Re GTI

Summary

GTI was a 45 year old man, with an established history of schizoaffective disorder. It had been controlled with psychotropic medication and he has lived in supported accommodation in the community.  His daily routine included preparing meals, shopping, socialising in the pub, cooking and watching television. However in January 2020, during what appears to have been a paranoid episode, he appears to have stabbed himself in the neck causing significant damage to his recurrent laryngeal nerve.  The neurological damage had affected his swallowing reflex and he was now unable to take food or drink orally without significant risks of aspiration, with food and drink passing into the lung. That carried with it the risk of recurrent aspiration pneumonia and physical asphyxia leading to respiratory arrest.

GTI had been taken to hospital after he had stabbed himself, where he had initially agreed to the insertion of a percutaneous endoscopic gastrostomy ('PEG').  However, his position then changed (after he had been detained for assessment under s.2 MHA 1983), and the operation did not go ahead as there were concerns about its legality.   He was then transferred to a mental health unit with a naso-gastric ('NG') tube in place. He pulled this out within 24-hours of admission and was given leave under s.17 MHA 1983 to go to another (physical health) hospital.  Numerous  attempts had been made to encourage GTI not to interfere with his total parenteral nutrition ('TPN') lines and to agree to the PEG insertion but without success. He had been able on two occasions to drink water from a tap whilst having a shower and obtained a piece of chocolate. He was now supervised permanently by two mental health staff which is plainly highly intrusive.

GTI did not accept that he was unable to eat or drink normally. These seem to be perhaps two of the significant pleasures in his life but he is unable to accept the risks of aspiration or asphyxia. Since the injury he has been fed either by NG tube or directly into his bloodstream by TPN but GTI is resistant to these measures which are in any event only ever contemplated as temporary measures. He has removed several NG tubes and TPN lines inserted to feed him.

By the time of the application to the Court of Protection in May 2020, he had lost some 30% of his body weight.   Further, his clozapine medication which the evidence suggested had kept his schizoaffective disorder well-controlled has had to be stopped because he had begun to develop agranulocytosis, a well-recognised adverse side effect of clozapine. The development of this side-effect was caused by his deteriorating physical condition associated with the lack of nutrition.

At a clinical decision-making meeting which took place on 20 May 2020 the conclusion was reached that the insertion of a PEG was in GTI's best interests. The decision was then taken to issue proceedings in the Court of Protection in order to seek the court's authorisation for that operation on the basis that GTI lacked capacity to take the decision himself and that the consensus of all present was that it was in GTI's best interests to urgently undergo the insertion of a PEG. The clinical team hoped to carry out the procedure on the afternoon of 22 May.

The Official Solicitor was notified of the application on 21 May, and the application came before Williams J on 22 May, who heard it remotely by Zoom.  GTI had told the Official Solicitor that he did not want to participate in the hearing. The same was also true of GTI's mother.  It was clear that GTI did not want a PEG, making clear to the solicitor instructed by the Official Solicitor that he viewed it as intrusive and holding "a strong belief that he could if given the opportunity eat and drink normally. He expressed the view that imposing the procedure on him was reminiscent of the behaviour of dictators and was not the sort of thing that was acceptable" (paragraph 22).   GTI's mother did not want to take a position which set her against GTI's wishes. She hoped that ultimately the court would take responsibility.

As to capacity, Williams J declared himself satisfied that:

45 […] GTI currently lacks capacity to take a decision for himself. The overwhelming weight of the evidence supports the conclusion that GTI is either unable to understand the information about the risks or his inability to take food or drink by mouth or that he is unable to use or weigh that information. These functional deficits are a consequence of his schizoaffective disorder; perhaps in part because the persecutory nature of the disorder leads him to question the reliability of the medical advice or perhaps in part is because of concrete thinking which prevents him considering alternatives to his own formulation of his situation.

Importantly, Williams J did not stop there, but considered (as is not always the case) whether any practicable steps could be taken to support GTI to make his own decision, but concluded that:

45 […] There is no means by which he could currently be enabled to make a decision save perhaps by authorising the treatment in order to restore proper nutrition and thus enable the resumption of the administration of enteral clozapine. On the evidence currently available it is possible to say that the current lack of capacity is likely to endure for some months if not years if his previous history of adapting to necessary change is an indicator.

