By Jennifer O’Neill, 18th November 2021
On 1st November 2021, I received notification from Professor Celia Kitzinger that a case I had blogged about back in July 2021 was to be before the Court of Appeal the following day.
It was a case concerning the withdrawal of life-sustaining treatment from AH, a woman in her 50s, that had remained at the forefront of my mind since attending the hearing back in July.
Indeed, in the days before Professor Kitzinger had contacted me, I had been thinking of the family, aware that at the conclusion of the three-day hearing in August, Mr Justice Hayden had all but determined that the protected party, AH, should have life-sustaining treatment withdrawn by the end of October 2021, although the judgment to that effect was not handed down until 3rd September 2021 (Cambridge University Hospitals NHS Foundation Trust v AH & Ors (Serious Medical Treatment)  EWCOP 51).
Having witnessed a loving and dedicated family rally to their mother/sister’s cause at the previous hearings, I was not surprised to learn that they had brought an appeal against Hayden J’s order that it will not be in AH’s best interests, and not lawful, for ventilatory treatment to continue after 31st October 2021.
I was able to attend part of the hearing the following day, having requested and been granted access, by the Civil Appeals Office. (This was not one of the hearings selected for live-streaming). It was the first time I had attended a Court of Appeal hearing, and whilst the earlier Court of Protection hearings I had attended used the Microsoft Teams application, a different video conferencing platform was used by the CoA that I was not familiar with (Cloud Video Platform). My initial concern, therefore, was in ensuring my video and microphone were off so as not to interrupt proceedings. Once I was satisfied that I was ‘on mute’, I was able to focus on following the proceedings. Although I was unable to observe proceedings in their entirety (I had to leave and return in the afternoon), my familiarity with the case meant that I was able to follow what was going on.
AH – a lady in her mid-50s has been described as “…the most complex COVID patient in the world…”.
She is the mother of four adult children and is a central figure in the lives of her extended family.
In December 2020, AH was living at home with immediate family when she contracted COVID-19. She was admitted to hospital but later self-discharged. However, her condition deteriorated, and she was subsequently readmitted to hospital. It was at this point that AH expressed her wishes for ‘full escalation of treatment’, as is recorded on the hospital’s electronic ReSPECT form (Recommended Summary Plan for Emergency Care and Treatment). As one of AH’s last capacitous expressions of her wishes, the ReSPECT form would become a crucial consideration when seeking to determine AH’s best interests in relation to continuation of life-sustaining treatment.
At some point after the form was completed in January 2021, AH was intubated and ventilated in a neurological ICU unit. While in ICU, AH sustained a an extreme inflammatory reaction in response to COVID-19 – a highly dangerous phenomenon known as a ‘cytokine storm’ – and as a result she developed four separate, complexconditions:
- Cerebral encephalopathy (damage to the cognitive area of the brain)
- Brainstem encephalopathy (damage to the regulatory area of the brain)
- Motor neuropathy [damage to the nerves that innervate muscle]
- Necrotising myopathy [subsequent death of muscle tissue
Doctors believe that at least 90% of AH’s motor neurones may have been affected causing a loss of muscle function below the neck and limited movement of the diaphragm that necessitated ongoing ventilatory assistance.
Her clinical condition had been reviewed by leading experts at both home and abroad and there was broad professional consensus that there is a very limited prospect of meaningful recovery from what was described as a Minimally Conscious State plus (MCS+). This means that AH will likely remain fully dependent upon a ventilator to breathe, but can move her face, neck, and eyes to respond to ‘yes or no’ questions and can communicate through eye movements. Ambiguity surrounds the question of any further improvement.
At the previous hearing, Hayden J explored whether AH’s capacity may be impeded by fatigue associated with her ongoing ICU care and whether a period of ‘rest’ from the ventilator would enable her to gather the strength to communicate more meaningfully. It was, however, concluded that it was too dangerous to remove AH from the ventilator for these purposes.
