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The Court of Protection and “the most complex Covid patient in the world”

Alex Ruck Keene looks at the latest ruling by the Vice President of the Court of Protection on the withdrawal of treatment in a COVID context.

The Court of Protection braced itself when COVID-19 hit for decisions to be placed before it about the withdrawal of medical treatment, including potentially agonising decisions in the context of triage. Although an early decision (albeit not from the Court of Protection) looked as if it might herald a wave of situations being put before the courts to choose who could benefit from the last bed, this did not come to pass. There will, no doubt, continue to be examination as to why (one early stab relating to experiences at a large London hospital can be found here), but in the reported cases before the Court of Protection, the explicit focus has always been upon the individual in question.

Hayden J, who has decided the two previous reported cases relating to treatment withdrawal in the context of COVID-19 (Re TW and Re NZ, has now decided a third, Cambridge University Hospitals NHS Foundation Trust v AH & Ors (Serious Medical Treatment) [2021] EWCOP 51. The case is a stark reminder of the apparently random cruelty of COVID-19, as well as a further illustration of the extent to which judgments about best interests are just that – i.e. the exercise of evaluative judgment, as opposed to the identification of objective truths.

The case concerned a 56-year-old woman, AH, who had been an inpatient at Addenbrooke’s Hospital, Cambridge, since the end of December 2020, where she was admitted, on an emergency basis, suffering with severe symptoms of Covid-19, and where she remained at the time of the judgment, September 2021. AH was being cared for in a critical care unit and was dependent on mechanical ventilation, continuous nursing care, nutrition and hydration delivered via a nasogastric tube, and receiving various medications.

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Hayden J noted at the outset that he had been told that “in terms of the neurological impact and complications AH is ‘the most complex Covid patient in the world’.”   The medical evidence was detailed, complex and set out in very considerable detail in the judgment, but in headline terms, the COVID-19 virus, whilst no longer infecting AH, had caused substantial neurological damage. Whilst how the virus had come to cause the damage might not yet be understood, Hayden J was at pains to emphasise that the consequence of the damage and likely prognosis was. Her situation was described by the lead consultant, Dr A, as follows:

She has […] significantly diminished life expectancy, which is now certainly less than 12 months and, though it is difficult to be prescriptive, perhaps somewhere around six or possibly nine months. There is no guarantee that her death might not come unexpectedly, in consequence of untreatable infection (e.g. respiratory tract infection or infected pressure sore). AH is dying. The ventilatory support here is not keeping AH alive, in order to equip her to respond to an underlying illness (for which it is designed), it is simply keeping her breathing. In a very real sense, it is not prolonging her life, it is protracting her death. Moreover, it is extending her pain at a time when her ability to feel it has increased and, sadly, whilst her enjoyment of life has remained tightly circumscribed.

In the proceedings before him, Hayden J identified at paragraph 3, that:

The central issue is whether AH’s ventilatory support should continue. There is agreement between all the parties that AH lacks the capacity to give or withhold consent for medical treatment. AH’s family members have exhibited a wide spectrum of views whilst endeavouring to advance a collective and unified response. In truth, each family member has, both knowingly and otherwise, vacillated as to the best way forward. This, I consider, is because there is no solution which is in any way comforting. Equally, it is imperative that a decision be taken as to where AH’s best interests lie. The family recognise this.

Whilst Hayden J identified agreement about AH’s lack of capacity to decide in relation to treatment, and must be taken to have endorsed that agreement by his lack of detailed reasoning on this point, her cognitive impairments were rather more subtle than this might suggest.  As Hayden J noted:

72. To my mind, the identified ‘delicacy’ of the issues in this case arise from two important aspects of it. Both are facets of AH’s core humanity. AH is able to feel and show some degree of emotion. Predominately, she now reveals pain and real distress. However, she plainly sustains comfort from the presence of her children who have been the focus of her life. I have been told that AH has also been able to derive peace from prayers from the Koran and has demonstrated some enjoyment of films shown to her on her iPad. Both M and A [two of her adult children] consider that she has a level of awareness of and interest in her favourite soap opera which they regularly watch with her. This is doubted but not actively contested by the medical team. In many ways I do not consider that matters, what is more important is that she enjoys the comfort of her children being with her on these occasions.