Turning to best interests, Williams J set out in some detail the medical evidence, and also GTI's wishes, before:

Drawing all of the various threads together in relation to whether it is in his best interests I conclude that it is. I say that because

a) The medical evidence makes it clear that GTI cannot receive adequate nutrition through eating or drinking nor by any alternative means.

b) If he does not receive adequate nutrition his decline will continue his malnutrition will worsen and he is at risk of dying from starvation.

c) The evidence demonstrates that GTI does not wish to die but that he derives pleasure from his life; not just eating and drinking but various aspects including socialising and his interests in cars and music.

d) In order to restore his mental health he needs to be able to resume taking clozapine which he will only be able to do if his physical health recovers such that his body is able to handle its administration without the risk of agranulocytosis.

e) Although his mother does not wish to oppose GTI's expressed wishes I feel confident that she wishes him to improving his physical and mental health and that the idea of him dying of malnutrition / starvation would be profoundly distressing for her which he would not want her to suffer.

Williams J was clearly troubled by the fact that he was making a decision that was going against GTI's expressed wishes, noting at paragraph 60 that he was:

particularly conscious of the insult to GTI's personal autonomy of imposing a medical procedure on him against his wishes. Although I am satisfied that he lacks capacity to make the decision it is he who has to live with it not I. I take seriously what he said to Mr Edwards, not only the fact of the PEG being intrusive, but more importantly, that the state overriding his wishes and imposing a medical procedure on him would be experienced by him as a gross insult to his personal autonomy and dictatorial. How would I feel were that to be done to me I ask rhetorically. Of course, it is almost impossible to provide an answer given that the situation GTI finds himself in is beyond my ability to truly understand. If I were to suggest that I might feel angry and violated I doubt that it does justice to GTI's position. However there is another side to this from GTI's perspective I think. I do note though that GTI said his mother means the world to him. I also see that he speaks positively about his life prior to his injury. He enjoyed socialising and would like to expand his circle of friends. He aspired to meeting a partner. He emerges as an intelligent and articulate man who has much to live for. I do not believe that he wishes to continue on a slow decline towards malnutrition, starvation and death. I do not believe he would dream of putting his mother through that appalling process. I believe he would wish to resume as good a life as was possible given the cards life has dealt him. That appears to have been his attitude before and the evidence of those who have been involved with him for some years appears to support the likelihood of him adapting and making the best of his situation again. Thus, whilst I accept that in approving the carrying out of this procedure I am overriding his wishes, I believe that in the short, medium and long term it is the best course for him and I hope that at some point in the future he might (even if only to himself) see that was so.

Finally, and in a helpful reminder of where the buck stops, Williams J noted that:

61. The Court of Protection exists to take decisions such as this. It not the decision of the hospital or any of the members of staff, nor that of GTI or his family or of the Official Solicitor. Ultimately the state has delegated the making of decisions such as this to the judges of the Court of Protection and it is we who bear responsibility for these decisions.

Over and above the (enormous) significance to GTI himself, the case provides a useful illustration of how judges are striving in a way frankly inconceivable when the MCA came into force to seek to construct decisions around the starting point of P's wishes and feelings.  As Lieven J had done in PW, another case in which the person expressed a clear wish not to die, but was refusing the one treatment that could keep them alive, Williams J did not simply proceed on the basis that the medical evidence gave the answer, but rather sought to recognise (to respect, using the language of the CRPD) both GTI's rights, will and preferences, and that those did not all line up neatly.

The reminder that the buck does stop with the Court of Protection was crisply and neatly put – and of no little importance.  It was not a failure on the part of the medical team that the decision came to be taken by Williams J (although one might ask why it did not come somewhat earlier) but a necessary consequence of the fact that the magnitude of the interference with GTI's Article 8 rights took this out of the scope of those decisions it was appropriate for the clinicians alone to be responsible for.[1]

[1] For ways in which this can be framed in ECHR terms, see this article here.