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.

COVID-19 underscores the important role of Clinical Ethics Committees in Africa

Background The 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. Methods Twenty 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. Results Kenya 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. Conclusions This 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.

Living bioethics, clinical ethics committees and children's consent to heart surgery

This discussion paper considers how seldom recognised theories influence clinical ethics committees. A companion paper examined four major theories in social science: positivism, interpretivism, critical theory and functionalism, which can encourage legalistic ethics theories or practical living bioethics, which aims for theory–practice congruence. This paper develops the legalistic or living bioethics themes by relating the four theories to clinical ethics committee members’ reported aims and practices and approaches towards efficiency, power, intimidation, justice, equality and children’s interests and rights. Different approaches to framing ethical questions are also considered. Being aware of the four theories’ influence can help when seeking to understand and possibly change clinical ethics committee routines. The paper is not a research report but is informed by a recent study in two London paediatric cardiac units. Forty-five practitioners and related experts were interviewed, including eight members of ethics committees, about the work of informing, preparing and supporting families during the extended process of consent to children’s elective heart surgery. The mosaic of multidisciplinary teamwork is reported in a series of papers about each profession, including this one on bioethics and law and clinical ethics committees’ influence on clinical practice. The qualitative social research was funded by the British Heart Foundation, in order that more may be known about the perioperative views and needs of all concerned. Questions included how disputes can be avoided, how high ethical standards and respectful cooperation between staff and families can be encouraged, and how minors’ consent or refusal may be respected, with the support of clinical ethics committees.

Clinical ethics committees in nursing homes: what good can they do? Analysis of a single case consultation

Background: Ought nursing homes to establish clinical ethics committees (CECs)? An answer to this question must begin with an understanding of how a clinical ethics committee might be beneficial in a nursing home context – to patients, next of kin, professionals, managers, and the institution. With the present article, we aim to contribute to such an understanding. Aim: We ask, in which ways can clinical ethics committees be helpful to stakeholders in a nursing home context? We describe in depth a clinical ethics committee case consultation deemed successful by stakeholders, then reflect on how it was helpful. Research design: Case study using the clinical ethics committee’s written case report and self-evaluation form, and two research interviews, as data. Participants and research context: The nursing home’s ward manager and the patient’s son participated in research interviews. Ethical considerations: Data were collected as part of an implementation study. Clinical ethics committee members and interviewed stakeholders consented to study participation, and also gave specific approval for the publication of the present article. Findings/results: Six different roles played by the clinical ethics committee in the case consultation are described: analyst, advisor, support, moderator, builder of consensus and trust, and disseminator. Discussion: The case study indicates that clinical ethics committees might sometimes be of help to stakeholders in moral challenges in nursing homes. Conclusions: Demanding moral challenges arise in the nursing home setting. More research is needed to examine whether clinical ethics committees might be suitable as ethics support structures in nursing homes and community care.

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.

Considerazioni medico-legali sulla mozione del Comitato Nazionale per la Bioetica sull’accanimento clinico nei confronti di bambini con limitate aspettative di vita

The motion approved by the Italian National Bioethics Committee January 30th,2020, entitled “Aggressive treatments or unreasonable obstinacy in medical care of children with short life expectancy”, sets out 12 recommendations for physicians who take care of these children and have the duty to communicate with their parents. The intent of this motion is to give the family the necessary information and support during the decision-making process. Each recommendation is analytically commented. Recommendation 1 advocates the adoption of shared decision-making by the entire healthcare team; promotes the relief of pain and suffering; inhibits disproportionate and ineffective medical treatments; opposes a defensive medicine. Recommendation 2 asks for the promulgation of a national law that establishes clinical ethics committees in Children’s Hospitals. Recommendation 3 implies that parents or legal guardians should be involved in the decision-making process of physicians and clinical ethics committees. Recommendation 4 states that a second opinion may be requested by both the parents and the physicians. Recommendation 5 admits an appeal to the judge in the event of an irreconcilable conflict between the health care team and the family. Recommendation 6 endorses the medical accompaniment of the dying patient, also by means of continuous deep sedation and analgesia. Recommendation 7 enunciates the principle that patients shall have the right to access to palliative care. Recommendation 8 confirms the necessity to strengthen research focused on pediatric pain and suffering. Recommendation 9 excludes that excessive medical treatment may be justified by the need to carry out experiments or research projects. Recommendation 10 concerns the training of physician, other healthcare workers and psychologists in order to support children’s parents both emotionally and practically. Recommendation 11 exhorts to encourage the interaction between parents and seriously ill children. Recommendation 12 assigns a prominent role to parents’ associations for ill children.