Great Ormond Street Hospital for Children NHS Foundation Trust v MX & Ors

In Great Ormond Street Hospital for Children NHS Foundation Trust v MX & Ors  [2020] EWHC 1958 (Fam), [1] a medical treatment case concerning a 9 year old child, Roberts J had some important observations to make about clinical ethics committees.  The case concerned treatment escalation in relation to a 9 year old child, who was at that point on the Paediatric Intensive Care Unit at Great Ormond Street Hospital.   The observations – which are of wider relevance – are contained in two helpfully self-contained paragraphs:

21. Referral to Ethics Committee. During her latest admission to PICU X's case was referred to and discussed by the Applicant Trust Ethics Committee on 15^th May 2020, where the consensus reached was that further invasive treatments, including renal replacement therapy, were not in X's best interests and that the focus should be on palliative care to maximise her comfort and quality of life prior to death. Although no external second opinions were sought this process, regrettably it did not involve the 1^st and 2^nd Respondents. I was told that there is no protocol or definitive guidance for the constitution and conduct of Ethics Committees, particularly as to the involvement of patients or their families in the meetings and decisions. Counsel for the child (through her guardian) drew my attention to the UK Clinical Ethics Network which on its website notes that "Current practice of most UK CECs does not usually involve patients or their families and carers in the committee's discussion but some committees have considered cases at the request of a patient's family or carer."^[1] In addition I was referred to an article, Newson, Ainsley J. "The role of patients in clinical ethics support: a snapshot of practices and attitudes in the United Kingdom." Clinical Ethics 4.3 (2009): 139-145, which I have read.
22. 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. While it is a matter of common sense and good practice for medical professionals and members of a multidisciplinary treating team to have discussions sans the patient or their relatives to enable an uninhibited and frank exchange of professional views and information without the need for the empathic, sensitive and supportive language used when speaking to patients and/or their families, 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.

These comments have provoked different reactions amongst ethicists: for contrasting views, see the blog posts by Daniel Sokol and Dominic Wilkinson/Michael Dunn.   At a minimum, though, the observations by Roberts J are important in focusing attention on the question of what, precisely, the role of clinical ethics committees (or, as many are known, Clinical Ethics Advisory Groups) is in the type of complex decision-making that is ever-prevalent in the clinical setting in relation both to children and adults with impaired decision-making capacity.

[1] Note, Tor has not contributed to this, having been involved in the case.