M Children's Hospital NHS Foundation Trust v Y

MR JUSTICE COBB: T was born in November 2000 and he is therefore 13½ years old. A little under three weeks ago, T was a fit and healthy boy. Now, as I deliver this judgment, he faces extraordinary and profound disabilities and serious and potentially catastrophic ill-health as a result of suffering a post-infectious cranial and spinal demyelination, also known as “Central nervous system demyelination” (“CNS Demyelination”).

Post-infectious CNS demyelination is an immune mediated inflammatory disease of the brain, usually occurring during or following a viral or bacterial infection in children or adults. The inflammatory process of this condition in which the body’s immune system mistakenly attacks its own brain tissue damages the protective covering around the nerve fibres. The treatment of CNS revolves around suppressing the inflammatory process.

T is currently at M Children’s Hospital desperately unwell, and urgent decisions are required in relation to his future treatment. Application is made by M Children’s Hospital NHS Foundation Trust for the Court’s authority to be able to administer treatment. That treatment is for present purposes controversial. The treatment described is PEX treatment, plasma exchange treatment. The purposes of this procedure is to “filter out” any auto anti-bodies from plasma which are thought to be the cause of neuronal damage causing the demyelination. PEX is considered to be the gold standard, so I am advised, in auto anti-body mediated demyelination treatment but is more invasive and includes the use of blood products like human albumin, fresh frozen plasma, clotting factors and sometimes blood transfusion. The evidence-base for the use of PEX treatment in children is limited but extrapolation from adult studies and the consensus view of experts is to use it in the early phase of the disease to aid recovery and offer a significantly higher chance of a better outcome. PEX treatment is usually carried out in a controlled environment in a paediatric intensive care unit, in this case by an expert team.

This treatment is as I say controversial in this case because the mother is a Jehovah’s Witness and finds herself unable, by virtue of her religious principles, to consent to this treatment. Neither the mother nor the father are present at the hearing before me today which has been arranged as an urgent application at extremely short notice. They were notified yesterday of the likely application of the Trust and indicated then that they were aware of the proposed treatment, were not apparently opposing the application formally, commented that they were not “happy” about the treatment but recognised that it was necessary. In a further discussion this morning between the parents and the Governance Facilitator for the Patients’ Relations Team, the parents confirmed again that they were aware of an imminent hearing and did not feel that they had anything material further to contribute to the discussions. Whilst they did not oppose the application, they were unable formally to consent due to the mother’s faith, but both parents indicated that they were in these circumstances content that the Court should make the relevant decision.

The application is supported by a witness statement of Dr S, the consultant paediatric neurologist at the M Children’s Hospital, NHS Foundation Trust. He is a doctor of considerable experience and expertise, and he is the on-call paediatric neurology consultant managing the care of T. He describes in his statement how T presented on 9 July, some eight days ago, to the P Hospital with a ten-day history of flu-like symptoms. He had been prescribed oral antibiotics for a suspected tonsillitis. The persistence of those symptoms caused x-rays to be taken which revealed a left lower lobe infection. Regrettably, T’s condition deteriorated, and deteriorated extremely quickly. On 9 July he was found to be profoundly unwell. He descended into significantly depressed consciousness and displayed symptoms of hypertension, bradycardia, six cranial nerve palsy, decreased urinary retention, and was flaccid and areflexic in his lower limbs. Swift attention to his critical medical needs caused him to be transferred to the M Children’s Hospital and an MRI scan performed on him urgently revealed the abnormalities to which I have earlier made reference, namely the cranial and spinal demyelination.

Various treatments have been attempted to arrest the development of this condition with regrettably limited effect. Intermittently, T is awake, periodically he dips into unconsciousness and is unrousable. He is fed currently by nasogastric tube he is NIV dependent and has a significantly abnormal neurology. Although steroid treatment has improved minor improvements only in his condition, there remains, I am advised, a high chance of long-term neuro-disability which may include lower limb weakness and spasticity, neuropathic bladder and bowel and impaired sexual function. It goes without saying that such long-term consequences of this illness would have a major impact on the long-term prospects for T, his independence, his self-esteem, his quality of life and his life expectancy.