73. [AH’s son, A] recently recorded a Koranic call to prayer, he did so in a large warehouse which enabled his strong and clear voice to resonate and echo. He asked me to listen to it and I did, once in the court room but also, on a number of occasions, privately, out of court. I found it powerful, beautiful and an extraordinary expression of filial love. A had plainly thought about this very carefully and planned it. His sincerity was evident both from his reaction when he listened to the recording in the court room, as well as in his voice as he sang the call. I was told, and entirely accept, that his mother manifestly enjoyed listening to it. Having heard all I have about AH I can think of nothing that was more likely to penetrate through her pain than this act of love.

74. All this signals to me that however depleted and compromised her life may have become, AH retains the capacity to feel and receive love. This is an important facet of human autonomy and dignity.

75. Secondly, whilst AH cannot communicate her own self-generated thoughts she can, with some level of consistency (though not completely), respond to short and focused questions. Of necessity many of these questions are what lawyers would call “leading”, in the sense that they permit only of a yes or no answer. I add that I have been repeatedly advised by the medical experts that such questions are frequently accompanied by body language and expression which communicates the desired response. Invariably, this is not deliberate, it is simply human instinct. A desperately wants his mother to live. Though he has the intelligence to absorb the impact of the medical evidence, his love for his mother causes him to retreat from the force of it. He devises questions to put to his mother in which he hopes to find evidence to support his own desire that she may continue to be ventilated.

Hayden J, however, was clear that on the basis of the medical evidence before him that

76. AH’s treatment is futile; she is dying slowly in both physical and emotional pain; her treatment is burdensome and exhausting; her rest is of necessity frequently interrupted and she is on a small noisy mixed-gender ward which affords her minimal privacy and fails satisfactorily to respect her cultural norms (this is unavoidable at present), her dignity is preserved by the tireless efforts of her doctors, the rigorously attentive care of the nurses, the sensitive and intimate care given by her daughter M, which is focused not only on her mother’s comfort but on her presentation to the world and more generally, the love of her children and family, which is fiercely strong and entirely unconditional. AH’s dignity, however, hangs by a thread. The challenge for all the professionals in this case, the family and the Court is as to how it can best be protected in these last months of her life.

Hayden J was equally clear that the option explored by the Official Solicitor of ventilation away from the ICU simply could not be regarded as medically safe, and hence that it would be a “misleading premise to identify it as an option which preserves life, even to a vestigial degree. The reality is that it runs the real risk of an avoidable, painful unexpected death, with no family in attendance” (paragraph 77). It was against this that Hayden J therefore sought to identify AH’s wishes and feelings, and conducted a detailed analysis of the evidence adduced in this regard by her adult children. Having done so, Hayden J set out his decision in simple terms, seeking in so doing to make sure that it was free from any ambiguity:

I do not consider that AH’s best interests are presently met by ventilatory treatment in the ICU; ventilation is now both burdensome and medically futile; it is protracting avoidable physical and emotional pain. It is not in AH’s best interests that ventilation be continued indefinitely. It is however in her interests that ventilation remains in place until such point as all her four children and family members can be with her. This, I am satisfied, is what she would want and be prepared to endure further pain to achieve. I am also clear that it is in her best interests to be moved to a place which protects her privacy and affords her greater rest. The details of these arrangements can be worked out between the family and the treating team. One of the children is presently outside the United Kingdom and will have to make arrangements to travel. I hope this is possible, but I make it clear that ventilation should be discontinued by the end of October 2021. Though there is an inevitable artificiality to this, it reflects the delicate balance that has been identified. It provides an important opportunity for this close and loving family to be together at the end. The treating clinicians feel able to work with and perfect this plan and recognise that it is consistent with their own professional conclusions and reflective of the central importance of family in AH’s hierarchy of values and beliefs.

It should be noted that Hayden J had been very alive to the fact that keeping AH ventilated to allow her daughter to travel would involve “some continuation of burdensome and futile” treatment, and to the risk that that this would be putting her family before her. However, at paragraph 106, he considered that:

[t]he preponderant evidence establishes that it is what AH would want. Dr A was inclined to agree. None of the options in this case is free from risk or without ethical challenge. Ultimately, they have to be confronted as best we can, it is impossible to avoid them.

Comment

Hayden J recorded that the Official Solicitor, Sarah Castle, identified this case as the most troubling and tragic of the cases of this kind with which she had been involved. She did not explain via her Counsel why this was so, although it might legitimately be speculated that this is because of the evidence relating to AH’s ability both to experience pleasure (going – it appears – beyond merely instinctual) and to express some level of consistent communication.

