A High Court judge has criticised Great Ormond Street Hospital’s Clinical Ethics Committee (“CEC”) for failing to involve the parents of a nine year-old child in their decision making process. 
The child had severe renal, lung, brain and intestinal problems. She was so unwell that in the previous seven years, she spent only 16 days at home.
As a result of a deterioration in her condition, the NHS Trust made an urgent application to the High Court for permission to withhold treatment and for declarations that it was lawful to set ceilings of treatment. The parents disagreed with the medical team.
Prior to the Trust’s application, the matter was referred to the hospital’s clinical ethics committee. The committee concluded that further invasive treatments were not in the child’s best interests. The committee did not seek the views of the parents. The judge was unimpressed by this omission:
“I consider that 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 Court then made recommendations on the way CECs should operate:
“the absence of any prior consultation or participation, cannot be good practice and should generally be unacceptable. Even at hastily assembled meetings there should be notice taken of the views of the patient and/or close relatives which could take the form of some written notes or letter submitted on their behalf. There should be guidance on patient/family participation and a clear protocol of how and when they are informed as to the arrangements being put in place for an Ethics Committee to meet along with being informed as to the outcome.”
The impact of the judge’s criticisms and guidance should not be underestimated. It is a wake-up call for clinical ethics committees and NHS Trusts to scrutinise the way clinical ethics committees function and their role within the institution.
According to the UK Clinical Ethics Network, there are 85 clinical ethics committees in the UK. The majority provide ethical support on individual cases. In years past, I sat on two clinical ethics committees and I am full of admiration for those who do. Members give up their time to assist others for no fee.
However, I have concerns about the procedural fairness and rigour of clinical ethics committees. Most clinical ethics committees are composed of people employed by the NHS Trust, although some contain a few non-clinical members from outside the Trust. Details of the case are usually provided by the clinician seeking advice, with no input from the patient or relatives. The clinical ethics committees hear only the perspective of the referring clinician. This is hardly conducive to a balanced presentation of the case.
In my legal work, we regularly ask medical experts to comment on a patient’s case. The expert will read the medical records, examine the patient, refer to articles and textbooks, and produce a detailed report with their conclusions and reasoning. This of course takes hours. The expert knows that the report will be subject to scrutiny by patients, lawyers, other experts, and potentially the court. He or she is also paid for the work.
In contrast, this same doctor may adopt a far more relaxed approach when asked to comment on a clinical ethics issue as part of a clinical ethics committee. Before the meeting, clinical ethics committee members may have access to a short summary of the facts, assembled by the referring clinician. The clinical ethics committee may have no experts in the medical specialty in question. The referring clinician may attend the meeting and deliver a short presentation about the case to the clinical ethics committee, who would then discuss it and after a few minutes make recommendations. It is not a sufficiently robust process.
The judge’s remarks call for a more thorough and professional approach to clinical ethics committees. If the voice of patients and relatives should be heard, then the current amateurism must end. Clinical ethics committees will require a full and fair presentation of the critical evidence and more time to prepare for meetings. The meetings may become more adversarial, especially if patients/relatives ask lawyers to articulate their views for them. This adds a layer of complexity to the proceedings. The rules of natural justice come to the fore.
To raise standards of decision making, members of clinical ethics committees should be trained and paid for their time preparing for and attending meetings.
Whether NHS Trusts will be willing to invest in clinical ethics committees 2.0, whether they will be worried about the medico-legal implications of this greater openness to patients, whether some existing committees will collapse under the weight of these new, higher expectations, and whether clinicians will be more or less inclined to refer cases to clinical ethics committees are open questions.
What is plain, however, is that clinical ethics committees must now review their methods of work and reflect on the quality and fairness of the service they provide.
Daniel Sokol is a barrister and medical ethicist in London, UK. He has sat on several clinical ethics and research ethics committees, and legally represented patients, relatives and NHS Trusts.
Competing interests: None declared.
1] Great Ormond Street Hospital for Children NHS Foundation Trust v MX, FX and X  EWHC 1958 (Fam)