Must Clinical Ethics Committees involve patients or families in their meetings?

By Dominic Wilkinson @Neonatalethics and Michael Dunn @ethical_mikey

Originally posted on PRACTICAL ETHICS

In a high court case reported last week, a judge strongly criticised a London hospital’s clinical ethics committee (CEC). The case related to disputed treatment for a gravely ill nine-year old child. There had been a breakdown in the relationship between the clinical team and the child’s parents. Prior to going to court, the clinicians had referred the case to the CEC. The committee had heard evidence from the medical professionals involved, and apparently reached consensus that further invasive life prolonging treatments were not in the child’s best interests. However, the committee had not involved the parents in the meeting. The judge found this omission striking and regrettable. She noted:

“a lack of involvement by patients and/or their families is itself an issue of medical ethics and I am most surprised that there is not guidance in place to ensure their involvement and/or participation. … the absence of any prior consultation or participation, cannot be good practice and should generally be unacceptable.”

Daniel Sokol, writing in the BMJ blog this week, has called this criticism a “wake up call” for CECs. He expressed concerns about the lack of procedural fairness and rigour in clinical ethics review and argued for a more thorough, less amateurish approach to cases – for example involving a “full and fair presentation of the critical evidence”.

There are indeed important questions of procedural fairness at stake where a clinical ethics committee is hearing evidence from only one side of a dispute. There are good reasons to gain unbiased input about the perspective of patients and families in clinical ethics meetings.

However, some of the suggestions made by the judge about how CECs should change how they work are potentially based on a mistaken conception of the function of a clinical ethics committee. And the broader idea that CECs should be conducting their business in a way that is more like a court room, with careful preparation and submission of evidence from both sides appears to be based on the idea that the aim of ethics review is to decide what should be done, and to arbitrate on what would be ethical.

Whilst there is clearly some variation, this is not typically the purpose of clinical ethics review, at least in the UK. Clinical ethics committees are different from “research ethics committees”. They do not set out to decide whether a particular course of action can proceed or not. In our view, and this is consistent with UKCEN’s statement on the ‘core competencies’ of CECs, their role is facilitative. They are tasked with providing advice and support to the clinical team who has identified an ethically challenging issue in the care of a patient for whom that team is responsible. This observation also explains why many CECs in the UK prefer to be known as Clinical Ethics Advisory Groups (CEAGs).

Thus, committee work, in so far as it relates to individual case review at least, primarily aims to help the clinicians think through the ethical considerations and their options. In some cases, clinical ethics review can help to identify ways forward that have not occurred to the clinical team. In other cases, review can help clinicians understand and come to terms with a course of action that they find troublesome or difficult. In still other cases, review can helpfully identify and rule out options that are not ethical and should not be pursued. However, ultimately any decision to proceed or not with different courses of action remains with the responsible clinicians. With these aims in mind, it is less clear that direct patient/family involvement is the right way to proceed.

Moreover, there are patient or family-centred reasons that speak against involvement of this kind. Where clinicians are in conflict with a patient and unsure of how to proceed, referring the patient to clinical ethics might in some circumstances threaten or make more adversarial an already difficult relationship.

Even in cases where there is no such conflict, drawing patients directly into the CEC process could disrupt the doctor-patient dyad and undermine established good practice in shared decision-making within the day-to-day management of patient care. There is also the very real danger that patients will misconstrue the purpose of the clinical ethics review, thinking that they need to persuade the CEC of their case, or that the committee’s role is to advocate for their interests. These risks would arise if direct approaches are adopted (e.g. patients are invited to share their views at the ethics committee meeting itself), but it will also potentially be the case if a more indirect approach is taken (e.g. if patients are invited to submit a letter, or meet personally with a CEC member, in advance of the committee meeting).

As an analogy, if a clinician were to seek advice from a clinical colleague or a subspecialist (about how to manage a particular clinical problem) we would not think that the specialist being consulted necessarily needs to speak with the patient/family.[1] We would also be rightly concerned that a further conversation of this kind could be detrimental to the patient’s understanding and experience of the care they are receiving. Another analogy: if a clinical team sought legal advice from the trust legal team, we would not expect the legal team to also receive input directly from the patient/family. The advice given to the clinicians is about their legal options and responsibilities in the situation that they are facing.

There is definitely room for improvement in the way that CECs work in the UK concerning how the perspectives of patients/family members are captured. If CECs are going to discharge their advisory role appropriately then they must be able to flesh out the ethical considerations relevant to the issue at stake accurately. In almost every scenario, this will necessitate that committee members obtain a full understanding of the issue from the patient’s standpoint, by understanding their experience, preferences and values.

We agree that CEC processes need to evolve such that this information is presented and discussed in more than a cursory or ad hoc manner. But, the focus here should be on supporting the clinical team to be better placed to give a full and accurate account of the perspectives of patients and family members. A requirement could be introduced that, when making a referral, the clinician is required to articulate the patient’s perspective in addition to, and separately from, the clinical information they provide. Any concerns about potential bias would need to be addressed in the process of gathering this information. On occasion, the advice that a committee gives to the clinical team following a case review might be limited to the observation that the team should consider obtaining further information about the patient’s perspective before the case can be discussed further.

Daniel Sokol points out some ways that clinical ethics in the UK  might improve. He noted the the lack of resources for such committees: members largely sit on them in a voluntary capacity, with variable training and experience. The NHS should be prepared to invest in CEC so that they are able to provide appropriate expertise and advice to clinicians. But it is a mistake to think that clinical ethics committees should become mini courtrooms, or serve as the ethics police. That has never been their role and it should not become so.

Dominic Wilkinson is co-chair of the Clinical Ethics Advisory Group at the Oxford University Hospitals NHS Foundation Trust. Michael Dunn is a member of the Clinical Ethics Advisory Group at the Oxford University Hospitals NHS Foundation Trust and at the Oxford Health NHS Foundation Trust. He is also a member of the Board of Trustees of the UK Clinical Ethics Network. They are writing this in a personal capacity.

[1] We thank Mark Sheehan for this example.

Competing interests: None declared.

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