Disagreement between Family and Medics at the hearing before Hayden J
The hearing centred upon the disagreement between the family and medics as to whether ventilation remained in AH’s best interests. The question of best interests came down to a “delicate balance” between the small pleasures AH can still enjoy versus the unimaginable burden of a living for months subject to the rigours of ICU care. Death was considered by medics to be inevitable within six to nine months and, from their perspective, the issue was whether AH would have a planned and dignified death following removal of ventilation surrounded by family, or risk succumbing to overwhelming infection unexpectedly, and without family present and die a painful death if she were to continue on the current care pathway. I have set out a summary of their respective positions below:
The Family. The family argue that AH contracted a novel virus, SARS-CoV-2 which is not fully understood by medical science and so medics cannot say, with absolute certainty, that there is no possibility of further improvement in AH’s condition.
They argue that AH has already made improvements not foreseen by the medical profession. Furthermore, the family argue that AH continues to experience enjoyment in life: she smiles at family, laughs when tickled and watches and responds to her favourite TV shows, Eastenders and Mr Bean. They argue that doctors should “exhaust all avenues” rather than “rushing to put her on end-of-life” (AH’s sister, Day 2 of Hearing).
They also argued that these factors may be indicative of a higher level of consciousness than previously recognised by medics. Furthermore, they assert suicide would be contrary to AH’s deep Muslim faith. Justice Hayden, however, explained that this too was reflected in English law and that the “compelling evidence” was that AH was now dying and the question before the court was not if but when she died; namely by withdrawal of ventilation or by inevitable overwhelming infection.
The Healthcare Professionals. Treating clinicians, and the medical experts, opposed the family’s view that there was limited knowledge of AH’s condition. They viewed the initial COVID-19 infection and its treatment as distinct from the resultant complications, including severe brain injury, in relation to which there is a widely-accepted prognosis.
They therefore consider AH to be palliative (as there was general consensus that AH would not live beyond 12 months) and see life-sustaining treatment as burdensome, invasive and as a source of distress to AH.
After the conclusion of the three-day hearing, Hayden J visited AH. He subsequently handed down a judgment that life-sustaining treatment was no longer in AH’s best interests and that it should be withdrawn by the 31st October 2021.
THE COURT OF APPEAL
The case was brought before the Court of Appeal by AH’s family, who were represented (pro bono) by Edward Devereux QC. As in the Court of Protection, Nageena Khalique QC continued to act for AH, and Katie Gollop QCcontinued to represent Cambridge University Hospitals NHS Foundation Trust. The hearing was before Sir Andrew McFarlane, Lord Justice Moylan and Sir Nicholas Patten.
I noted that at the start of proceedings, the Justices explained that they did not know AH’s family, however, they had a sense of their perspective and involvement from Justice Hayden’s prior comments on the case and the assured the parties that they came to the case afresh.
The Court of Appeal Justices noted that Mr Devereux’s, whose expertise lie in Family Law, brought a fresh approach to this case.
Mr Devereux explained that AH had improved and that some of the previously heard evidence suggests that AH could become fully conscious and emerge from the current ‘minimally conscious state (MCS) plus’. AH’s level of engagement and communication was described by him as being “striking” and he noted that it “brings home the level of communication of this formidable woman”. Mr Devereux acknowledged that Hayden J had presided over the case with compassion and empathy, yet he respectfully challenged the ruling on five points:
- That Hayden J gave insufficient consideration to AH’s earlier capacitous written statement that stated she wanted a full escalation of treatment (relating to the ReSPECT form she had ‘signed’ before ICU treatment commenced back in January).
- That Hayden J failed to give sufficient weight to AH’s religious and cultural values with regards to life-sustaining treatment
- That Hayden J failed to weigh and balance the past and present wishes of AH in relation to the withdrawal of life sustaining treatment
- That Hayden J failed to properly balance the respective and relevant rights under European Convention of Human Rights – particularly with relation to the requirement to conduct proceedings fairly.
