“This case has been subject to egregious delay. It has throughout been a case in relation to serious medical treatment given that FHR was assessed as being in PDOC vegetative state in 2020.”
“No one shall be subjected to torture or to inhuman or degrading treatment or punishment.”
“(i) What is [P's] current condition? What is [P's] level of consciousness or cognisance? What is [P's] awareness of the world around them? (ii) Does [P] have the mental capacity to make a decision about the continuance of CANH? If assessed to lack capacity presently, is there a prospect that they could develop the capacity to make that decision? (iii) If they lack capacity, is it in their best interests that the court should confirm the continuing delivery of CANH? In answering this question, the court should consider: (a) [P's] previous stated views on life-support, and on sustaining life artificially, in the event that they are totally dependent on others, and incapable of functioning in many essential domains of their life; (b) The quality of [P's] life at present; whether there is any or any significant enjoyment in their life; whether they experience pain and/or distress, and if so how that is managed; (c) [P's] prognosis if CANH were to continue for the foreseeable future; whether there is any real prospect of recovery of any of their functions and improvement in the quality of their life; (d) The prognosis for [P] if CANH were to be discontinued: what would the palliative care package include, in the event that the CANH were to be discontinued, and where would her palliative treatment optimally be delivered (i.e. would P need to move from their current residential care home?); (e) The prognosis for [P] if the court were to authorise the discontinuance of nutrition but not hydration; (f) The views, wishes and feelings of the family and [P's] carers; (g) [P]'s dignity; (h) The sanctity of life generally.”
“However, more recent case law (Aintree v James[2013] UKSC 67 , Briggs v Briggs[2016] EWCOP 53 ) has brought a change in focus, the emphasis no longer being on the likelihood of regaining consciousness, but on whether a patient could ever recover a quality of life that they personally would value. Best interests discussions are therefore centred on a discussion of the patient’s prior beliefs and values, and the predicted ‘best’ and ‘worst case’ scenario for recovery in terms of regaining ability to function independently, to communicate or interact at any level.”
“The court should not concern itself with trying to establish the precise level of consciousness, for example, whether FHR is in a vegetative or a minimally conscious state, because these categories are invalid, with no evidential basis. He is self-evidently unconscious. No responses have suggested any evidently purposeful, consistent behaviours. No responses have suggested he extract significant meaning from complex environmental stimuli.”
“The early brain imaging studies of FHR showed changes associated with severe cerebral hypoxaemia. The presence of early cerebral oedema suggests a more severe level of ischaemia. The bilateral absence of …. somatosensory evoked potentials, coupled with the imaging evidence of severe generalised hypoxic brain injury, indicated a very poor prognosis at the outset, as the treating team recognised. The occurrence of paroxysmal sympathetic hyperactivity is another marker of the severity of brain damage and indicates damage to the hypothalamic area, in addition to other areas. There has been no reported significant change over many years. One can be certain from the evidence that FHR’s clinical state will continue to fluctuate within the envelope of responses and spontaneous actions that have been recorded over the last five years. Each observer will place their own interpretation on the observed behaviours, but nothing is going to change for the better until he dies; he may slowly decline as he ages.”
“The [Specialist Unit] can safely manage FHR’s tracheostomy alongside the palliative and end-of-life care he requires. Approximately one third of the unit’s patients have a tracheostomy. During end-of-life care, the [Specialist Unit] operates a low-intervention tracheostomy management programme focused on symptomatic care only, and avoids routine deep suction, which is a source of discomfort. Excessive secretions are instead managed with glycopyrronium, in accordance with standard palliative care principles.”
“The national guidance on PDOC says that the person with overall responsibility for best interests decisions in the community is usually the GP (please see section 5.4.3 Practical arrangements for best interests decision-making involving life sustaining treatments, in Royal College of Physicians. Prolonged disorders of consciousness following sudden onset brain injury: National clinical guidelines. London: RCP, 2020)”
“In the event, the MDT concluded that it was in FHR’s best interests to continue CANH because the report of Helen Gill-Thwaites raised sufficient doubt about whether FHR’s condition was adequately optimised for a reliable assessment, and therefore, whether the diagnosis of vegetative state (VS) was still correct - it was therefore necessary to continue CANH in order to be able to clarify that doubt. It seemed to the MDT that if we were going to believe the family (that FHR did respond to them sometimes while he was at home but then became much less responsive in VCC), then he should be moved to where, according to the family’s unanimous account, he had previously been best optimised. Therefore, having made one best interests decision (to continue to provide CANH to enable optimisation as recommended by Helen Gill-Thwaites), the other (to return home) followed logically. We therefore felt it would be helpful for the Court if we reached a decision on this issue so that the Court can see our thinking.”
