In Barnsley Hospitals NHS Foundation Trust v MSP  EWCOP 26, 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 is 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 that he lacked capacity, indeed he did not 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 was, 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:
24. When applying the best interests tests at, s.4(6) MCA, the focus must always be on identifying the views and feelings of P, the incapacitated individual. The objective is to reassert P’s autonomy and thus restore his right to take his own decisions in the way that he would have done had he not lost capacity.
25. The weight to be attributed to P’s wishes and feelings will of course differ depending on a variety of matters such as, for example, how clearly the wishes and feelings are expressed, how frequently they are (or were previously) expressed, how consistent P’s views are (or have been), the complexity of the decision and how close to the borderline of capacity the person is (or was when they expressed their relevant views). In this context it is important not to conflate the concept of wishes with feelings. The two are distinct. Sometimes that which a person does not say can, in context, be every bit as articulate as wishes stated explicitly.
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:
41. It is in the context of this framework that I must evaluate what now truly are MSP’s ‘best interests’. The preponderant evidence points strongly to MSP not wishing to live with a stoma or, as he puts it, with any “ongoing medical treatment that will prevent me from living independently, either long term or indefinitely”. Whilst this document is not binding as an Advance Decision, it nonetheless represents a clear and eloquent expression of MSP’s wishes and feelings. Nor, as I have stated above, does it stand alone. It is reinforced by the choate and consistent evidence of MSP’s parents, his step-sister (communicated via the parents) and the clear evidence of three consultants, each of whom was left with no doubt at all that MSP would not want to live either with the stoma or TPN and that the combination of both would be unbearable for him. MSP’s father told me that if his son was permitted to recover consciousness and discover his own plight, he thought he would “kill himself”. This is something his father fears most of all. It was at this point, in his evidence, that this strong and determined father faltered and was momentarily unable to maintain his emotional composure.
Hayden J had, though, to evaluate the relevance of the conservation 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”:
43. The conversation between MSP and Mr M requires to be set in its context, having regard to the evidence holistically. Mr M knew nothing of the ‘Advance Directive’, he agreed that his conversation would have been of a different complexion if he had been aware of this. I emphasise this was nobody’s fault; the document had not been produced. At the time of the conversation, MSP is described as very unwell and septic, he was also receiving a high grade and level of analgesia. I also factor in Mr M’s optimism concerning the potential reversibility of the stoma, the force of which will undoubtedly have been communicated to MSP. I agree with Ms Dolan that in these circumstances MSP’s consent is not necessarily inconsistent with all he has said, nor with the document that has been the focus of scrutiny. What MSP did not want was to find himself in the position he now is. Whether the history of the case justified Mr M’s optimism is logically irrelevant. MSP rejects life with an irreversible stoma and in terms which are unambiguous and consistent. In these circumstances he has made it clear that he rejects all medical treatment or procedures or interventions that artificially sustain his life. Manifestly, this extends to parenteral feeding.
What, then, to do?
44. As Ms Castle [the Official Solicitor] submits, and I accept, the issue in this case is respect for MSP’s autonomy. His expressed wishes and feelings, she analyses, weigh most heavily in the balance, to the extent that they are determinative here. In other words, the presumption of preservation of life is rebutted by the countervailing weight to be afforded to MSP’s autonomy. Ms Dolan has, as her arguments set out above illustrate, concentrated on the consistency and cogency of MSP’s clear views. Logically her arguments lead to the same conclusion advanced by the Official Solicitor. However, Ms Dolan stops short of reaching a conclusion and, though this is her application, on behalf of the Trust, she adopts what she articulates as a position of neutrality. She advances no other course, nor has she suggested that the sanctity of life or the presumption of promoting life has not been displaced. Her careful and skilful arguments, properly analysed, lead only to the conclusion reached by the Official Solicitor.
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:
46. […] Whilst I have highlighted the less than optimal circumstances in which MSP gave his consent to Mr M for the stoma, I do not consider that the evidence rebuts the presumption that MSP was capacitous at the time. If MSP has yielded to an overly optimistic prognosis of reversal which, as we know, proved to be unfounded, he may have means of legal redress. I am not in a position, on the evidence available to me, to know whether or not Mr M should have been more circumspect in his advice. Had he been pessimistic, as to the prospects of a reversal, there is little doubt in my mind that MSP would have rejected the procedure and have chosen to die. This does not mean that this court should correct the error by bringing about the death which MSP would prefer to life with an irreversible stoma. This is, in my judgement, runs contrary to s4 (5) MCA which prohibits an evaluation of “best interests” which is motivated by a desire to bring about death. The intensity of the focus on MSP’s rejection of life with the stoma occludes the fact that he has been equally clear in rejecting anything which artificially prolongs his life. He would unhesitatingly reject the striking artificiality of parenteral feeding. This is clear both from his Advance Directive document and in his mother’s evidence. In the exercise of his personal autonomy he is entitled to take that decision which this court is required to and does respect. Accordingly, and for these reasons, I consider that the plan advanced by Dr W is in MSP’s best interests [i.e. withdrawal of artificial nutrition and hydration with continued sedation which, ultimately, will compromise respiration and lead to MSP’s death]. It is important that I make it entirely clear that Dr W puts forward this plan only in the event that I conclude that it reflects what MSP would have wanted. Having heard all the evidence, which I regard as compelling and cogent, I am satisfied that the plan accords with MSP wishes and feelings.
47. MSP has endured a decade of serious ill health. The quality of his life and his mobility has desperately reduced. His confidence and self-esteem has been adversely impacted. His capacity to forge and maintain interpersonal relationships has been significantly eroded. He has made a practical, utilitarian calculation that life in these circumstances is not what he wants. In a real sense this is not a case about choosing to die, it is about an adult’s capacity to shape and control the end of his life. This is an important facet of personal autonomy which requires to be guarded every bit as jealously for the incapacitous as for the capacitous.
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 mismatch between the consent to the procedure and the purported advance decision; and
- the fact that – as a matter of law – he could not take a decision on behalf of MSP, now, to refuse continued life-saving treatment simply so as to seek to turn back time and undo what would have been MSP’s very likely refusal of treatment at the point of the critical conversation with the surgeon.
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.
Finally, it is perhaps of some importance to understand what this case has to do with advance decisions. Even had it been procedurally compliant by being signed, 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 my (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.