Must Clinical Ethics Committees Involve Patients or Families in their Meetings?

By Dominic Wilkinson @Neonatalethics and Michael Dunn @ethical_mikey

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 UK Clinical Ethics Network’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 in some cases 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 further ways that clinical ethics in the UK  might improve. He laments 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.

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6 Responses to Must Clinical Ethics Committees Involve Patients or Families in their Meetings?

  • Daniel Sokol says:

    I am grateful to the authors for their thoughtful observations on the BMJ article. I have a few remarks on their response.

    The authors wrote:

    ‘there are good reasons to gain unbiased input about the perspective of patients and families in clinical ethics meetings.’
    […]
    ‘In almost every scenario, this [discharging the committee’s advisory role] will necessitate that committee members obtain a full understanding of the issue from the patient’s standpoint, by understanding their experience, preferences and values.’

    The proposed solution:

    ‘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.’

    How can this presentation be unbiased if it comes from the pen or lips of the referring clinician? How can the Committee be confident that this is a full and accurate reflection of the patient’s experience, preferences and values? It is hearsay evidence from a party with ‘skin in the game’.

    If the authors believe that committee members should obtain a “full understanding of the issue from the patient’s standpoint”, then is there any other option than to hear from the patient directly, whether in the form of a written statement and/or oral evidence at the meeting?

    CECs should not become mini courtrooms, but neither should they be amateurish in the way they give advice in complex and contentious matters, especially if NHS Trusts start referring to the CEC’s recommendations as supportive evidence in court proceedings.

    • Dominic Wilkinson says:

      Hi Daniel,

      thanks for your comments.

      Here is another analogy, which I think clarifies the different role that a clinical ethics committee often plays.

      John has been having relationship difficulties with his long-term partner, Jules. They have been struggling in recent times to communicate and John feels that his partner is being unfair and unreasonable. John speaks to his psychotherapist, Sarah and asks her for relationship advice.
      Sarah spends some time listening to John. She asks John some open questions, encouraging him to think about how Jules might be feeling. She encourages John to reframe his problems and to see connections between these difficulties and problems he has had elsewhere. She discusses different options that John could pursue, prompting him to explore ways of improving communication, avoid conflict and find constructive ways forward.

      In a case like the one above, the counsellor provides relationship advice in a way that parallels the sort of advice that clinical ethics committees frequently need to. The counsellor, Sarah, will listen impartially to John’s relating of the relationship problems. She will be interested in understanding Jules’ perspective, but it would not be necessary for her to seek out Jules or ask him to come and see her. She would know that she is hearing one point of view on the relationship, and would be aiming to help John to review the way in which his perspective may not be the only correct one.

      Of course, Sarah, could invite Jules to come and see her and provide his point of view. But if she were to do that, she would be doing something different from what she had been asked to do – she would be offering relationship therapy and not personal counselling. As a parallel, mediation in cases of conflict in medical decision-making (like the Great Ormond St case) aims to do this. However, a mediator or relationship counsellor would not be providing advice to either party – they would be aiming to be completely neutral.

      Another possibility, would be for Sarah to listen to both parties and to try to arbitrate the dispute – for example, settling the question of who was in the right and who in the wrong, dealing with problems of disputed ownership and making a decision about how child care responsibilities should be divided. But in that case, Sarah would no longer be providing relationship advice, she would be acting as a magistrate.

      Clinical ethics committees often provide ethical advice and counselling. They may sometimes veer into providing mediation – though that is a separate goal, and in many cases it is better for that to be provided by a professional trained mediator who is completely neutral (ie not consisting of staff from the hospital). Ethics committees might, in some cases, take on a role of arbitration. In such cases, they would need to adopt a different approach to hearing evidence and their conclusions would have a different function.

      There is an important question about how ethics committee should deliberate if they know that their reasoning may be presented to a court, and also how their findings should be presented. I am going to set that question aside for now – though we will hope to explore it in a longer article.

      cheers
      Dom

  • Julian Savulescu says:

    I agree with Dom and Mikey that ethics committees need not necessarily involve parents. For example, if they are outlining ethical principles, procedures or consepts that clinicians apply. But in this case “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.” I have not read the judgement but my understanding from a superficial reading of the press is that the judge felt that this view was based on quality of life assessments that did not include the perspective of parents.

