Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.
In a recent case,1 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 their daughter. This begs the question of the extent to which parents should be involved in the CEC and what role it fulfils.
X was 9 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, dystonia and four-limb cerebral palsy. Concurrently, she suffered gut ischaemia, remaining entirely dependent on parental nutrition. This led to ‘extremely’ difficult vascular access and lymphoedema. X had spent only 16 days at home in the past 7 years, such was her dependence on medical and specialist care.
An application was made by the hospital to seek a declaration that both Optiflow non-invasive ventilation and readmission to an intensive care ward were contrary to X’s best interests. Supported by contrary 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. Six weeks prior to the hearing, X’s case had been discussed by the CEC.
The court noted that the clinical ethics process ‘did not involve’ the parents prior to the meeting of the committee. The judge found 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. The interests of the patient must be fully appreciated during the discussion related to the lawful and ethical options open to the clinicians. In X’s case, it is not clear to what extent her parents’ views or involvement were canvassed prior to the CEC meeting.
While the judge found there had been ‘no involvement’, the parents asserted that their views ‘…were dismissed out of hand’. This apparent contradiction perhaps reflects disconnect or disagreement between the clinical and parental positions rather than an absolute lack of involvement.
The judgement echoed the children’s guardian noting that ‘the involvement of the parents in clinical ethics committee process is essential’. This fell short of demanding parental attendance at CEC meetings.
The court conceded that multidisciplinary meetings in the absence of patients or relatives enabled ‘…an uninhibited and frank exchange of professional views and information’. The judge was right to couch resultant free-flowing discussion as potentially ‘dispensing with empathy’. For this reason, inviting parents to the main CEC meeting that considers the options for their child could unintentionally cause profound distress.
Any doctor or nurse who has attended ‘best interests’ meetings with relatives will be acutely aware of the detailed prior choreography that may be involved. Relatives’ distress, anxiety and fear are anticipated and steps to minimise this are taken in advance of the meeting. Disclosure of clearly expressed information and plans and prognosis with minimum ambiguity is rehearsed. Clinicians settle differences of nuance beforehand.
Few of these steps can practicably apply to a CEC meeting.
The multiprofessional CEC members will likely include philosophers, theologians, varying faith representatives, managers, lay people, clerical staff, students, academics, visitors and clinicians. This diversity is necessary, seeking scrutiny of the patient’s quandary from many independent perspectives. The polyglot composition is essential for the CEC. But the independence of each member makes choreography designed to assuage the distress of attendant parents impossible. More likely than not, the assembly will revolt at any form of rehearsal, seeing that as subversion of the rights of the (usually incapacitated) patient, encouraging conformity to the ‘medical’ preferred outcome.
The judge reflected on the sparse national standards for CECs, 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 ethical challenge has been issued before,2 but this may be a unique judicial excursion. An American judge called for a ‘tribunal’ other than a court of law to make complex medical and ethical decisions3 but no further judgements touch on CECs.
The judge in X described the CEC as reaching a consensus ‘…that the focus should be on palliative care to maximise comfort and quality of life prior to death’, indicating that the court considered the CEC to be acting as a decision maker.
The judge reviewed materials placed before the court by the opposing parties. It is surprising that this did not include the literature review4 commissioned by the Nuffield Council on Bioethics, since this would have placed her in a strong position to comment on the role of CECs. The review makes it clear that CECs make no decisions in the UK. Individual CEC members plainly have their own views, contributing to the collective body of lawful and ethical options, but no one option is put first. This must be right. CECs are not regulated nor is there any formal designated mechanism for scrutiny of their deliberations. Lacking conferred authority, the committees enjoy merely the credibility of their host organisation, in particular the trust (or otherwise) of the clinical staff. If the doctors, nurses and therapists view their CEC as unreliable, few referrals will be made and likely as no ethical problems will be taken directly to the trust solicitors. While an obvious straightforward route, it must be remembered that the trust solicitor represents the interests of the trust, not those of patients.
The commissioned review also noted that parental referrals to ethic committees might encourage clinicians to consider an ethical perspective, should this be necessary.
This judicial guidance should put on notice clinicians seeking CEC advice regarding their clinical options to ensure that there is a clear record of the parental views as to their child’s best interests . Further, to remind clinicians that the CEC will not be taking the decision on their behalf.
Perhaps, CECs in the UK might adopt an obligation emulating a recent judgement on confidentiality: a duty to consider how parents are involved5?
In this way, the early clinical discourse with a child’s parents might note the availability of a local CEC; the possibility of parental referral could be disclosed. Should a referral from any source be envisaged, the anticipated papers of submission can be shared with, appended by or even based on the parents’ knowledge of their child, together with their wishes and fears and beliefs. If it becomes clear that the CEC will never grasp the clinical situation without seeing the parents, this may be contemplated, although with inherent difficulties. Naturally, the CEC advice will become part of the child’s hospital record, freely and immediately available to the parents.
Taken together, this would fulfil a duty to consider how the parents are involved.
Patient consent for publication
Funding The author has not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests I am a chair of our hospital’s clinical ethics committee and am regularly and frequently approached by clinicians seeking to ‘bring’ cases to the CEC.
Provenance and peer review Commissioned; internally peer reviewed.