- That the visit Hayden J made to AH after the conclusion of the hearing, and before handing down his judgment, was procedurally inappropriate, and an inappropriate evidence-gathering activity.
The first four of these points are based on the claim that in declaring AH’s best interests as he did, the Judge erred in the exercise of his discretion. The fifth point is a claim that the judge’s visit to AH was procedurally unsound (Civil Procedure Rules Part 52 rule 21(3) (b)).
The evidence and the appeal
At the earlier 3 day hearing, there was agreement between the parties that, since AH is unable to make a decision about ventilation for herself (s. 3, Mental Capacity Act (MCA) 2005), the decision must be made for her, considering all the relevant circumstances in accordance with section 4 (MCA) 2005, i.e. taking into account her past and present wishes and feelings, the beliefs and values likely to influence her decision if she had capacity, and the other factors she’d be likely to consider if she were able to do so. Hayden J described the case as one of the most difficult of his 35-year career. It has been clear throughout these proceedings that AH’s family is central to her world, the source of ongoing comfort and pleasure in her life. Never before, he said, had he been asked to make a best interests decision about withdrawal of life-sustaining treatment for a patient who could still communicate and enjoy a degree of pleasure in life. Therefore in approaching this most difficult of dilemmas, Hayden J sought to identify the “code by which [AH] lived her life” so as to understand what decision AH would make for herself in this situation if she were able to do so. AH is described as a fiercely independent woman who is now fully dependent upon others; an extremely private woman whose privacy is now invaded on a daily basis; and a woman who has fought throughout her life, always retaining hope despite her struggles.
I noted that the Court of Appeal Justices acknowledged that Hayden had found this case to be “challenging” on account of AH’s awareness, recalling that he had described AH’s moments of enjoyment as “pockets of joy on a scorched landscape” of pain and suffering. Whilst they assured the court that they “come to this case fresh”, they made it clear from the outset that they agreed with medical evidence that AH’s current neurological condition was a consequence of COVID-19 infection and not an ongoing symptom of it. In this way, they sought to explain that AH’s neurological injury was not novel in the field of medical science, but that it could be compared to other patients who are in minimally conscious states (MCS) as the result of a traumatic car accident for example. Mr Devereux contested this view, arguing that there was a “tangible difference” between the evidence of Dr D (Expert witness) and that of Dr B (a consultant neurologist and treating physician) and Dr A (Consultant in Neuroscience and Trauma Intensive Care Medicine) at the earlier three-day hearing.
Dr D felt there may be some prospect of improvement in AH’s cortical function but not enough to return to normal and that there was a risk that improvement could coincide with the onset of the painful nerve condition ‘trigeminal neuralgia’. Dr B foresaw that if AH were to survive for several years, “one might see some movement in fingers, toes …[but] I do not believe there is any prospect of meaningful power…based on the neurophysiology…the pathology of the nerve or the muscle…she is not going to be able to”. Dr B also admitted that there are ways in which people can control their environment with a single muscle, but this was not something he would want, adding “but that [his perspective] doesn’t matter”. Whilst Dr A also said it was unlikely AH would come off the ventilator. He explained that the phrenic nerve that supplies the diaphragm which has a major role in the mechanics of respiration) was unlikely to regain “significant function”. Overall, there was, despite Dr B’s evidence, broad consensus that continued ventilation was not in AH’s best interests as an exhausting and relentless process in a noisy ICU ward that was not conducive to rest and recuperation.