    I can see how this might not need the input of parents – for example the child is permanently unconscious. But in other cases, it will be relevant to hear the perspective of the parents on the quality of life of the child. Can you tell us a bit more about the precise facts of this case – if the ethics committee’s judgement was based on quality of life considerations, why weren’t the parents’ views considered?

  • Vic Larcher: Joe Brierley says:

    It seems clear that Daniel Sokol’s(DS) recent opinion piece ‘a wakeup call for clinical ethics committees’ and the responses from Mikey Dunn (MD), Dominic Wilkinson (DW) and Julian Savulescu (JS) raise important questions about the form, function, procedural fairness and rigour of the Clinical Ethics Committee (CEC) model of provision of clinical ethical review, advice and support. As others have pointed out, the opinion piece, which was based on judicial comments in a recent particularly challenging case, requires challenge because of the misleading perspective of ethical review that it presents.

    The essential clinical circumstances of the case, as set out in the judgement, are in the public domain and not disputed. However, as JS has observed, in this and in other cases which have attracted intense public attention and media scrutiny, the facts concerning the referral to clinical ethics committees are not routinely disclosed, presumably because of the legal and ethical duty to respect confidentiality. This duty applies as much to the process of ethical review as it does to the disclosure of other personal information, unless there is a compelling public interest for disclosure. It therefore seems to us somewhat problematic to use judicial comments in any particular case as a springboard for more generalised criticism of the procedural fairness and rigour of clinical ethics review. However, such comments have been made before.

    Fundamental to the understanding of clinical ethics review is the acknowledgement that its function is intended to be one of analysis, clarification and formulation of the ethical issues surrounding particularly challenging cases of the type regularly seen at highly specialised hospitals, such as Great Ormond Street. Few cases involve decisions to limit life-sustaining treatment in desperately ill children, in many the dilemmas involve the compassionate use of innovative or experimental treatments outside the mandate of Research Ethics Committees, issues with capacity in young people or the long-term provision of community parenteral nutrition.

    In all these scenarios, where stakes and expectations are high, both professionals and parents may seek help and support in confronting ethical dilemmas. It is essential to recognise that offering an ethical opinion to a clinician-or indeed a parent- who requests it is not the same as acting as an expert witness to a court. Clinical ethics review is not, and never has been, a quasi-judicial process and to conflate the two is as unhelpful as it is misleading. If anything, courts have accepted clinical ethics review, together with the involvement of mediation and other services, as a prequel to court proceedings.

    The process of clinical ethics review has evolved since the inception of UK CECs in the mid-1990s. Committees now routinely have both professional and independent lay members, including previous patients/parents, from a wide range of disciplines; some have a high percentage of members with higher academic qualifications in ethics as well as considerable practical expertise.Over time, many committees will have reviewed and revised their procedures and practice in accordance with the principles of procedural fairness and clinical governance.The core competencies required individually and collectively for members and committees undertaking clinical ethics reviews have been published and supported by the UK Clinical Ethics Network.

    Many CECs/Clinical Ethics Advisory groups/ Bioethics Services will have extensively discussed the pros and cons of parental attendance along the lines DW & MS have detailed and may have struggled to reach a conclusion. Nonetheless, understanding the wishes, preferences, beliefs and values of patients,(or in the case of children, those with the legal authority for decision-making on the child’s behalf),is vital in helping analyse and clarify the ethical dilemmas on which advice is sought. As DW has pointed out, this function must be achieved without straying into the areas of relationship counselling or mediation, or the territory rightly occupied by the Court. One important point to emphasise is that ethical review does not presuppose that there is a solution to be had, though the process of analysis and clarification may facilitate a solution that satisfies ethical principles. Alternatively, it may assist in the early identification of those cases where independent mediation or legal intervention is necessary.

    One possible solution involves a multi-stage approach in which clinicians meet with members of the Ethics service (however designated or configured) to present and clarify their ethical dilemma. In the second stage, one or two members of the clinical ethics service could meet with patients/parents+/- child to clarify and understand their wishes, preferences, beliefs and values, and their expectations. In the third stage, the parental perspectives could be fed back to a joint meeting between the ethics service and referring clinicians so that parental views were represented in the process and contributed to the production of advice.

