Judge: Hayden J
Citation:  EWCOP 26
In this case, Hayden J considered an application, initially made to him as the Out of Hours judge, for determination of the question of whether a Trust should continue to provide ITU support to a 34 year old man, or withdraw treatment other than palliative care. For more than a decade, the man – identified as MSP – had painful and complex abdominal problems. In October 2019, he underwent surgery where an ileostomy was formed (in other words, his small intestine was diverted through an opening in his abdomen). There was a significant prolapse in February 2020, which it is clear MSP found to be very distressing. At MSP’s request the stoma was reversed on 14 May 2020. The evidence before the court was, as Hayden J recorded, that MSP “utterly loathed life with a stoma.”
On 4 February 2020, MSP drafted a carefully crafted ‘Advance Directive’ (as he called it), which he copied to his parents and to his step-sister. Outside the hospital setting these were the only three people who knew MSP had a stoma. The advance decision to refuse treatment was detailed and comprehensive, and also included (although, technically, as advance statements) making provision for music to be played in the event that he fell into coma and at his funeral (the former reflecting the violent and frightening dreams he had when ventilated on ICU previously in 2013). It included, amongst the treatments that he refused “[t]he formation of a stoma, through an ileostomy, colostomy, urostomy or similar, that is expected to be permanent or with likelihood of reversal of 50% of under”. Unfortunately: (1) the advance decision was not witnessed, as required by the provisions of s.25 MCA 2005; and (2) no-one outside those people identified above were aware of it.
In mid-May 2020, MSP returned to hospital with very significant abdominal pain and sepsis. Mr M, who was the consultant gastroenterological surgeon on duty, responsible for MSP’s care at this admission, impressed upon his patient that his condition was life threatening and that he required a stoma to be formed immediately. Unfortunately, and for reasons which were not entirely clear, the advance decision was not brought to the hospital’s attention until after Mr M had operated. Crucially, at the time of MSP’s admission nobody had any reason to doubt his capacity, indeed he did not lack capacity at that stage. There was no doubt that MSP expressed his consent to the stoma being inserted, although when the application came to court, it was clearly a surprise to the two other doctors who gave evidence, and who had known MSP for some time.
The stoma was formed on 27 May 2020, and, in fact, MSP’s clinical situation was such that it would have to be irreversible. It is not entirely clear what prompted the application to court, but it appears that it may well have been the bringing to the Trust’s attention of the advance decision that MSP had sought to create.
At the point that the application came before Hayden J, MSP was sedated and ventilated in ITU. He was breathing spontaneously with only a small amount of support. In the circumstances, as Hayden J identified (at paragraph 19): “if MSP’s wishes are to be given effect, what requires to be identified is whether it is in his best interests for artificial nutrition and hydration to be withdrawn.”
As Hayden J noted at paragraph 13:
This application revolves around MSP’s own expressed wishes. It requires them to be scrutinised, not only in the context of what he has said and written but by reference to the way he has lived his life, his personality and his beliefs. His parents have been the conduits through which this information has been placed before the Court.
Hayden J set out in considerable detail the evidence from MSP’s family, in particular his mother, which led him to say (at paragraph 17) that:
There is no doubt, in my mind, that he had come to a clear and entirely settled decision that he was not prepared to contemplate life with a stoma or indeed any significant life changing disability. It is not for me, or indeed anybody else, to critique those views or beliefs, but merely to identify them. They are a facet of MSP’s broader personality, the expression of which is integral to his own personal autonomy.
Hayden J then reviewed the legal framework, observing that:
Having outlined the relevant authorities, he agreed (at paragraph 33) with the submission on behalf of the Trust that their import was clear:
the judge must seek to arrive at his objective assessment of whether continuation of life sustaining treatment is in this patient’s best interests. However, those interests must be seen through the prism of the subjective position of the patient.
Hayden J also took the opportunity to reiterate (as he had previously done in NHS Cumbria CCG v Rushton  EWCOP 41) the importance of compliance both with the statutory provisions and the codes of practice when preparing an Advance Decision. As he noted at paragraph 36, “the combination of statute and code intends to strike a balance between the respect for adult autonomy and the risk that a person might find himself locked into and advance refusal which he or she might wish to resile from but can no longer do so.”
Hayden J then held that:
Hayden J had, though, to evaluate the relevance of the conversation between MSP and the surgeon, Mr M, during the course of which he had consented to the formation of the stoma. He agreed with the submission on behalf of the Trust that the “conversation with Mr M and the authorisation by MSP of the stoma was predicated on Mr M’s optimism that the stoma could, potentially, be reversed”:
What, then, to do?
Hayden J emphasised that it was important to break the issues down analytically, in particular to disentangle the question of whether or not the stoma should have been created from the question of whether it was now in MSP’s best interests for ITU treatment to be continued, especially parenteral feeding:
Hayden J, finally, held that the anonymity of MSP should be protected for the remainder of his life and for a period of three months following his death, noting, in particular, the extent to which MSP wanted to conceal his stoma from the world.
Hayden J was, rightly, at pains to emphasise that the case was not about the creation of stomas per se. As he noted (at paragraph 7): “[m]any people require a stoma to be fitted and I have no doubt that the vast majority make the necessary accommodations to ensure that it does not unnecessarily inhibit their enjoyment of life or become an impediment to their personal and sexual relationships.” However, this was simply not the case with MSP.
The case is also of note for the way in which Hayden J had to navigate:
The way in which Hayden J undertook this exercise could properly be described as respecting MSP’s rights, will and preferences: i.e. complying with the provisions of Article 12 of the Convention on the Rights of Persons with Disabilities.
That having been said, one matter that the judgment does not address in terms is the fact that – on the face of it – it does not appear that MSP was clinically in a situation in which it would have been impossible to rouse him so as to be able to ask him what he wanted. It is unlikely that this was not considered by those present, but it is perhaps to be regretted that this was not addressed expressly, not least so that Hayden J could have answered the question of whether the requirement in s.1(3) “all practicable steps” to support the person to take their own decision before having recourse to best interests decision-making has to be judged by reference to what the person themselves would have wished. In other words, would it have been legitimate for the court to consider as part of its consideration of MSP’s decision-making capacity whether MSP would have wished to have been brought out of sedation to be confronted with the true position?
It is, separately, perhaps of some importance to understand what this case has to do with advance decisions. Even had it been procedurally compliant by being witnessed, it would not have been applicable at the point of the discussion with Mr M, as MSP had capacity at that point. It is also not entirely obvious that it would have meant (for instance) that clinically assisted nutrition and hydration would have to have been stopped when the Trust became aware of it, because it is not, on its face, obvious that it covered precisely the circumstances in which MSP now found himself. Rather, the advance decision in this case served as very powerful evidence of MSP’s wishes and feelings as regards the sort of treatment to which the court was now being asked to consent to or refuse on his behalf. The case therefore reinforces the importance that advance decisions – wherever possible – contain statements which enable decision-makers to understand the values and priorities of the person concerned. An example of how to create such an advance decision can be found here. For more on the mechanics of advance decisions, see Alex’s (updated) discussion paper here.
Finally, on a procedural point, Hayden J took the opportunity to note, and (rightly) to credit the Official Solicitor with being able to re-establish an out of hours service – it had been a very troubling state of affairs for several years that in very urgent medical treatment applications brought out of hours, the court was frequently not in a position to be able to look to the Official Solicitor to be able to represent P.