Mr Devereux then turned to address the grounds for appeal. In relation to each of these grounds, the Trust considered the application to be “unmeritorious… with no real prospect of success”, saying that Hayden J’s judgment is “thoughtful, detailed [and] nuanced” and that “no relevant factor was left out of account or given insufficient consideration or weight”. Although the family members had been unrepresented at the hearing before Hayden J:
“…. the points that they seek to raise in this appeal were amply and ably made by leading counsel instructed by the Official Solicitor. At the conclusion of the evidence, the Official Solicitor opposed the application. As a result, when exercising his discretion, the Judge had the benefit of full written and oral argument as to the factors that it is now said were not properly taken into account…” (Katie Gollop QC)
It is well established that the Court of Appeal is slow to interfere with the exercise of a judges’ discretion and will not “disturb such an order unless the court making it had erred in principle or reached a conclusion that was plainly wrong”. (Re: AB (Termination of Pregnancy)  EWCA Civ 1215,  I WLR 5597 King LJ).
1. Failure to give sufficient consideration to the ReSPECT form
He argued that insufficient weight had been given to the ReSPECT form which was an indication of AH’s wishes for “full escalation” of treatment. This was a capacitous decision, made by AH at a time when she knew she was infected with Covid-19. Her decision then was that she wanted all steps to be taken to preserve her life.
In his judgment, Mr Justice Hayden concludes that he is “unable to extrapolate” from the ReSPECT form that AH “would have wished to remain connected to a ventilator”. The form was completed when AH was ‘in extremis” and it “reflects an emergency response to crisis situation” (para. 14 of the judgment). (ReSPECT stands for “Recommended Summary Plan for Emergency Care and Treatment”).
The Trust’s position, represented by Katie Gollop QC, was that the form applied only to an emergency situation and so was no longer relevant. Indeed, Ms Gollop asserted that the trust, in considering that what a patient might want in an emergency would not necessarily apply in non-emergency circumstances – and to presume otherwise could, in itself, be a violation of human rights.
In the Trust’s view, the judge did give the ReSPECT form sufficient consideration and this ground of appeal has “no reasonable prospect of success”.
In my view, this issue of the ReSPECT form raises some important issues. It highlights why there must be greater emphasis on having open discussions with patients so that they can make informed decisions in advance of situations arising in which they might lack the capacity to do so. These are often uncomfortable considerations, however, in the daunting setting of the ICU, with fear and uncertainty, it is also a difficult time to discuss the possibility of ongoing care and the risk that they may not be able to come off the ventilator at a later stage. Nonetheless, if patients’ wishes are to be facilitated at a later stage, it is important that in some way, their longer-term wishes about ongoing support are gauged so as to help the families and courts should such dilemmas occur.
2. Failure to give weight AH’s religious and cultural beliefs
Mr Devereux second ground of appeal was that Hayden had failed to take into account the information provided by the family with regards to AH’s religious and cultural beliefs and that Hayden’s judgement was not reflective of the “cumulative” and “compelling” evidence provided by the family outlining what AH would want to happen in these circumstances.
During the earlier hearings, we heard how AH enjoyed family holidays and liked to listen to relaxing jazz music which brought her a sense of ‘peace’ and calm. As a practicing Muslim, AH also gained spiritual comfort from listening to recordings of prayers. The family also explained that, on account of her strong faith and beliefs, she would be against any form of suicide: only Allah can take life away and the taking of one’s own life is wrong.
There is evidence from the judgment that Hayden J full considered AH’s religious views (as presented to him by her family) but that these views did not lead him to the view that AH would have considered withdrawal of ventilation under her current circumstances (where the alternative is continued indefinite ventilation in ICU) as opposed to her values”.
As he said in the judgment:
“Whilst I have identified AH’s religious and cultural views as integral to her character and personality, I am not prepared to infer that it would follow that those views would cause her to oppose withdrawal of ventilation in these circumstances. On these difficult end of life issues there are differing views within each of the major faiths, including within Islam. […] The assumption that AH would have taken a particular theological position on her treatment plan solely because she is a Muslim, even an observant one, is not an assumption I am prepared to make. To do so risks subverting rather than protecting AH’s autonomy. I also note that there is a range of opinion, within this Muslim family, as to what is the right course to take”( para 93 judgment).