    Other approaches are, of course, possible. One that is in current usage, including by our team, involves parental briefing before ethics review, parental support by PALS or others during discussions, and post review debriefings. Considered ethical review,with the provision of considerable clinical details, reports of multidisciplinary meetings and relevant scientific papers for participants is both time and resource consuming. It is certainly not over in a few minutes as DS implies.

    It is not clear which of these approaches might be most effective in addressing the ethical dilemmas raised in the most challenging cases, e.g. those involving the care of seriously ill children.

    DS is of course right in saying that the system is amateur- if by that he means that the service is usually provided as a free good by members who are not paid by the Trust. This apparent anomaly may enhance the independence and intellectual integrity of the UK CECs to provide unbiased, ethical support and advice. The potential downside is that, in stark contrast to the US system, in the UK ethics committees are not mandatory, and ethics support not usually funded, despite its acknowledged importance in complex decision making. As all have pointed out,this situation is problematic.

    There is a further problem with the provision of clinical ethics support in the current climate, where technological advances, greater expectations as to what medicine can deliver, and resource constraints pose increasing ethical dilemmas over the care of the sickest in our society. These dilemmas attract increasing publicity and comment, arising as they do in the context of burgeoning social media use, along with other platforms for sharing views and mobilising public opinion. Additionally, the rise of populism has led to the questioning of the value and provenance of experts and expertise as an elitist construct, in which the views of the general public are excluded or ignored. Ethical review and the work of ethics committees have not been immune from this kind of criticism which has included concern over lack of openness and accountability.However, despite the need for transparency,there are difficulties in showing the workings of the process, in part due to the duty of confidentiality. This needs more detailed debate than possible here.

    Constructive criticism intended to improve the provision of Clinical Ethics support is, of course, to be welcomed. However, comments should be based on an up to date knowledge of facts, be fair and open to challenge. So many of the comments made regarding recent high-profile cases involving desperately ill children and their loving families have not fulfilled CP Scott’s remarks on the subject of the criteria necessary for ethical comment. On the occasion of the centenary of “the Guardian” of almost 100 years ago he wrote:
    “Comment is free, but facts are sacred. “Propaganda”, so-called, by this means is hateful. The voice of opponents no less than that of friends has a right to be heard. Comment also is justly subject to a self-imposed restraint. It is well to be frank; it is even better to be fair. This is an ideal. Achievement in such matters is hardly given to man. Perhaps none of us can attain to it in the desirable measure. We can but try, ask pardon for shortcomings, and there leave the matter.”

    It is unfortunate if comments and criticisms that do not fulfil these criteria impede what is surely required: namely provision of resources to deliver high-quality clinical ethics services throughout the NHS, as well as what we agree is necessary governance and professionalism. Ethics support should be readily and rapidly available for those who need it, whether professionals or patients and their families and the need will only continue to grow in these uncertain times.

    Vic Larcher is a retired Consultant Paediatrician. He was formerly chair of the Great Ormond Street Clinical Ethics Committee and a Trustee of the UK Clinical Ethics Network
    Joe Brierley is an intensivist and bioethicist at Great Ormond St, former Trustee of the UK Clinical Ethics Network and Co-Chairs the UK Children’s Ethics and Law Special Interest Group.
    The views expressed in this piece are entirely their own

  • Daniel Sokol says:

    I agree with Dr Larcher and Dr Brierley that ‘Ethics support should be readily and rapidly available for those who need it, whether professionals or patients and their families’. The staff, patients and relatives at GOSH are fortunate to have such eminent clinicians and ethicists assist them. If only such support were available in all other Trusts!

    In relation to my recent Opinion piece in the BMJ, I did not have each and every detail of the case presented to the CEC and the circumstances surrounding the referral and discussion. In such a situation, a commentator should exercise caution before passing judgement. However, the High Court – who had the benefit of submissions from leading counsel for the Trust – identified what it considered a major procedural failing that, regrettably, caused considerable distress to the parents of the child.

    This deficiency appears to be unchallenged by the Trust. According to a Daily Mail piece of 24th July 2020, a Trust spokesman said: “We are sorry they [the parents] were not invited, they should have been.“ (https://www.dailymail.co.uk/news/article-8557787/amp/Great-Ormond-St-Hospital-blasted-girls-treatment.html)

    I accept, of course, that the CEC may disagree with Trust’s formal position on the issue and that they may feel that they have acted appropriately at all times.