“FHR to have regular reviews by an expert physician in PDOC to review his medication, specifically in respect to: Medication to optimise arousal levels. Exploration of causative factors of arousal levels Tone/ physical management needs” Exploration of causative factors of arousal levels Tone/ physical management needs”
“There was a variable startle movement to loud sounds such as clapping from behind from both left and right with no consistent head turning to the direction of sound or to voice, although on two occasions his head moved very slightly to his left in response to his father’s voice. He had a partial right sided smile when I was discussing the world cup and Arsenal with his father. This was most prominent when I mentioned Liverpool football clubs recent difficulties. This facial movement was not seen during any of the rest of the visit with his father present. There were similar but less prominent right sided facial changes suggestive of smile when his sister was talking to him.”
“The intermittent responses to spoken instructions of tongue movements, the specific smile to mention of his favourite football team (Arsenal) and misfortunes of others, that were not seen at any other time are particularly suggestive of being aware. The response were not always sustained, possibly due to fatigue, over sedation, difficulty with initiation of movements, very restricted vision and likely reduced attention. If he had been able to sustain the most complex responses that he demonstrated, more consistently, his score would be indicative of him being in a higher level of the Minimally Conscious state (i.e. MCS+). For most of the time his responses were more consistent with a low level of Minimal Conscious State (MCS-)”
“Having considered the information presented and applying the principles of Islamic teachings, the Islamic Council reaches the following Islamic ruling (fatwa): 1. On the circumstances described, it would not be permissible according to Islamic teachings to intentionally withdraw CANH from FHR where such withdrawal would directly result in his death. 2. It would not be religiously permissible for his family to consent to such withdrawal 3. The reason for this conclusion is that FHR is regarded, according to the information provided, as a living human being whose life retains its sanctity and dignity despite his condition. 4. Islamic teachings require that ordinary care, including nutrition and hydration where they remain beneficial and can be provided, continues to be offered to a living person.”
“I sit beside him. I play music for him. We watch television and documentaries. I talk to him about my day, my thoughts, our family and things that would have interested or amused him before his injury. There are occasions when I see his body relax, his face soften or his expression change. I have seen what I believe are smiles. I have seen changes in him when he hears something familiar or when somebody he loves is beside him.”
“The highest functional communicative response seen by the family is at the equivalent of [SMART 5 Mid HI] where his sister reports that if she asks him a question, he can sometimes answer “yes” by sticking out his tongue, but she has not reported to have seen a No response. At the equivalent of [SMART Level 4] various meaningful communicative responses have been reported by his mother, father and sister who feel that they can identify these subtle facial expressions as they are more familiar with him than others and they include: Moving his tongue sometimes as if he is trying to speak. Shedding a tear sometimes when his father is praying with him. A sigh when family are speaking or leaving and they feel he is trying to communicate. Looks such as relaxed, concentrating, feeling calm, and disdain. Grimace when in pain. A pout when he doesn’t like something. A smile in response to gossip.” A smile in response to gossip.”
“Based on these current findings, [FHR] is unable to actively engage in external activities, make choices or control his environment and does not demonstrate any clear signs of enjoyment in his life.”
“The summary of the motor responses seen in the sessions to address recommendation 7, 8 and 10 reveal that there was no evidence of an ability to follow any verbal instructions including “stick out your tongue”, “move head back”, or “close eyes” and no meaningful facial expressions observed when the sessions were more formal and only with the SLT and OT. However, although the family members could attend only 4/10 sessions, Anisa Cassim stated that “there is currently insufficient evidence to confirm that [FHR] demonstrates purposeful and reproducible responses to the verbal commands, "Stick out your tongue," "Stick out your tongue for 'yes'," or "Move your head." Anisa Cassim concluded that the behaviours observed “cannot be verified as purposeful responses or evidence of intentional command following at this time.””
“In conclusion, at present, based on the information gathered, he has some ability to show emotions such as a smile and shedding tears, indicating a diagnosis of MCS-. However, he has no ability to engage in activities and his responses to verbal instructions still cannot be confirmed as being potentially meaningful, since they have proven to be difficult to verify and reproduce. This could be attributed to the paucity of a stimulating environment and limited direct time with his family to promote such responses. Any future exploration of his responses would require all recommendations in Dr Allanson’s report and the SMART report to be addressed in full.”
