create relevant working conditions for clinical ethics support.