    I would also like to comment briefly on this assertion, made by Drs Larcher and Brierley: ‘Offering an ethical opinion to a clinician-or indeed a parent- who requests it is not the same as acting as an expert witness to a court.’

    There are indeed differences but the point I was making (no doubt badly) was this:

    When, as a barrister, I am asked to give advice on whether a doctor acted negligently in the course of his or her treament of a patient, I am meticulous and thorough. I can easily spend 10-20 hours reading the medical records, the reports of the experts, talking to the client and relatives, and holding discussion with the medical experts. Why? Because the case is complex and I need to be as sure as I can be that my opinion is informed and correct. The consequences of giving wrong advice, leading to either the abandonment or pursuit of the claim, are potentially serious as most of the time the client will follow my advice.

    In my own experience, CECs do not display anywhere near the same degree of thoroughness and attention to detail when assessing a case. At times, this is not necessary (because of the nature of the case or the type of advice or guidance sought). Other times, the referral does call for more careful, time-consuming analysis. This can take many hours and it is unfair, in my view, to expect members to do this for free. I am glad – and impressed – that the GOSH CEC does devote the required attention to their referrals.

    It would be a mistake, I feel, to dismiss the negative judicial comments on the procedural fairness of the CEC as misguided. It is an opportunity for all CECs to introspect and to make improvements. If the highly respected GOSH CEC has room for improvement, then so does every CEC.

  • Joe Brierley & Vic Larcher says:

    We thank Daniel Sokol (DS) for his response to our contribution and for his kind remarks. We in turn acknowledge his excellent contributions as an ethics and legal commentator over the years, and his meticulous thoroughness in the preparation of legal cases.

    We understand that he did not have every detail of the case presented to the CEC and the circumstances surrounding the discussion, and well recognise the difficulties that such a lack of detail imposes on the provision of informed comment. However, In common with other CECs, we cannot comment on details that are not in the public domain, and in particular why parents might not be actively involved in specific cases. This is particularly problematic in the kind of high-profile, complex cases that we and others have outlined. Although rare- indeed most cases that come to CECs do not require legal intervention for their resolution- such cases attract considerable social media attention and publicity, often adverse. As anyone unfortunate enough to have been targeted with this kind of attention will attest its unfairness is compounded by the lack of opportunity to respond or debate in a reasonable fashion.

    When legal intervention is necessary in these cases, it will be the Trust Executive acting on the advice of its Legal Department and learned counsel that determine the nature and content of the submission to Court. Just as clinicians are ultimately responsible for decisions as to what course of action they will follow, so it will be for Trust executives to determine the course of action that the Trust will follow. Clinical Ethics Committees will usually have little part in this, though of course minutes of meetings and emails etc. can be disclosed as part of the process, and will be generally available to all parties.

    Thus it is rare for CEC members to be called to give evidence in disputed cases. Likewise, it is rare for CECs to be asked to comment on submissions to Court. It should also be remembered that minutes and summaries of case discussions do not always reveal the richness of the ethical debate or adequately reflect the arguments used.

    We did not seek to underestimate or disparage the amount of meticulous preparation that goes into the preparation of opinions for use in Court. When we have acted as expert witnesses, we have had nothing but respect for the work our legal colleagues do in understanding complex medical facts. As a counterpoint, there is often considerable and comparable behind the scenes work in understanding complex medical and psychosocial facts in ethics reviews.
    We cannot, of course, speak for other CECs but we have been willing to share our accumulated experience and expertise with those who request it and to liaise with other CECs. We have undertaken regular educational activities, consistent with UKCEN objectives. We are disappointed if DS does not feel this is representative of the situation with other CECs

    We agree that the whole question of how the views, beliefs, wishes, and values of patients or in the case of incompetent children those with legal responsibility for decision-making should be appropriately represented. We accept that this is a problematic area as other contributors to this blog have recognised and that the area of procedural fairness is one that needs revisiting if only to correct misconceptions that might apply in the current climate.

    Finally, we believe that we can all agree on the need for high-quality ethics services as an essential component of the complex jigsaw that is modern medicine. We echo DS and others’ call for broader professionalisation, consistency, and improved governance of what we all agree is a vital support mechanism for clinical teams, patients and their families.

    We welcome the opportunity to work constructively with colleagues from a variety of disciplines to achieve this, and certainly agree we all need to seek to improve.

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