Alex RKThis is a post co-written by Tor Butler-Cole KC and I, prompted by the decision in GUP v EUP and UCLH NHS Foundation Trust [2024] EWCOP 3, a case in which Hayden J was concerned with a situation of a woman in her late 80s who had sustained a serious stroke and was being cared for in hospital. In the period following November 2023, Hayden J identified that there had been:
6. […] increasing divergence between the growing hope of the family for some meaningful recovery and the view of the clinicians that comfort and dignity ought to be the focus of EUP’s care, at what they assess to be the end of her life. Whilst these two perspectives of EUP’s medical needs have diverged, I am concerned that the treatment she has received reflects a convergence between the two. In other words, the treatment plan has an air of compromise about it, a negotiation between the family and the medical team. There may, sometimes, be a place for that, but not if the person at the centre of it becomes marginalised. P (the protected party) must always be afforded care, which is identifiably in her own best interests. The family’s views are relevant only insofar as they provide a conduit for P’s own wishes and feelings. Families, however loving and well-meaning gain no dominion over their dying and incapacitous relatives. The family’s role, which is crucial, is to promote and not subvert P’s autonomy.
From mid-November 2023, it had become impossible to provide her with nutrition, but the Trust had continued to provide her with hydration, which appeared to be a compromise reflecting the position above; a matter which troubled Hayden J considerably.
With the benefit of two external second opinions, the Trust reached the view that it was clinically inappropriate to continue to provide artificial nutrition. As Hayden J identified (at paragraph 48), GUP (EUP’s son), and his family:
were never fully on board with that plan. It is certainly the case that there was a broadly co-operative relationship with GUP but I think it was equally clear that he had not accepted the medical consensus. The same applies to his sister, HUP [w]ho has expressed strenuous resistance to the hospital’s plans at this hearing. GUP has told me that the hospital had indicated to him that they were to make an application to court to seek endorsement of their approach. I do not think this is in dispute. However, on 16th January 2024, the Trust confirmed to the family that they had been advised by their lawyers that it was not necessary for them to issue an application. The likely reasoning behind this is that the Trust considered that there was no ethical route to provide nutrition to EUP. The family disagreed and saw this as passivity, with profound consequences. They perceived an important decision having been taken, even though the decision was to take no action. They considered that the Court ought to be able to review that decision making process and identify its own evaluation of where EUP’s best interests lay. I agree with the family. A decision not to provide nutrition is every bit as serious as a decision to withdraw nutrition. Where there is conflict, these cases must be resolved by the court.
In his concluding remarks, Hayden J referred to the Serious Medical Treatment guidance he had issued in January 2020 thus:
50. Ms Dolan submits that the practice guidance, which I issued in January 2020, then as Vice President of the Court of Protection, indicates that the Trust, in circumstances such as these, should bring the case to court promptly. Whilst that document is expressly stated to be by way of guidance only, it is rarely departed from in cases of this gravity. Had the Trust followed it, and at an earlier stage, it would have greatly alleviated the stress to the family. Ms Dolan goes further in her written submissions but I do not. Neither can I imagine that the lawyers advising this Trust were unfamiliar with the guidance. It has been widely promulgated, see also [2020] EWCOP 2. Where there is conflict in these serious medical treatment cases, it is in everybody’s best interests, but most importantly P’s, to bring an application to court. That will be most efficiently achieved where it is driven by the Trust’s application. There are many and obvious reasons why it is also to the Trust’s advantage to have their treatment plans, in cases such as this, scrutinised by the court.
Comment
We note and share, Hayden J’s concern about the situation where, for the sake of compromise, the Trust found itself providing treatment for which there was no clinical rationale. From our experiences both of cases, and of sitting on clinical ethics committees, such situations are not uncommon, both in relation to incapacitated adults, and in relation to neonates. His observations are, or should be, a helpful reminder that the focus must always be kept on the interests of the patient, not (as understandable as this can be) on the interests of others.
We have significantly greater reservations about the observations about the bringing of the application.
