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Parents participating in clinical ethics committees

In a recent case, a High Court judge noted with ‘surprise and concern’ the lack of parental involvement in the deliberations of a hospital clinical ethics committee (CEC) regarding the options for the treatment of a young girl. This begs the question of the extent to which parents should be involved and what role the clinical ethics committee fulfils.

The little girl in question, X, is nine years old. A healthy twin, she suffered haemolytic uraemic syndrome (HUS) as an infant followed by end stage renal disease and subsequent transplantation. During her initial HUS she acquired a severe brain injury, leading to cortical blindness, severe developmental delay and dystonia, and four limb cerebral palsy. During the same illness she suffered gut ischaemia and remains entirely dependent on parenteral nutrition. This in turn has led to ‘extremely’ difficult vascular access and lymphoedema. X had spent only 16 days out of her past 7 years at home, such is her dependence on medical and specialist care.

An application was made by the hospital to seek a declaration that both (i) Optiflow non-invasive ventilation and (ii) re-admission to an intensive care ward were contrary to X’s best interests. Supported by expert evidence, the court found that X should be provided with Optiflow to alleviate symptoms of respiratory distress under certain circumstances; and that the fluctuations in and unpredictability of X’s condition made it impossible to provide the declaration sought by the hospital.

The judge described the CEC as reaching a consensus ‘...that the focus should be on palliative care to maximise (X’s) comfort and quality of life prior to death’. This would indicate that the court considered the CEC to be acting as a decision-maker. Whereas in reality, the conventional function of a clinical ethics committee is to set out clinical ethical options, from which the clinicians in charge of the case will draw their own conclusions. It must be thus. The CEC members cannot possibly ‘know’ the patient or their pathology or their relatives in sufficient detail to reach a final decision. But it is usual for there to be more than one subtle clinical option to be available in any given situation; the question for the CEC is whether each variation is ethical and lawful.

The court also noted that the clinical ethics process ‘did not involve’ the parents prior to the meeting of the committee. The judge made it clear that ‘...the absence of any prior consultation or participation (with/of the parents) cannot be good practice and should generally be unacceptable’. This is plainly true; any clinical team seeking an opinion from their CEC should consult with parents (or relatives) prior to a meeting so that the interests of the patient are fully appreciated during the discussion related to the lawful and ethical options open to the clinicians.

In X’s case, it is not entirely clear as to what extent her parents’ views or involvement were canvassed prior to the CEC meeting. Whilst the judge found there had been ‘no involvement’; the parents asserted that their views ‘...were dismissed out of hand’. This perhaps reflects disconnect or disagreement between the clinical and parental positions rather than an absolute lack of involvement.

The judge reflected on the sparse national standards for clinical ethics committees, noting no evidence for the existence of national protocols or definitive guidance as to the involvement of patients or their families in the meetings or decisions. This by itself she considered ‘…an issue of medical ethics’. The court conceded that meetings in the absence of patients or relatives enabled ‘ uninhibited and frank exchange of professional views and information’. Whilst reiterating the need for guidance on patient and family participation to ensure they can be informed in advance as to arrangements being put in place. This would include the necessity  for the CEC to meet and the proposed agenda, along with information about the outcome of the meeting.

This rare judicial advice is welcome. It should put on notice clinicians seeking CEC advice regarding their clinical options, to ensure that there is a clear view from parents or those befriending adult incapacitated patients as to where they believe their relative’s best interests lie. It seems as though clinicians should also be diligent in informing those supporting the patient through the CEC process before it begins, as well as the patient themselves, if they have the capacity or competence to be involved. In addition, to ensure that the options identified by the clinical ethics committee are disclosed to the patient, where possible, or to their family.

The full text of the judgement is available on the court reports page.


Robert Wheeler
Department of clinical law, August 2020