By Joe Brierley, David Archard and Emma Cave.

Clinical ethics support has adapted to embrace patient-centred care, to help clarify ethical matters in patient care and to occasionally help resolve disputes without recourse to the courts. The pace of change and, indeed, the sheer number of clinical ethics committees accelerated during the first wave of 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. In our recent article we set out several misconceptions. In this blog we focus on two of the most pressing issues and their legal provenance and implications: the nature of ethical advice and the relevance of patient representation in case consultations.

The nature of ethical advice

There is a paucity of research on the range of functions adopted by diverse ethics support teams such as clinical ethics committees (CECs) and ethical advisory groups. They increasingly provide training on ethical and legal matters; sessions to combat moral injury to the healthcare workforce –a significant risk during the COVID-19 pandemic; and undertake research into bioethical issues. Some have produced frameworks and operational guidance in response to ethical dilemmas posed by the pandemic. Many also undertake case consultations, providing valuable advice to clinicians whether by making non-binding recommendations, indicating some ethically proper choices or indeed identifying ethically problematic options.

In 2009 Doyal and Doyal emphasised that CECs are ‘advisory rather than directive’ but the current relevance of this assertion is called into question by two recent developments. The first is COVID-19 guidance from the Royal College of Physicians which references medical ethicists providing stakeholders with a route to ‘external appeal other than a second opinion’, which seems suggestive of a decision that goes beyond mere advice.  The second is the recent High Court decision of Great Ormond Street Hospital for Children NHS Foundation Trust v MX, FX and X (MX), where Russell J gave weight to the CEC view as though it was decisional rather than advisory. We argue that this misunderstands the role of ethics support, with treatment decisions remaining with the clinical team and those that provide, or do not, their consent to what has been offered. Moreover, the considered review by ethics teams of the moral issues surrounding complex treatment decisions are not a matter of determining a single ethical course of action.

An important practical implication of legal uncertainty as to the nature of ethical advice relates to indemnity arrangements for ethics support groups. They are arguably unnecessary as long as ethics teams neither provide care for patients nor make decisions about their treatment. If their role is to change in light of MX, and given the increasingly controversial and contested nature of the cases committees are being referred, one emerging issue is the public reputation of those members who are readily identifiable. Many are lay members without other professional representation, and even for the clinicians on ethics teams, their defence unions do not usually consider such work within their remit. Hospital legal teams, whilst often very helpful, have their primary responsibility in representing the hospital, as do any communication team. Furthermore, the funding of any indemnity insurance for an entire team may well be costly and therefore unattractive for hospitals, and potentially a disincentive to future members.

The relevance of patient representation

In MX, Russell J further opined that patients, or with younger children their parents, ought to have the opportunity to attend ethics meetings. If widely adopted this would require many ethical support groups to change their approach. Patient representation at case consultations is unusual outside the committee referred to in the MX case. (UKCEN survey 2020, and ULCEN 2017 annual meeting)

If ethics committees were constituted as decision-making bodies then it would be important to recognise the right of patients (or, if the patient lacks capacity the family) to be consulted about certain decisions, as held by the Court of Appeal in Tracey. If, notwithstanding MX, and in common with current practice they are not decision-making bodies, then the legal requirement for patient representation is less clear.

If the CEC role is advisory then there is still a strong case for patient representation. But important questions must be answered as to what format should this take. Considering ethics meetings, the possibilities consist of a right to attend; a routine invitation to meetings unless there is a clear – and communicated – reason; a right to enter a written statement/video recording. There is also the consideration about whether attendance is for all or only for a specific part of any meeting, and of whether patients/representatives are notified of the meeting and/or notification of outcome.

Overarching guidance about the optimal, and expected, process ought to be provided by a supervisory body so that the diverse bioethics teams can aim to meet the minimal standards and secure the resources to do so, as well as to inform patients about the role of ethics support.

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

Authors: Joe Brierley¹, David Archard² and Emma Cave³

Affiliations:

1 Paediatric Bioethics Centre, National Institute for Health Research, Great Ormond Street Hospital Biomedical Research Centre, London

2 School of History, Anthropology, Philosophy and Politics, Queen’s University, University Road, Belfast

3 Durham Law School, Stockton Road, Durham University, Durham

Competing interests: JB and DA are part of the Great Ormond St Paediatric Bioethics Centre

Social media accounts of post authors: @brierl_jb