We fully appreciate that it is not always necessarily easy to distinguish between a dispute about clinical appropriateness (including, as a subset, futility) and a dispute about whether a treatment that is in principle appropriate is nonetheless not in the best interests of the person. But we suggest that a situation where – as here – the Trust had obtained independent second opinions from two doctors is a one where that dividing line has been properly tested. This, in turn, is likely to mean that the Trust is on much stronger ground in concluding that it does not need to go to court to get, in effect, no more than confirmation that treatment is not clinically appropriate.
That having been said, there will be situations (probably easier to identify on the ground rather than in the abstract) where the ‘temperature’ has become sufficiently high that the Trust considers that obtaining contemporaneous confirmation that is acting lawfully would be prudent, rather than defending the actions of clinicians after the event, for instance in an inquest. In such a situation, we remain very doubtful that the Court of Protection is the correct forum for seeking a declaration of lawfulness in respect of a determination that a course of treatment is not clinically appropriate – rather, we suggest that the correct forum is the King’s Bench Division under Part 8 of the CPR, not least so as to avoid the slide into best interests language / analysis that (on one view) took place in Re EUP. We also have squarely in mind the Court of Appeal decision in AVS v A NHS Foundation Trust & Anor [2011] EWCA Civ 7, which made clear that disputes about best interests where the treatment option is not on the table should not be entertained by the Court of Protection – in strong terms:
38. […] A declaration of the kind sought [i.e. that treatment was in the person’s best interests] will not force the respondent hospital to provide treatment against their clinicians’ clinical judgment. To use a declaration of the court to twist the arm of some other clinician, as yet unidentified, to carry out these procedures or to put pressure upon the Secretary of State to provide a hospital where these procedures may be undertaken is an abuse of the process of the court and should not be tolerated.
39. Like the President, I have also reached the conclusion that the continuation of this litigation by permitting a lengthy hearing to be urgently arranged for numerous busy medical practitioners to be cross-examined truly would be “doomed to failure”. If there are clinicians out there prepared to treat the patient then the patient will be discharged into their care and there would be no need for court intervention. If there is no-one available to undertake the necessary operation the question of whether or not it would be in the patient’s best interests for that to happen is wholly academic and the process should be called to a halt here and now.
We have very considerable sympathy with the proposition that it should be the treating medical body which has responsibility for bringing applications where there is in fact a best interests decision to be made, and the situation falls within that covered by the Practice Guidance, not least because it undoubtedly likely to be more efficient (as Hayden J identified) in most cases. And we would also be the first to say that it is very unfortunate that the (welcome) expansion of non-means-tested legal aid to parents in serious medical treatment cases involving children was not expanded to those potentially involved in such cases in respect of incapacitated adults.
However, we suggest that it is important to recognise the limits of the points set out above.
In a blog on the Serjeant’s Inn Medical Law blog about the EUP case, it is suggested that:
In such cases the Art 2 ECHR rights of the individual to whom life sustaining treatment is not being given arguably demand that the Trust, as a ‘public authority’ within the meaning of s.6 HRA 1998, give effect to the protections inherent in Art 2, as part of the general obligation on the State to protect the right to life at law.
Even where the position of the doctors is that the treatment is unconscionable and they will not provide it (and following Burke and N v A CCG cannot be required to do so by any CoP judge) a responsible public body should surely actively seek out a judicial endorsement of the ceiling of care they are imposing. Indeed that was precisely the application initially made in the seminal case of Aintree v James [2013] UKSC 67 where at first instance when the Trust sought declarations regarding some proposed ceilings on Mr James’s care the judge declined to make them. There was no suggestion on the facts of that case that the application of the Trust was improperly brought. As Mr Justice Peter Jackson (as he then was) said in that case: “It must always be recognised that a declaration is not a treatment order, but the endorsement of a plan created by others.”
The blog then goes on to cite the Practice Guidance as supporting the need for an application.