“As per legal instruction, 10 communication assessment sessions were completed from7 July 2026 until 21July 2026. These varied in length from 20-40 minutes. FHR was seated in the wheelchair comfortably, suitably awake and environment was optimal for every session. His daily seating tolerance was reported to be 4 hours and there was no evidence of a bespoke daily programme across all sessions. An oral desensitisation programme was delivered at the beginning of each session. This did not appear to have any impact on functional ability. It was not observed to reduce or increase the spontaneous oral and facial movements. A range of verbal commands were trialled across the sessions. No verified and reproducible auditory command following was observed on any occasion. The only consistent pattern observed was the increased amplitude of the stereotyped spontaneous facial movements (eye blinking, mouth closure/lip pursing, tongue thrust) that occurred on episodes of auditory input. This appeared to be part of a generalised auditory startle response. This was observed in response to speech and environmental sounds. Facial expressions observed (frowning) were spontaneous or reflexive in nature as part of physical posturing pattern or in response to physiological trigger such as secretion accumulation. In summary, FHR did not demonstrate any evidence of auditory comprehension (and subsequent instruction following) or any communicative intent. All behaviours observed were reflexive in nature, in line with a diagnosis of vegetative state.”
“Overall, the findings from this assessment provide no evidence of purposeful or reproducible responses to verbal commands presented by either the family members or me. The commands assessed included "Stick out your tongue," "Move your head," and "Stick out your tongue for yes questions" presented during the assessment. During Session 2, a possible meaningful response was queried during interaction with FHR’s father. FHR’s father presented the verbal commands, “Stick out your tongue if you love me” and “Stick out your tongue if you would like me to visit more.”
“Despite hours of assessments at significant cost and effort. FHR does not reliably and consistently have the ability to indicate ‘yes’ and more importantly to indicate ‘no’. After 6 years and 6 months, there can be no dispute, that this status will never change. 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.”
“even if FHR survives 10 years, given that he is for antibiotics and hospital admissions, which will mean FHR will endure this suffering and total loss of autonomy for far too long.”
“Her [the Official Solicitor] reasons for taking the position she does in relation to the treatment decision will be explained in oral submissions. However, to assist family members, in brief summary she has reminded herself that the standard of proof is the balance of probabilities but also noted that as Art 2 is engaged, the Court will wish to apply anxious scrutiny. In that context, she notes in particular: a) The clear evidence that FHR probably experiences pain/discomfort when a stimulus capable of causing pain/discomfort is applied; b) The evidence that his contractures have worsened over time; c) The nature of his current care regime which includes care which is likely to give rise to stimuli causing pain/discomfort; d) The lack of clear and compelling evidence that he is aware of the presence of family members and intentionally responsive to or communicative with them; e) The lack of clear and compelling evidence that he derives any pleasure from his current existence; f) The lack of evidence that there is a real prospect of significant neurological improvement in awareness.”
“For both VS and MCS, the likelihood of significant functional improvement diminishes over time, although the prognosis for recovery is more heterogeneous for MCS than for VS. In both VS and MCS there are isolated reports of recovery of consistent consciousness even after many years, but these are a rarity, and inevitably those who recover remain profoundly disabled.”
“If the patient remains in chronic VS/MCS for more than 6 months without any evidence of a trajectory towards improvement, they may be diagnosed as being in permanent VS/MCS. This diagnosis should be confirmed by an Expert PDOC Physician who completes the form in Annex 2f, and this information entered in the national registry. At this stage, the reasonable hope of recovery is no longer applicable and the balance of benefits and harms swings further away from active treatment.”
“The BMA guidance further states “The longer a patient remains in VS or MCS following sudden-onset brain injury, the less likely they are to emerge and the shorter their life expectancy. In time, therefore, patients will stabilise, and the situation becomes clear. At this point, outcome may be predicted with a greater level of certainty, so a shorter and less detailed assessment is warranted”. 6.5 years after a catastrophic hypoxic brain injury, there can simply be no justification for further testing, and CANH decisions must be based solely on best interest discussions and balance of benefits over burdens of ongoing treatment. Further testing will cause delay, of which there has been plenty already. Despite hours of assessments at significant cost and effort. FHR does not reliably and consistently have the ability to indicate ‘yes’ and more importantly to indicate ‘no’. After 6 years and 6 months, there can be no dispute, that this status will never change. 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.”
“Spending more time, effort and resources, and tinkering with his medications when he has a catastrophic brain injury are meaningless. Just as carrying out further SMART assessments, which when inconclusive, will be blamed on a certain precondition or preconditions not being met.”
“It is therefore not possible to know with any confidence whether MP would have wished to have continued living in his massively diminished state. The Court of Appeal is clear that in those circumstances I should not speculate.”