North West London Clinical Commissioning Group v GU
Judge: Hayden J
Citation:  EWCOP 59
In this case Hayden J made a series of very powerful observations about the obligations imposed upon treating bodies to ensure proper consideration of whether continuing treatment is in a person’s best interests, and to take proper steps to secure timely resolution of any dispute. The case concerned a man in a prolonged disorder of consciousness who had been cared for at the Royal Hospital for Neuro-disability (RHND) since 2014. By August 2018, and at the request of the man’s brother, a best interests meeting was held, at which point it was clear his treating clinicians had come to the clear conclusion that there was no prospect of any change in his condition and that continued treatment was both futile and potentially burdensome. There was, however, a dispute between family members in relation to whether treatment should be withdrawn. What did not happen were appropriate steps to resolve that dispute, or to make an application to the Court of Protection, for a very prolonged period. When the application was finally made, Hayden J had little hesitation in concluding – not least on the basis of clear evidence as to GU’s likely wishes and feelings that – that it was not in his best interests to continue to receive CANH. At the hearing at which this decision was reached, the Official Solicitor had contended strongly that there had been “inordinate and inexcusable delay” on the part of RHND, in giving consideration to the issue of whether continued treatment was in GU’s best interests, and in taking steps to enable the Court to determine that issue in the absence of family agreement. This was compounded by further delay on the part of the CCG. Hayden J gave the opportunity to the RNHD to explain the position, and in the judgment now delivered Hayden J made clear in no uncertain terms the extent to which he found the situation problematic.
In formal terms, it is an unusual judgment, because Hayden J did not, in fact, decide anything. He could have undertaken an exercise to enable him to make a declaration under s.15(1)(c) that the actions of the RHND in treating GU had been unlawful. However, he declined to do so on the basis that this was neither necessary nor appropriate (paragraph 40). Rather, he considered it necessary:
to evaluate whether GU’s dignity was properly protected and, if not, why not. The hearing on 15th July 2021, was specifically convened to afford the RHND an opportunity carefully to review their approach to GU’s treatment and to assist this court in understanding what the Official Solicitor rightly, in my judgement, identifies as the ‘inordinate and inexcusable delay’ in determining GU’s best interests.
A striking feature of the judgment was the extensive review of passages from domestic and international cases and legal instruments, “to signal and analyse the emphasis given to human dignity, in order to evaluate its application to this case and more widely to the many challenging decisions that the Court of Protection is required to take.” During the course of this, he set out his clear view that:
- Thus, whilst there is and can be no defining characteristic of human dignity, it is clear that respect for personal autonomy is afforded pre-eminence. Each case will be both situational and person specific. In this respect there is a striking resonance both with the framework of the Mental Capacity Act 2005 and the jurisprudence which underpins it. The forensic approach is ‘subjective’, in the sense that it requires all involved, family members, treating clinicians, the Courts to conduct an intense focus on the individual at the centre of the process. Frequently, it will involve drilling down into the person’s life, considering what he or she may have said or written and a more general evaluation of the code and values by which they have lived their life.
- The case law of the Court of Protection reveals this exercise, in my judgement, to be receptive to a structured, investigative, non-adversarial enquiry which, as here, frequently establishes a secure evidential base, illuminating P’s wishes and feelings. This investigation requires sensitivity, intellectual integrity and compassion on the part of all those involved. The beliefs and/or prejudices of others are entirely extraneous to the question of what P would want in the circumstances which he or she finds themselves in. Sometimes, where P has become isolated and alone the investigation may be inconclusive but experience shows and the case law reveals, that many of us leave a mark on those around us and closest to us which is clearer, stronger and more enduring than perhaps we might anticipate (See: N, Re  EWCOP 76; Sheffield Teaching Hospitals NHS Foundation Trust v TH & Anor  EWCOP 4). The outcome of this investigation will, of course, never achieve the same evidential weight as a strong, clearly expressed wish by a capacitous individual. But, the evidence of the code by which P has lived his life and the views he has expressed (which cast light on the decision to be taken) frequently provide powerful evidence when evaluated against the broad canvas of the other forensic material.
- Although it is not an issue in this instant case, evaluating the codes and values by which an individual has lived his life will, in many cases, involve taking account of both religious and cultural beliefs. This is not to be equated with a superficial assumption that because a person is a member of an identified faith, he will inevitably have wanted a particular medical decision to be taken. It must be recognised that within any faith or culture there will exist a diversity of interpretation and practices, some of which will be extra-doctrinal and not easily reconcilable with the theological strictures of the faith. Thus, for example, some Roman Catholics whilst having a clear religious identity may nonetheless choose to practice birth control; some Jews may not adhere to prescribed dietary requirements; some Muslims may not observe Ramadan. Even those who do not regard themselves as having a faith may have grown up in countries or families where faith-based beliefs have migrated into more general cultural values. All this is in sharp focus when considering what is often referred to as the ‘sanctity of life’, a phrase which is rooted in religious lexicon, though it has developed a broader meaning in the law (e.g. sanctity of contract). When considering what P would want, it is his own religious views and practices that need to be focused upon and not the received doctrine of the faith to which he subscribes. The latter approach risks unintentionally subverting rather than promoting the autonomy that is integral to human dignity.
