S, Re

This matter came before me on 14th March 2016. The case had been listed for a final hearing to determine the best interests of S. The family of S were keen to resolve the issues surrounding her consciousness, but reluctantly on that occasion I ultimately agreed to an adjournment.

S was generally a physically healthy young person, but it is clear that her life has been dogged with a depressive illness that has re-emerged, from time to time, and darkened her days and those of her family. Her mother, Mrs D provided a moving statement in which she emphasised that when S was well she was an extremely outgoing person; vibrant, she said, and extremely popular. She also had a caring and kind temperament. She loved music, in particular, and she greatly enjoyed going to festivals to see bands. She has two children, whom she cared for deeply and whose love is manifestly reciprocated, as I have seen, by the information that they have put before me in relation to their mother's wishes. She could also be independent and strong willed, but her mother tells me she was, on any view, an extremely complex personality and vulnerable, even though she took care, whenever possible, not to display it.

She has had a history of alcohol abuse since her teenage years. Her mother said she could not cope well with the world. Although she thought she could control her alcohol consumption, she plainly, her mother said, could not. She thought that drinking and drug abuse gave S some respite from the demons that appeared to haunt her.

At the age of 38, on 21 ^st August 2012, S took glucoside: a drug that causes blood glucose to drop. This may have been accidental or deliberate, and it may have been in association with other drugs. It is possible, the doctors consider, that she may also have had some secondary epileptic seizure contributing to what was a very significant hypoxemia, that is to say a reduced level of blood oxygenation.

She was found unconscious and admitted to the Furness General Hospital where investigation did not show any other specific cause for her coma. Her CT brain scan, two days after the event, showed evidence of cerebral swelling. After her acute management she had a tracheostomy put in place, which was later followed by a gastrostomy. Subsequently, on 29th October 2012, she was discharged to a nursing home where she has remained, apart from one protracted period in a neurological rehabilitation centre between 24th June and 29th August 2014, and some shorter periods in hospital. The tracheostomy was withdrawn in February 2013.

Since her initial admission she has not shown any behavioural evidence to suggest that she is aware of herself or her environment. She has had one full formal assessment using the recognised SMART framework in 2014, and she has had several other formal assessments undertaken by a number of doctors. None of these has shown any evidence of awareness. Furthermore, a review of the nursing records failed to find any report of behaviours that would definitely indicate awareness, and the family is insistent that their mother is, in every real sense, no longer with them.

By the time the case came before me on 14th March it was therefore understandable that the family were pressing me to make a declaration that the medical treatment, and, in particular, provision of artificial nutrition and hydration, should be withdrawn. It was not for them a sense of protracting the agony or the pain for S, it was a question of protecting her dignity and of respecting the person whom she had been.

The Official Solicitor was, on that occasion, extremely conscious of the distress that would be caused to S's family by further adjournment, but it was submitted, on his behalf, that in the light of a reference seen in the medical records regarding the possible sedating effect of S's medication, that the issue as to whether that medication could, in effect, be obscuring her true state of consciousness should be conclusively resolved.

On 5th January the treating clinician, Dr Footitt (Consultant Neurologist), set out his view that S was on two medications that might have a meaningful effect on her level of consciousness. The chances of identifying behaviours indicative of a state of minimal consciousness, rather than the vegetative state that appeared to be presented by the broader canvas of evidence, should be investigated. He concluded that there was a one to two per cent chance of those medications effectively obscuring the picture.

Further questions have been asked by the Official Solicitor of Dr. Footitt, in particular, on 19th January, including his views about withdrawing the medications and as to whether the medications were in place during the SMART assessment. Dr. Footitt explains that having reviewed the records again he realised that S had been taking one of the relevant drugs during the course of the SMART assessment, and accordingly considered that this should be looked into further before coming to absolute conclusions.

The Official Solicitor had instructed Mr. Derar Badwan, Consultant in Rehabilitation Medicine, on 22nd January 2016, Mr. Badwan being one of the acknowledged experts in this specialism. The Official Solicitor had requested a limited independent report, on the papers only, addressing the particular issues of whether the medication should be withdrawn and further assessments carried out. He was not asked to read the medical records in full nor to visit S, but he concluded that the diagnosis of PVS was "questionable" in the light of his perusal of a summary of the medical records and the fact of the sedating effects of the relevant drug and pain relief medicines. He noted that a critical question was whether the sedating medications were withdrawn during the period of the SMART assessment, and he stated that the diagnosis required further investigation since, by that stage, the SMART assessment was 18 months earlier and arguably too dated.

