Ethics Committees questioned. “A more thorough and professional approach” needed.

We have reported many cases of Great Ormond Street Hospital and NHS Clinical Ethics Committees failing to involve patients in their decision making. This is without a doubt a serious bioethical issue, especially when children are at the end of life. Some of these cases have gone to Court and had international repercussions. In most of them, our Observatory did not support the Courts’ decisions, because they were based only on the NHS’s medical report, dismissing the opinion of parents and renowned international specialists, and refusing to consider a second opinion. From our bioethical point of view, this is a clear violation of the rights of children and their parents (read HERE and HERE).

The British Medical Journal published an article entitled A wake-up call for clinical ethics committees (July 27, 2020) wrote by Daniel Sokol, a barrister and medical ethics in London UK. who has sat on several clinical ethics and research ethics committees and legally represented patients, relatives and NHS Trusts. We have the pleasure to excerpt what, in our opinion, is more interesting for our readers.

Ethics Committees questioned

sperm donor crisisA High Court judge has criticized 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 author continues explaining that, “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.”

What role did the hospital’s clinical ethics committee play?

“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 dealing with the case said that, “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 no guidance in place to ensure their involvement and/or participation” [emphasis added]. The Court continued, calling attention to CECs: “the absence of any prior consultation or participation [our emphasis], 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 [our emphasis]. There should be guidance on patient/family participation and a clear protocol [our emphasis] 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.”

Ethics Committees questioned on their procedural fairness and rigor

The author, with extensive experience in the field, also voiced his concerns about “the procedural fairness and rigor of clinical ethics committees”, noting that “[m]ost clinical ethics committees are composed of people employed by the NHS Trust [our emphasis], although some contain a few non-clinical members from outside the Trust [our emphasis]. 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 [our emphasis]. This is hardly conducive to a balanced presentation of the case.”

He continues, giving his opinion of what should be a rigorous and trustworthy procedure for improving current CEC practice. “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 [our emphasis]. 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.”

Description of the current insufficiently robust CEC process

“In contrast, this same doctor may adopt a far more relaxed approach [our emphasis] 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 [our emphasis]. 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 voice of patients and relatives should be heard”

The author highlights the importance of the Court’s call to review current unprofessional and unethical CDC procedures. “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 [our emphasis] 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.”

Open debate in the UK. Bioethicists and parents argue for a change in childcare law in the UK

Our Observatory’s concerns about the violation of patient rights have been the subject of many articles, but we hope that this strong statement will lead to a radical change in the legal procedures and NHS policies in these cases, thereby avoiding the unnecessary suffering of patients or their legal representatives and the national and international discrediting of two great and valuable British institutions, namely the Court and the NHS.

Some of the special reports we have published about the victims of the current system (Read the last controversial case of Ashya King case and more articles):