In the Trust’s view, there is clear evidence that the judge appreciated AH’s life as a practicing and observant Muslim and that he weighed this up in exercising his discretion. Likewise, in the Trust’s view, this grounds of appeal has no reasonable prospect of success.
3. Failure to Give Weight to AH’s Past and Present Wishes
The family argued at appeal that Hayden had failed to adequately weigh their evidence regarding AH’s past and present wishes against the medical evidence.
The judge received and considered a great deal of evidence from AH’s family on day 2 of the final hearing before Hayden J.
In my view, it was the evidence from youngest daughter M that was most striking. M fiercely advocated for the mother, a moving testimony that was, at times, very difficult to listen to as it felt intrusive upon a family’s pain. M provided daily, intimate care for her mother. M felt that some nurses were doing “the bare minimal” for her mum and were more focused upon machines than her mother – perhaps explaining AH’s distress when family were not there. M explained that she did not see someone who was dying, rather she saw someone “nodding back [to her] … watching tv on the iPad… [someone who was] breathing” and that doctors are “taking her away from us”. She argued that doctors had told them she wouldn’t ever be able to do some of the things she was now able to now do – an argument reaffirmed by her siblings – and pleaded with Hayden J to let her have “whatever life she has [left]”. Hayden J had vehemently denied any such criticism of the Trust, reminding the family that AH had not yet sustained a pressure sore or infection and that this was a testament to the standard of care she had received.
The family has also described how AH would not have wanted to be in institutional care and this was something that Hayden J clearly gave deep consideration to. Doctors described the mechanical ventilation that AH was subject to as being akin forcibly running marathon each day, without rest. AH, a lady who would never have wanted to be in residential care, was now in a form of institutional care in ICU, with little chance for rest, privacy and indeed dignity. Medics explained that ICU treatment was so traumatic it often leaves survivors with ICU-related post-traumatic stress disorder (PTSD). He also considered medical evidence that AH was distressed when her family were not there, perhaps implying this was because it was all too much. He also noted that clinicians believed that as AH continues to ‘emerge’, her suffering will increase. It was on this evidence, that the family say Hayden J focused in the hearing, rather than on their testimony that their mother would want to continue on for as long as she had left. AH’s eldest daughter felt that her mother would “want us to do everything possible…to exhaust every possible avenue to get better”, however she later accepted that her mother was suffering. AH’s sons and sister had also given powerful testimony. One son explained that doctors had said his mother would not make new memories, yet she recognised staff and even had a favourite nurse. The collective family evidence portrayed AH as a fighter, a strong woman who had always faced adversity head-on in her life and who would equally fight this current form of adversity. AH’s son said he’d asked his mum if she wanted to continue to which she responded she did. Hayden J, however, said that the son was likely to be “last person in the world she’d tell” if she didn’t want to continue. He appeared to me to indicate that as an impartial party, he would be better placed to ask AH such a question at his visit.
In the Court of Appeal hearing, Mr Devereux pointed to a “disconnect” between Hayden J’s conclusions as to what AH would want for herself and the evidence he presents (in the judgment) for these conclusions. He said that Hayden J “ignored almost in its entirely the written evidence of the children and oral evidence as to what their mother would like”. He ran through the evidence in the witness statements and said, “when the judge comes to the conclusion as to what her wishes are there’s a disconnect from the evidential foundation and what he concludes and it’s very difficult I think – if not impossible – to see where he locates that fundamental conclusion”.
4. Failure to properly balance the interference with AH’s ECHR rights
This ground of appeal was not much further developed in the hearing, but the key ECHR rights to which (the appellant argued) insufficient consideration has been given are AH’s Article 2 right to life, and her Article 8 right to respect for private life (which encompasses personal autonomy).