The family are critical of the delay that has taken place in the resolution of these issues. They feel strongly that such delay was avoidable and, as I have alluded to already, they consider that S’s dignity was avoidably compromised in the interim period.

I have found it difficult to understand entirely why this process has taken quite as long as it has. Given that, ultimately, all the parties have been able to agree on the way forward, I have not been required to investigate the reasons. It needs to be stated that the avoidance of delay in medical treatment cases is an important imperative, as I have now said in a number of judgments. This is not to say that assessments ought to be rushed or that delays may not sometimes be clinically purposive, but respect for a patient’s autonomy , dignity and integrity requires all involved in these difficult cases to keep in focus that these important rights are compromised in consequence of avoidable delay. Those who are beyond pain, understanding or without any true consciousness require vigilant protection of their rights and interests, all the more so because of their unique level of vulnerability. Equally I cannot over-emphasise the importance of listening to the family who ultimately know the patient’s personality best. That is not to say that their wishes and views should be determinative, but it is extremely important that they are heard and their observations given appropriate weight.

As I say, there was very little alternative for the court in March other than in those circumstances, given the state of the expert evidence, to adjourn further. I now have the report of Mr. Badwan. I also have a report from Prof. Derick Wade, Consultant in Neurological rehabilitation, another distinguished expert in this area, and I have the report of Dr. Footitt, the treating clinician. There is unanimity as to the way forward. Professor Wade saw S on 1st May 2016. By that point the medication had been reduced as far as it was possible to do so. Professor Wade found no evidence at all of any awareness. There was evidence of intact primary visual pathways, primary auditory pathways, primary somatosensory pathways and primary motor output pathways. He was clear that there was no other plausible cause for her clinical state than that which I described at the beginning of this judgment, and was equally clear that there was no evidence of any factor that can be reversed causing, or exacerbating, her severe loss of awareness.

He concluded that S was in a permanent vegetative state. He was entirely satisfied that no further investigations or assessments are required, and sadly that no further treatments are possible. Preserved artificially in this way S could ‘endure’ for a further nine years.

I have listened carefully to what her family have said about her wishes and I have no hesitation in concluding that she would profoundly have wished to terminate such a situation. Of course in this case, where a patient is in a permanent vegetative state, identifying ‘best interests’ is a clearer exercise.

Mr. Badwan concluded that the only inconsistent observation was an occasion in which a member of the nursing staff (a healthcare assistant) observed that S flexed her body and appeared to vocalise as well as fixate. This is an observation that was not seen by any other member of staff and probably would indicate, in Mr. Badwan's view, a misinterpretation of S's behaviour at the time. In N v N [2015] EWCOP 706 I observed that consciousness can be a somewhat elusive concept and that awareness “is not reducible to a test or clinical sign and will frequently contain what may be a significantly subjective element”. I also commented that the assessment tools have an inevitably subjective complexion to them as well. I finally emphasised that professional enthusiasm and determination are admirable qualities, but it is important to guard against overly optimistic assessment driven by a vocational desire to make a difference.

I have little difficulty in accepting the unanimous view now of all the experts here. Mr. Badwan put it thus, in view of the factors that he has identified and that I have outlined:

When a person from whom it is proposed to withdraw artificial nutrition and hydration is in a minimally conscious state there must be an evaluation of her best interests, identifying and weighing the advantages and disadvantages of withdrawal and continuation. This is often referred to as the ‘balance sheet’ approach, see Thorpe LJ in Re A (male sterilisation) [2000] 1 FLR 549 . Though again as I observed in M v N (supra), not all factors will have the same significance. Thus each factor must be considered separately and given its own appropriate weight, see Re F (a child) (international relocation cases) [2015] EWCA Civ 882 , per Mc Farlane LJ at para 52.

All this considered it has to be realised that once it is established that S is in PVS (as is now beyond any doubt) it is axiomatic that treatment is futile.

On 12th May, having received all the reports consequent upon my earlier directions, I was asked to approve declarations:

Having indicated to the parties that, in the light of the consensus and having read the reports, I was prepared to make those orders, I also indicated that I would deliver this short extemporary judgment this morning. Decisions of this magnitude, even where they reflect medical and family agreement, require that they be available for public scrutiny, they concern us all. No party has attended, none was required to.

By way of postscript, and because I note that the press are represented in the court room, I indicate that the reporting restrictions that restrain the patient’s identity being placed in the public domain are to continue throughout the remainder of her life and, following her death, are to endure for a further eight weeks. Thereafter, any application to extend reporting restrictions, at such point, should be listed expeditiously before me and on notice to the press.