Further, and although against a very different factual matrix to that of the case of MSP or Mr Briggs, this case raises similarly stark questions about the construction of best interests decisions. In this context, it is perhaps particularly striking that despite the fact that Hayden J identified at paragraph 79 that “it is AH’s best interests and her wishes and feelings, in so far as they can be elicited, that are in unwavering focus here,” it does not appear that he was able to reach firm conclusions as to what her wishes and feelings would have been as to the maintenance of life-sustaining treatment per se, as opposed to the maintenance of life-sustaining treatment until such point as her family could be with her. The highest he could put it was to say that he was not prepared to infer from the fact that she was Muslim that it would follow that her religious and cultural views that they 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. There is recognition that intervention which may have a powerful effect on the body may be antagonistic to the integral well-being of the patient. Once treatment is identified as both burdensome and futile and where death becomes inevitable, the prolongation of death is recognised as disproportionate. Some faiths perceive man as having been created in ‘the image of God’, from which human dignity is perceived to be established. It is therefore reasoned that the protraction of death is inimical to respect for God and thus, inconsistent with belief. 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.

Although Hayden J reminded himself of the presumption in favour of life, it is perhaps of some interest (and consistent with his approach in other cases) that he is a judge who is willing to override that presumption on a best interests analysis even absent “sufficient[ly] certain” evidence as to what the person would have wished (the test applied by Charles J in Briggs at paragraph 62). An alternative way of putting this might, though, be that his approach in this case to the question of whether ventilation should be continued on a time-unlimited basis, was not, in fact, so much a best interests decision (centred around the person’s wishes and feelings) as opposed to an acceptance of the medical evidence that this was was clinically inappropriate (in respect of which wishes and feelings would be less relevant).

Turning to the question of whether ventilation should be continued on a short-term basis, from the evidence recorded in the judgment, Dr A appears clearly to have been of the view that continued ventilatory support was clinically inappropriate. It is equally clear that Hayden J was aware that he was asking doctors to continue to provide treatment which was clinically inappropriate (and which he could not, in consequence, demand on AH’s behalf, as Lady Hale made clear at paragraph 18 of Aintree). Hence why he was at such pains to say that his decision on AH’s behalf as to what should happen in the short-term was guided by his view about what she would have wanted, and his judgment framed as much as persuasion as explanation.

Three observations within the judgment are of note. The first is that Hayden J has now reached the clear conclusion that balance sheets do not assist in serious medical treatment case, noting at paragraph 66 that:

Though the attraction of such an exercise is beguiling, it is rarely, in my experience, productive. An assessment of ‘best interests’ must, ultimately, survey the whole landscape of a patient’s medical, welfare and emotional needs. The importance of ‘sanctity of life’ cannot be weighed effectively, for example, against the frustration of being unable to generate communication or the unrelenting distress of an infected bed sore. They are conceptually different and therefore, to my mind, logically resistant to a balance sheet exercise. 

For those who wish to read more about the extent to which balance sheets not be the answer (even if they may sometimes provide a useful checklist to ensure that important points have not been forgotten), this article may be of interest.

The second observation is that Hayden J was at pains to detail, and praise, the thoroughness of the decision-making by the clinicians involved. It is possible, in part, that this was because of observations which had been made to the contrary at some stages by AH’s family, but it also reflects the fact that he clearly took the view that this was a situation which – unlike many he has addressed – where the dilemmas were grappled with early, and the assistance of the Court of Protection sought in a timely fashion.

The third observation was in relation to the evidence of M’s daughter, S, who lived in Australia, Hayden J observing that “[p]aradoxically, I formed the impression that S’s geographical distance facilitated a more objective assessment of her mother’s best interests.”  This observation, deep in the heart of the judgment (at paragraph 83) is perhaps telling in terms of the exercise that is required by the MCA. When and how should evidence from those who are closest to the person be discounted because they are too close? It is a question of equal relevance to any CRPD informed approach of “best interpretation” of will and preferences – even if that is framed by reference to what, objectively, constitutes the best interpretation of the person’s will and preferences.

Alex Ruck Keene is a barrister at 39 Essex Chambers. This article first appeared on his Mental Capacity Law and Policy blog.

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