Further, and in a helpful reminder of contextual factors, Hayden J observed that:
- When considering the likely wishes of an incapacitated adult, the religious codes and community values within which he or she has lived will be an important facet of the subjective evaluation of best interests. These are however, for the reasons considered at para 59 [this may be a typographical error for 66] above, essentially extraneous and contextual factors which can never be permitted to occlude the far more rigorous exercise of identifying what P most likely believed and what he or she would have wanted in circumstances where medical treatment had become burdensome and futile.
Bringing his attention to bear upon the obligations imposed upon treating organisations, Hayden J emphasised that:
- […] The judgment in the Supreme Court in re: Y […] and the available guidance make it pellucidly clear that the person responsible for making decisions in this sphere, where P lacks capacity, is the individual with overall responsibility for the patient’s care, as part of their clinical responsibility to ensure that treatment provided is in the patient’s best interests. This will usually be a consultant or general practitioner. This is reflected, almost verbatim within the Royal College’s guidance [i.e. the RCP guidelines on prolonged disorders of consciousness] and it does not permit of any ambiguity.
In relation to the RHND itself, Hayden J observed that:
- After what I strongly suspect were years of real distress and concern, the pressure to convene a best interests meeting was, ultimately, generated by E (GU’s brother). Even a moment’s reflection will reveal that this puts a family member in a highly invidious position. The RHND’s failure to act led to a situation in which E had to press for the discontinuance of treatment in order that his own brother (GU) might be permitted to die with dignity. Many in E’s situation might have found themselves unable or unwilling to take this course. They should not have to do so.
- The [RCP] guidance emphasises that the central point to keep in mind is that the decision-making process is about the best interests of the individual patient not what is best for those who are close to, or around them. I was told by the CEO of RHND that the discontinuance of life sustaining treatment in the kind of circumstances arising here causes distress to staff, other patients and their families. It was clearly intended to signal that this was, in some way, a reason to delay the best interests decision-making process. I have no doubt that these cases cause deep distress to others in the hospital. Indeed, it would be concerning if they did not. I have equally no doubt that these considerations have no place at all in evaluating GU’s best interests. Factoring these matters into the decision process is both poor practice and ethically misconceived.
Hayden J was not attracted to the proposition that the guidance might need to be updated, tartly observing that he was not persuaded that there was a need for any further guidance:
- I am not persuaded that there is a need for further guidance, beyond that which is folded into the analysis of this judgment. Indeed, I have come to the conclusion that the existing guidance must be restated and emphatically so. This Court’s guidance [Serious Medical Treatment  EWCOP 2] was released as recently as 17thJanuary 2020 and is condensed into five pages. It is intended to be an easily accessible document. I am aware that it is widely consulted. It is, I hope, a convenient gateway to the wider case law and to the other available professional guidance.
- What does require to be spelt out, though it ought to be regarded as obvious, is that where the treating hospital is, for whatever reason, unable to bring an application to the court itself, it should recognise a clear and compelling duty to take timely and effective measures to bring the issue to the attention of the NHS commissioning body with overall responsibility for the patient.
Finally, he observed that:
- […] The Royal College has issued guidelines, they are to be treated as such and not regarded as set in stone. Consideration of a patient’s best interests arises in response to clinically identified need. The need for an assessment is driven by what the patient requires and not confined to the structure of annual review [as recommended as the minimum in the RCP Guidance]. In simple terms, it requires to be kept in constant and unswerving focus. (see e.g.; Cambridge University Hospitals NHS Foundation Trust v AH & Ors (Serious Medical Treatment)  EWCOP 51). Regular, sensitive consideration of P’s ongoing needs, across the spectrum, is required and a recognition that treatment which may have enhanced the patient’s quality of life or provided some relief from pain may gradually or indeed quite suddenly reach a pivoting point where it becomes futile, burdensome and inconsistent with human dignity. The obligation is to be vigilant to such an alteration in the balance.
It is likely that advocates and others will regularly have recourse to Hayden J’s review of the approach to dignity in the case-law. For Alex’s part, and having fought ‘dignity wars’ in different contexts, he does still require some persuasion that it is necessarily the answer to really difficult questions. He would, however, entirely agree that the way in which the dignity of the individual in question is spoken about will be very revealing of the person doing the talking.
The judgment also stands as a clear restatement of both the procedural and substantive requirements in relation to decision-making. For my part, the four critical points to draw out are that:
- Proper best interests decision-making is a matter of good governance, requiring identification of who is responsible for coordinating the process and (if different) who is responsible for implementing any decision that is taken;
- Best interests decision-making is an ongoing process, requiring review both on a regular basis and whenever a material factor emerges which might change the calculus;
- Even if implementing a decision may challenge the conscience of those involved, they are still obliged to undertake the process of consideration of what course of action is in the best interests of the person (see also in this regard this case).
- Where there is no consensus, action has to be taken by the public body responsible to obtain a timely resolution from the Court of Protection.
It is understandable, at one level, why Hayden J did not wish to engage in an analysis of whether the actions of the RHND were unlawful. Had he done so, a number of very difficult questions would have arisen. If and when they arise again, it may be that assistance can be gained from a German Federal Court of Justice decision in 2019 in a very similar situation.
 Professor David Feldman’s articles: “Human dignity as a legal value – Parts I and II”  Public Law 682-702 and  Public Law 61-71 make a good introduction to the – very extensive – academic literature about the concept.
 Similarly, ‘autonomy’ is also a term which can sometimes obscure more than it reveals. Some may find this podcast discussion between Dr Camillia Kong, Jane Richards and I of interest here.