Removal of life support after brain stem death held lawful
14 February 2020
In two related judgments, Lieven J considered an application made by a Hospital Trust to withdraw treatment from a child receiving mechanical ventilation to keep him alive and an application for anonymity on behalf of his treating clinicians. The Trust succeeded in both. The decision has been upheld by the Court of Appeal.
The application to withdraw treatment was opposed by the parents. As always in such cases the circumstances were tragic and emotions ran high, which provides some context to the anonymity application.
In this case, as is usual, the child’s own interests were separately represented through his Guardian by the Children and Family Court Advisory and Support Service (CAFCASS). The parents, whilst listed as separate respondents, had joint representation and resisted the application on the same grounds, including their religious beliefs. That was an issue that also arose in the highly publicised case of Tafida Raqeeb v Barts NHS Foundation Trust  EWHC 2531, where a Muslim family succeeded in resisting an application by their 5-year old’s treating hospital to withdraw life sustaining treatment and were permitted to transfer her to an Italian hospital for palliative care, notwithstanding the fact that she was highly unlikely to recover and could live in a minimally conscious state for up to 20 years.
The Trust’s position was that the child, who had suffered oxygen deprivation since birth and had been on a ventilator ever since was now brain stem dead, as confirmed by three sets of tests since 1 October 2019. The Trust argued that this meant that it was not a ‘best interests’ case, as in Raqeeb where the patient was potentially minimally conscious. It was contended that the simple position was that if brain stem death had occurred then ventilation should cease. That position was supported by CAFCASS, albeit that the Guardian did in any event consider that it would be in the best interests of the child for ventilation to be withdrawn.
By contrast, the parents argued that best interests criteria still had relevance, even in cases of confirmed brain stem death and that ventilation should continue. Reliance was placed upon the fact that there was no statutory definition of death and that there had been no deterioration leading to cessation of the heartbeat, which was referred to in guidance concerning the diagnosis of death. It was argued that it would be inappropriate in medically complex cases for the court to approach matters without having reference to a best interests analysis and to fail to do so would not be compliant with Article 2 of the ECHR. In the alternative, the court should approach the question of whether death had occurred with ‘anxious scrutiny’ and it was argued that upon analysis the criteria for ‘death by neurological criteria’ had not been met.
The legal test – not a best interests case but anxious scrutiny required
The judge accepted the submissions of the Trust and CAFCASS on the legal test to be applied and reached the firm conclusion that
if a patient is brain stem dead then there are no best interests to consider .
The test for whether death had occurred was set out in the relevant guidance, in this case the 2008 “Code of Practice for the Diagnosis and Confirmation of Death” produced by the Academy of Medical Royal Colleges, supplemented by “The Diagnosis of death by neurological criteria in infants less than two months old” produced in 2015 by the Royal College of Paediatrics and Child Health. The earlier code confirmed that once the criteria are met other factors such as the heart continuing to beat had “no moral relevance”.
It was accepted that whilst a best interests analysis was not appropriate, anxious scrutiny was required, as in other areas of human rights law. The Trust did not resist the proposition that anxious scrutiny was the proper approach in such a case. Nonetheless, the judge held that article 2 ECHR added nothing given that if a patient is clinically dead there is no life to protect. The Codes of Practice had been drawn up by highly competent experts and was sufficient to meet the State’s duties to protect life under article 2. [33-4]
Having considered detailed medical evidence from treating clinicians and from a clinician from a separate Trust who had given an independent opinion, the judge was in no doubt that brain stem death had occurred. She rejected arguments that the tests were not carried out by suitably qualified clinicians or in the right circumstances or that requirements for parental consent had not been met.
She rejected the parents’ contention that brain stem death had not occurred. Reliance was placed upon observations of movements including the chest which they considered indicated attempts to breathe, as well as sweating and the continued functioning of the heart and organs. The Trust argued that these were essentially reflex responses from the peripheral nervous system, not emanations of brain activity, and that the heart will beat regardless of neurological activity. The judge accepted this, based as it was on the evidence of a large number of highly experienced clinicians. Accordingly the application to withdraw treatment succeeded.
Anonymity for the treating clinicians
It was noted in the main judgment that the father in this case, a biomedical scientist, had interpreted the material before the court in a way that suggested that he was clinging onto hope at times because his interpretation did not have evidential support. Moreover, damaging allegations had been made, eg that the clinicians had a conflict of interest due to their involvement in organ donation. The judge observed that whilst great sympathy must be extended to the parents, “that did not mean that they can have a free rein to make allegations against the doctors who are treating their child, where there is no basis for such allegations” 
The judge considered the matter of anonymity for the treating clinicians in a separate judgment. The application was opposed by the parents, and the Press Association, though not by the child’s legal Guardian.
Evidence was served about clinicians being psychologically affected by the case and being concerned about being at the centre of a media storm. Moreover, it was suggested that worry about these matters could dissuade experts from expressing honest and sincere views in such cases.
The parents’ position was that openness including naming of clinicians was important for public confidence and aids accountability. The Press Association argued that the matters relied upon by the clinicians did not override freedom of expression as protected by Article 10 of the ECHR. Many people might find it traumatic to be named in a press report, but that was not a good ground to grant anonymity.
The judge granted the clinicians anonymity, notwithstanding the fact that greater transparency in the family courts had been identified as important in recent Practice Guidance. She considered that the interest in open justice and naming the clinicians was outweighed by countervailing concerns, namely the clinicians’ private lives as protected by Article 8 of the ECHR and the strong public interest in professionals caring for critically ill children being able to do so without feeling that their privacy and ability to work was being jeopardised and potentially becoming the target of hostile comment. There was a well documented history in other similar cases of staff being targeted with distressing correspondence after press reporting. The father’s unevidenced allegations were also noted. In any event, the judge considered that the naming of the hospital and the child, which had not been opposed, meant that there was no question of ‘secret justice’ in this case. [12-3]
It is noted that allowing the clinicians to be anonymised here is a somewhat more benevolent approach than has been adopted recently for claimants in clinical negligence cases, where sensitive matters will be publicised that might be detrimental to their psychological state, eg in Zeromska-Smith v United Lincolnshire Hospitals NHS Trust  EWHC 552 (QB), covered on the Blog here.
Moreover, as the judge noted, the former President of the Family Division Munby J, in A v Ward  EWHC 16 (Fam) had adopted a rather different approach and suggested that exposure to media intrusion was something that treating clinicians in such cases would have to put up with as part of the job, as in the case of an expert witness. Lieven J disagreed, noting in particular that the clinicians were not experts and had no choice but to be questioned in the case. Further that Munby J’s comments came at a time
before the well publicised cases of Gard and Evans, and perhaps at a time where the risks from hostile media comment were somewhat less or at least perceived to be less.
Whilst not purporting to be setting down guidance, the decision here seems to be a direct reaction to the fact that news coverage has in similar matters been so extensive and highly charged, particularly in the Alfie Evans and Charlie Gard cases. Given the high level of public interest in the issues at the heart of these cases, the conclusion that the decision makers should be protected from identification as a matter of course could be questioned. In the instant case it was recognised that the family had maintained polite relations with staff and there had been no harassment to date or extensive press interest. However, the judge’s clear view was as follows:
I do not consider it appropriate to wait until such hostile comment, or worse, arises and then decide that an RRO should be granted. That is to shut the door after the horse has bolted.
Shaheen Rahman QC is a barrister at 1 Crown Office Row.