NHS North East London ICB v FHR

Summary

FHR, aged 28, sustained a catastrophic hypoxic brain injury in January 2020 when he tried to hang himself. He had been in a prolonged disorder of consciousness ever since: cortically blind, mostly paralysed, PEG-fed, with a cuffed tracheostomy requiring deep suctioning every half hour, daily digital rectal evacuation and worsening contractures.  He was cared for at his adapted home by an ICB-commissioned package from August 2020 until April 2025, when – in the third set of Court of Protection proceedings about his residence and care since December 2020 – he was moved on an interim basis to a care home so that a PDOC assessment could be undertaken. Since then he had five emergency hospital admissions for infections. The serious medical treatment issue was only transferred to Tier 3 in October 2025, prompting King LJ, refusing permission to appeal, to describe the case as having been “subject to egregious delay” (paragraph 22). McKendrick J was blunter still: the proceedings had been “highly charged and over-litigated” and “at times [FHR] has been lost in the litigation” (paragraph 4).[1]

By the final hearing FHR had undergone 12 CRS-R, 23 WHIM and 2 SMART assessments. Much of the three days of evidence was consumed by a dispute as to whether he was in a vegetative state, MCS- or MCS+, which the judge found “doctrinaire” with “more than a hint of professionals following their own beliefs” (paragraph 9). The single joint expert on awareness, Ms Gill-Thwaites, had found a vegetative state on SMART assessment in January 2026 but flagged an unverified response to “stick out your tongue”; after a court-directed programme of optimisation and further testing, command-following could not be verified, but two episodes of tears and a smile in the presence of family led her to revise the diagnosis to MCS-. Dr Allanson, engaged to carry out one of Ms Gill-Thwaites’ recommendations, but sent a letter of instruction by the mother’s solicitors which went well beyond it, concluded that FHR was minimally conscious with “some chance” of change, and recommended a medication review, a trial of neuro-stimulants and removal of the tracheostomy. Dr Nair, the single joint expert on best interests, considered FHR to be in a permanent vegetative state with no trajectory towards emergence, that pain must be assumed, and that “it is the giving of daily digital rectal evacuation, half hourly-to-hourly deep tracheal suctioning, frequent hospital admissions and ongoing CANH that must be justified and not the withdrawal” (paragraph 117). Professor Wade, the ICB’s clinical adviser, was admitted as a witness with expertise rather than a Court of Protection Rules expert (paragraph 46) and supported Dr Nair. A best interests meeting in March 2026, chaired by an independent palliative care consultant, had concluded that CANH should continue to allow optimisation and a return home; its chair told the court that the conclusion was provisional and the decision was for the court.

FHR was a Muslim from a close family. His mother exhibited a fatwa from the Islamic Council ruling that withdrawal of CANH would not be permissible (paragraph 76). His father said he could not say his son would want to continue living in his current condition, and that a young man who had taken pride in his appearance and independence “would have found a life in which he was dependent on others for every aspect of care […] very hard to accept,” before counterbalancing that with the importance of his faith (paragraph 87). His sister made an impassioned plea for more time.

McKendrick J concluded that CANH was no longer in FHR’s best interests (paragraphs 1, 126). Preferring Dr Nair’s evidence, he found it more likely than not that FHR was in a permanent vegetative state; but if he was in MCS- it made no difference and “may even make for a stronger best interests case” because it would increase his awareness of pain, discomfort and the futility of his existence (paragraph 134). He experienced pain; he was subjected to an arduous care regime; and there was no reliable evidence of awareness leading to joy, comfort or pleasure:

… Love has the power to impair our objectivity. There is no reliable evidence before the court of awareness leading to joy, comfort or pleasure. No witness has explained how it is that FHR cannot stick his tongue out when asked, but he has the awareness and cognition to be able to produce the emotions necessary to cry when his father speaks to him of Allah or to smile when his football team is mentioned. I am satisfied these are not meaningful responses but are reflexive. (paragraph 143)

The judge accepted that FHR would want his life and death to take place within the teaching of Islam and that family mattered greatly to him, but, adopting Lieven J’s approach in NHS West and North London ICB v MP [2026] EWCOP 36, would not speculate as to whether he would have wished to continue living in his massively diminished state (paragraphs 145-147). The family’s largely unchallenged evidence of responses was their perception, shaped by love. To continue CANH even for six to twelve months of further testing was “wrong in principle and wholly unfair on FHR” (paragraph 126). A s.16 order was made for palliation at a specialist unit able to manage the tracheostomy, with permission to apply for it to be varied so that FHR could die at home, which the judge hoped could be achieved (paragraphs 153-155). The transparency order was directed to be discharged 21 days after his death.

Comment

Three key things stand out. First, the judgment is a forthright application of the post-Aintree orthodoxy, echoed in the RCP 2020 Guidelines and in NHS North Central London ICB v PC [2024] EWCOP 31, that the VS/MCS label is not the question; the trajectory and whether P could ever recover a quality of life they would value is. But it goes a step further. The ‘double edged sword’ reasoning at paragraph 134 – that greater awareness, in the presence of pain and no prospect of improvement, strengthens rather than weakens the case for withdrawal – inverts the intuition, common among families, that any sign of consciousness is a reason to carry on. Practitioners should expect that argument to be deployed in future PDOC cases.

Second, in relation to evidence, an ICB may rely on its own clinical adviser without appointing him as an expert under the Rules (ss1, 3(2) of the Civil Evidence Act 1972).  A clinician engaged to carry out one of the single joint expert’s recommendations reports to the single joint expert, not to the party who sends a letter of instruction, and one who writes to the judge directly after listening to the opposing expert risks the finding, however gently expressed, that she may have inadvertently “transitioned from clinician to advocate for the family” (paragraph 128).[2]  And a best interests meeting under the RCP Guidelines which concludes in favour of continuing CANH so that further testing can take place does not bind the court, particularly where the chair accepts its conclusion was provisional.

The third key point relates to the delay.  FHR was diagnosed as being in a vegetative state in 2020. Three sets of proceedings about residence and care followed before anyone squarely raised the treatment question, and only in October 2025 was the case recognised for what it had always been. Where CANH for a PDOC patient is, or is likely to be, contested, that issue must be identified and listed at the outset rather than allowed to sit behind disputes about where P lives and who cares for him. The fatwa is also worth noting: the court accepted FHR’s faith and its relevance under s.4(6)(b) MCA, but a religious ruling that withdrawal is impermissible was not treated as evidence of what FHR himself, confronted with his actual circumstances, would have wanted.

[1] McKendrick J took the unusual step of setting out in an appendix the procedural history of the case.

[2] McKendrick J’s allusion to the debates having become “doctrinaire” is perhaps rather harsh, but we are aware that there can be some very strong feelings at play amongst clinicians working in this area.  They echo (in our experience) some of the debates that can arise in relation to eating disorders, where disagreements about apparently narrow technical points can mask much more fundamental – often ethical – disagreements.  It is not obvious to us that these disagreements are well suited for resolution in the court room.