With respect, we think that it is going too far to suggest that Article 2 ECHR requires an application to court in every situation where a medical body is contemplating withholding or withdrawing treatment or has decided to do so. If this was the case, then every decision by a clinical body to withhold a life-saving cancer drug on the basis that the person does not fit the strict cost / benefit criteria would need to be taken by that body to court if the person (or someone on their behalf) does not agree. Or, to focus squarely in on clinical appropriateness, what about a decision not to provide clinically assisted nutrition and hydration in late stage dementia, in circumstances where NICE guidance NG97 specifically states “[d]o not routinely use enteral feeding in people living with severe dementia, unless indicated for a potentially reversible comorbidity?”[1] We suggest that a difference of opinion with family / others close to the person about the provision of CANH in such a situation cannot itself give rise to an obligation on the part of the treating body to take the case to court. And finally, to outline a situation which in practice combines both resource allocation and consideration of clinical appropriateness, admission to intensive care. Again, we suggest that it is (at best) doubtful that a Trust is under an obligation to bring to court cases where there is a disagreement about whether a person is admitted but the clinicians conscientiously consider admission could serve no clinical purpose.
With due diffidence, given that Hayden J was making observations about Practice Guidance he himself issued, we note that the Practice Guidance does not, in fact, address the situation that was in play in EUP‘s case, at least on the facts as they appear in the judgment. The Practice Guidance[2] was specifically concerned with situations where there is a dispute about the best interests of the person. This is clear from paragraph 6, which explains how, normally, s.5 MCA 2005 will provide the basis upon which treatment is provided / stopped / withheld. Section 5 expressly applies where the person carrying out the act reasonably believes that they are acting in the best interests of the individual lacking the relevant decision-making capacity. Paragraph 7 of the Practice Guidance then goes on to identify that paragraphs 8-13 “set out the circumstances in which section 5 either will not or may not provide a defence. If section 5 does not provide a defence, then an application to the Court of Protection will be required.” Paragraphs 8 and 9, relied upon in the Serjeant’s Inn blog, are therefore concerned with disputes about capacity or best interests, not about clinical appropriateness. If treating clinicians are not willing to offer a particular treatment on the grounds of clinical appropriateness, that does not become a best interests decision just by virtue of the fact that the patient lacks capacity to make their own medical treatment decisions.
And finally, being pedantic, Aintree v James was a case where the treating Trust brought the application to determine what was in Mr James’ best interests: in other words (and whether rightly or wrongly) the Trust brought the application on the basis that it was in principle open to the court to find that their treating clinicians were wrong about where his best interests lay. We say ‘rightly or wrongly,’ because it is difficult to escape the impression that, in reality, what the Trust wanted to say was that treatment escalation in Mr James’ case was inappropriate.[3] However, it is hardly surprising that, the case having been brought on a best interests basis, the Court of Protection was willing to entertain it. In other reported cases, we note the court itself has expressed disquiet about being asked to make a purported ‘best interests’ determination when the option of continued treatment is one that no clinician is putting forward – see for example An NHS Trust v L & Ors [2012] EWHC 4313 (Fam) in which Moylan J noted “Does the evidence establish that there are treatment options? If it does not, I question whether the Court is entitled to assume that there are.”
When to bring an application to court (and who should bring it) will be likely to remain an issue that is regularly revisited. But we do suggest that it is very important that an urban myth is not allowed to develop (in the same way that it did about CANH withdrawal cases following Bland, not dispelled until 2018 in NHS Trust v Y) about what the law actually requires. To the extent that the decision in EUP’s case has muddied the waters, we hope that it is possible for this to be resolved judicially as soon as possible.
[1] Recommendation 1.10.8. Their decision aid on enteral feeding in advanced dementia explains that “Studies have looked at the possible benefits from tube feeding for people living with severe dementia. These studies found no good evidence that people who had tube feeding lived any longer than people who did not. There was also no good evidence that tube feeding made any difference to people’s weight or improved how well-nourished they were.”
[2] Which as Hayden J reminded himself is not a source of law.
[3] The confusion in this case, and the gaps that opened up in consequence between the courts and clinicians, were discussed in a article we co-wrote with Vikram Sachdeva as long ago as 2014 in the late-lamented Elder Law Journal: The MCA in the Supreme Court: Reflections on Aintree v James (available on request).
