These are the words that Hayden J, Vice President of the Court of Protection, used to describe AH, the applicant in this case. The Official Solicitor identified it as “the most troubling and tragic of cases of this kind” with which she has been involved.
This case is the most recent and cogent in the consideration of best interests under the Mental Capacity Act in terms of continuing life-saving treatment. The “best interests” test is laid out in Aintree University Hospital NHS Trust v James  UKSC 67.
AH’s family was originally from Pakistan. She and her family moved to Uganda but they were expelled, as South Asian residents, under the Idi Amin regime, in the early 1970’s. AH’s medical history showed signs of non-specific arthralgia, raised calcium levels and Type 2 diabetes. She had been diagnosed with carpal tunnel syndrome. She did not smoke, nor did she drink alcohol.
In early January 2020 she suffered a high fever which her doctors identified symptomatic and not causative of the cytokine/autoimmune ‘storm’ which created the “devastating” neurological damage and the pathological processes she has suffered from since. Both her treating doctors had seen similar cytokine ‘storms’ in patients critically ill with Covid-19 although neither has seen damage as extensive as that sustained by the applicant. All agreed that it was in consequence of this ‘storm’ that there had been such “extensive damage” to the nerves and to the muscle as well as to the brain.
By 4th January she was being considered for transfer out of intensive care. Later that day the process of ventilatory weaning was started. But in December 2020 she was back in critical care, requiring renal dialysis, ventilation and sedation. By February 2021 a biopsy revealed necrotising myopathy and severe loss of peripheral motor nerves. She remained intubated.
From the beginning of February, when she was said to show occasional tongue movements and definite signs of improvement but still no response to pain, things gradually evolved. However a biopsy in March 2021 reported, inter alia, that
To all intents and purposes the peripheral motor nerves effectively have little to no remaining function.there was a dawning realisation amongst the treating team that with AH’s slight but significant improvement in awareness came a visible and marked increase in her distress
The question before the court was whether AH’s ventilatory support should continue. She is no longer infected with the virus. What was in focus was the neurological impact of the virus on AH’s brain. The judge had to consider the following points:
i. In the absence of capacity how long should a patient endure an extremely challenging neurological state to allow her clinicians and family to reach a best interests decision?
ii. Where the treating clinicians feel that both CPR and re-escalation of care are inappropriate. but the family are resistant, and divided, how should [they] come to a conclusion about her best interests?
iii. Whilst these matters are slowly resolved, [were they] acting unethically in continuing to treat her which, in effect, was merely preventing her from dying from the brain injury she sustained in January?
Necrotising myopathy, observed the judge, is arguably the most severe of the four pathologies. There was no dispute that there would be no recovery of the muscle, which is further compromised by the lack of nerve supply. This condition gives rise to a “particularly cruel and insidious type of pain”, in the words of one of AH’s examining neurologists.
The Court’s conclusion
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.
Every single professional involved in AH’s care had reached the same conclusion i.e. that continued ventilation was not in her best interests. There was “no dissenting professional voice”. One of her doctors described “the burden of the ventilation on AH as the equivalent of being compelled to run a marathon every day”
Furthermore, AH’s treating clinicians were concerned that if her consciousness level improved,
she may become increasingly aware of her condition and its consequences and that her distress would worsen.
In Heyden J’s view there is universal professional consensus on this important point:
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.
Continued ventilation outside the ICU was “decidedly not a safe option”, and therefore he ordered that ventilation should be discontinued by the end of October 2021