5. Failure to conduct proceedings fairly and procedural errors in visiting AH
After the conclusion of the formal hearing and before publishing his judgment, Hayden J visited AH in hospital. It was submitted by Counsel for the family that this meeting was an “evidence-gathering exercise” to establish what AH’s views were, and that the visit likely influenced his overall conclusions. He further argued that it was wrong of Hayden J to privately seek to elicit the wishes of someone in AH’s position, where the ultimate question is one relating to continuation of life sustaining treatment. The judge, said Mr Devereux, asked a leading question (“I think it may be that you want some peace”) and treated some (unexplicated) sign from AH as evidence that she wished her life to end: “The time has come to give AH the peace that I consider she both wants and is entitled to”, para. 107 of Hayden J’s judgment). Counsel for the family invited the court to conclude that it was procedurally unsound, unfair and inappropriate for the Judge to meet with AH and ask her what he did.
Further considerationwas given to Hayden J’s words that suggested that AH had indicated “she wanted peace”. Peace, we heard, could be interpreted in various ways and so this statement lacked clarity. Examples were given, such as that one might say “I will give you peace” as an indication that one is leaving a room, peace may be considered in its spiritual sense or it could be considered in the ultimate sense, as in death. In the judgment, Hayden J says that “AH has also been able to derive peace from prayers from the Koran” (para. 72 of Hayden J’s judgment)
I had noted that at both the directions hearing and the conclusion of the three-day hearing that Hayden J had expressed his wishes to visit AH. He explained that he often did this, and it allowed the protected person (P) to have an opportunity to have their voice heard. AH’s family were equally anxious to ask that they be present at any such visit as they could communicate best with her and they wanted to ensure that Hayden J got the most out of the visit. Upon the conclusion of evidence at the hearing, Hayden J had explained he would visit AH before giving his judgment. At that time, he also indicated to the eldest daughter – who was abroad – that she should return, perhaps indicating that in his mind a decision was already made.
It is difficult to know how the Court of Appeal will view this stance. In explaining the manner in which the family’s legal team considered Hayden J to have erred in law, Mr Devereux cited the 1998 family law case of Re KP (A Child)  EWCA 554. In Re KP, a 13-year-old girl had opposed a return to Malta under her father’s guardianship and the CAFCASS Officer had recommended that the judge meet with KP since the child was “feeling unheard”. The meeting lasted over an hour and during this time, the judge asked a series of 87 questions, ultimately concluding that the child was very confused and did not object to the return to Malta on rational grounds. The Court of Appeal firmly indicated that judges should passively receive information and that if information was provided by a child, then the judge was duty bound to report that information back to all parties so that they might determine how such evidence should be interpreted. In KP, the meeting had provided evidence which was pivotal in the judge’s evaluation of the case and was linked to causation. The family argue that had Hayden J visit to AH was, “on the wrong side of the line” and sought to gather evidence which was not shared with all parties with adequate notice, rather than being a means of seeking to clarify her wishes. They explained that had it been aimed at ascertaining AH’s wishes, there would have been greater planning and her family, who communicate best with her, would have been present.
At the root of the problem it seems that there may be a lack of clarity as to why a judge would meet with P and how what P says is supposed to figure in the decision-making process. Guidance from Mr Justice Charles in 2016 specifies that “If P wishes to meet with the Judge, it must first be determined what the purpose of such a meeting would serve and the court and the parties must be clear about that in the particular case.” He also says that “Consideration should be given in advance to […] How should questions be drafted and posed to P to elicit P’s views, minimising leading questions?”
Awaiting the judgment
Proceedings were concluded as the Court of Appeal justices left to consider their ruling on the case.
From my perspective this has been a difficult case throughout the various hearings. It is challenging to know what the right outcome is. At the centre of proceedings is AH, and on all parties seek to act in her best interests.
The case raises the issues that may lead to improvements being made: such as through an enhanced ReSPECT form, heightened awareness of advance decisions to refuse treatment and improving guidelines for judicial visits to protected persons to ensure there are no procedural irregularities which may affect decision-making in these crucial cases.
Jennifer O’Neill is a Lecturer in Anatomy at the University of Glasgow and visiting collaborator at European University Cyprus.