The clinical team treating him considered that to maximise the chances of T’s recovery, the next line of treatment would be the plasma exchange which I referred to earlier. Such treatment, if it is to be provided, needs to be performed at the earliest stage of the illness whilst the inflammatory process is potentially reversible, that is to say usually within two weeks of the onset of symptoms, ideally sooner. My short summary of the chronology thus far reveals that for T the optimum time for this treatment may indeed already have passed.

T himself has been apprised of the possibility of this treatment during a visit by his consultant team at a time when he was awake. His consultant discussed with T the cause of his illness, available treatment options and potential use of blood products. When asked for his view as to the use of plasma exchange treatment, T is reported to have nodded his head in agreement with a “thumbs-up” to go ahead with this treatment. The consultant recognised, in my judgment entirely appropriately, that given the fluctuations in T’s consciousness levels generally and specifically during that day, “it would be difficult to be absolutely certain about his competence to give consent”.

I am advised that the unanimous view of the team is that plasma exchange is the best form of treatment for T. Although the team cannot be certain that the long-term outcome will be improved, it is felt that not providing best practice therapy, denies T the best possible chance of recovery.

In resolving this application I must decide what is in T’s best interests attaching paramountcy to his welfare. I must also look at the application from the assumed view of T and approach determination of this issue with the strong assumption that treatments which would be designed to prolong and enhance the quality of life should be, wherever possible, attempted. T’s best interests encompass not just his medical best interests but his emotional, familial and social best interests.

I recognise the powerful competing consideration prevents T’s mother (by virtue of her adherence to the tenets of the Jehovah’s Witnesses) from consenting to the treatment which I am invited to authorise. I recognise, and respect, the exquisitely difficult conflict with which the mother herself must be wrestling: trying on the one hand to be faithful to the tenets of her religion but facing the quite dreadful prospect of her son’s deteriorating health. I recognise too that the treatment is not without its risks. The PEX treatment takes about 2 to 4 hours, it involves inserting a central line in a large vein and I am advised the usual policy is to carry out five days of PEX treatment, clinically re-assessing the patient throughout. There is, so Dr S tells me, a small risk of allergic reaction to the blood products, albeit medications may be given prior to this to minimise the risk. The exchange of large volumes of plasma may cause shift of fluid which can lead to changes in blood pressure and breathlessness and I am told the vital signs are therefore carefully monitored throughout the procedure. As the procedure filters out the antibodies, the patient immunity decreases significantly and there is a high risk of infection but, this is also carefully monitored with the PICU.

The potential benefits to T of this treatment are perhaps obvious from my summary of the evidence from Dr S already reproduced in this judgment. Indeed, without this treatment, the prospects for T of recovering very much from where he currently lies is slight. In my judgment, and taking account of the risks advised, and the views of his mother, I am nonetheless clearly of the view that it is in T’s best interests that he should receive this treatment and should receive it immediately in order to give him the best possible prospects of recovery.

I therefore will authorise the M Children’s Hospital, NHS Foundation Trust to commence immediately the PEX therapy, to include the administration of blood and/or blood products and that that may be done without the consent of his parents in a situation which is immediately life threatening.

Given the views of his mother in particular, and also the obvious interest of his father, as the treatment progresses, in any situation which is less than imminently life-threatening the Trust must consult with T’s parents and consider with them all alternative forms of management which may be suggested from time to time by the parents to the administration of blood and/or blood products.

However, in the event that those medically responsible for T conclude after such consultation that there is no reasonable alternative to the administration of blood and/or blood products I authorise that they be at liberty to administer such blood and/or blood products without the consent of T’s parents.

That is my judgment. Given the urgency of the situation, the order will take effect forthwith notwithstanding the fact that it has not yet formally been perfected or sealed.