Judge: Hayden J
Citation:  EWCOP 76
[Editorial Note: the judge, Hayden J, expressly debated with himself whether it was necessary to review the progress of Mrs N’s condition, his instinct being to give priority to her privacy and the protection of her dignity. He ultimately decided that he had to set out some of the key features of the progression of the disorder and Mrs N’s responses as part of the broad canvas of evidence which informed his ultimate decision. Whilst he needed to do so – he considered – so as to make clear that his reasoning was both transparent and uncompromised – the editors are not so bound and we therefore do not give those details in this judgment, which received wide publicity at the time. We also mindful of the – characteristically thoughtful – observations of Lucy Series as to the level of detail given in the judgments in both this case and the C case also covered in this newsletter].
This case is the first one in which the court has expressly sanctioned the withdrawal of Clinically Assisted Nutrition and Hydration (‘CANH’) from a person who is in – or was treated by the court as being – in a Minimally Conscious State. It was brought by a woman, M, in respect of her mother, Mrs N, who profoundly impaired both physically and cognitively in consequence of the progressive degenerative impact of Multiple Sclerosis.
Hayden J undertook a careful and comprehensive of the law starting – rightly – with the principles in ss. 1 and 4 MCA 2005. He endorsed the ‘admirably succinct’ submissions of the Official Solicitor recorded at paragraph 27, namely that:
“(a) The court is the decision maker and thus has to make the decision by:
(b) There are no limits placed on the nature or type of circumstances which may be relevant to the decision. It all depends on the facts of the case. However, in order to take a decision properly which considers all relevant circumstances, the decision maker must undertake a proper inquiry into both:
(c) Baroness Hale explains in Aintree at §24 that the Act does not propose a totally objective best interests decision making process but a compromise which is under the label of “best interests” but nonetheless is a compromise which contains a “strong element of substituted judgment”. This compromise ensures that P as a human being remains at the very centre of decision-making concerning [them];
(d) The compromise is achieved by requiring the decision maker to ‘consider’ (i.e. take fully into account) both P’s past and present wishes and feelings: see section 4(6)(a). Whilst particular attention must be paid to expressions of P’s wishes and feelings that were written down by P at a time when P had capacity, the decision maker must inquire into and then consider all other evidence of wishes and feelings before taking the decision: see §5.18 to 5.20 of the Code of Practice. That other evidence can include evidence from relatives about P’s wishes and feelings which may assist the decision maker to understand P;
(e) Separately to considering P’s wishes and feelings, the decision maker must also consider ‘the beliefs and values that would be likely to influence his decision if he had capacity’. This means that the decision maker must inquire into P’s beliefs and values. This is not limited to religious beliefs but beliefs and values about what matters were important to P, how they affected P’s view of the world and the factors which P thought were important in taking decisions for himself or herself. This part of the statutory process asks the decision maker to inquire into and reach views about the general approach that P had to making decisions for himself or herself and to ask what factors were important to P in P’s own capacitous decision making as a prelude for asking what decision P would have made for himself or herself if P still had capacity;
(f) The court also needs to look beyond P’s ‘beliefs and values’ by considering any other factors that would, assuming P retained capacity, be have been likely to have influenced P in making the relevant decision: see section 4(6)(c).”
Hayden J further highlighted the observations of Baroness Hale in Aintree at paragraph 39, namely that:
“39. The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.”
and Re S (Protected Persons)  1 WLR 1082, in HHJ Hazel Marshall QC had held:
“55 In my judgment it is the inescapable conclusion from the stress laid on these matters in the 2005 Act that the views and wishes of P in regard to decisions made on his behalf are to carry great weight. What, after all, is the point of taking great trouble to ascertain or deduce P’s views, and to encourage P to be involved in the decision-making process, unless the objective is to try to achieve the outcome which P wants or prefers, even if he does not have the capacity to achieve it for himself?
Hayden J noted that he had given these passages very considerable thought, but that:
“28. […] I draw from them only this: where the wishes, views and feelings of P can be ascertained with reasonable confidence, they are always to be afforded great respect. That said, they will rarely, if ever, be determinative of P’s ‘best interest’s’. Respecting individual autonomy does not always require P’s wishes to be afforded predominant weight. Sometimes it will be right to do so, sometimes it will not. The factors that fall to be considered in this intensely complex process are infinitely variable e.g. the nature of the contemplated treatment, how intrusive such treatment might be and crucially what the outcome of that treatment maybe for the individual patient. Into that complex matrix the appropriate weight to be given to P’s wishes will vary. What must be stressed is the obligation imposed by statute to inquire into these matters and for the decision maker fully to consider them. Finally, I would observe that an assessment of P’s wishes, views and attitudes are not to be confined within the narrow parameters of what P may have said. Strong feelings are often expressed non-verbally, sometimes in contradistinction to what is actually said. Evaluating the wider canvass may involve deriving an understanding of P’s views from what he may have done in the past in circumstances which may cast light on the strength of his views on the contemplated treatment. Mr Patel, counsel acting on behalf of M, has pointed to recent case law which he submits, and I agree, has emphasised the importance of giving proper weight to P’s wishes, feelings, beliefs and values see Wye Valley NHS Trust v B  EWCOP 60; Sheffield Teaching Hospital Foundation Trust v TH and TR  EWCOP 4; United Lincolnshire Hospitals NHS Trust v N  EWCOP 16.”
Having cited paragraph 5.31 of the Code of Practice (addressing when it is proper for steps not to be taken to prolong life, Hayden J noted that:
“30. It is clear, therefore, that the framework of the Act and the scheme of the Code of Practice place great emphasis on the importance of personal autonomy and the obligation to be alert to direct or indirect discrimination against those who lack capacity. Decisions taken in the ‘best interests’ of an incapacitous individual must factor in the recognition that respect for an individual’s past and present (where relevant) wishes and identifiable codes and beliefs by which he has lived are a crucial part of promoting best interests. To subvert these to a substitution of an objective evaluation i.e. to superimpose what the Court thinks best, may result in indirect discrimination. The central objective is to avoid a paternalistic approach and to ensure that the incapacitous achieve equality with the capacitous.” (emphasis added)
From the legislative structure relating to Advance Decisions to Refuse Treatment (contained in ss.24-26 MCA 2005) Hayden J noted that: “[p]erhaps the most significant impact of these provisions is that they illustrate that the presumption of life, predicated on what is often referred to as the ‘sanctity of life’ or the ‘intrinsic value of life’, can be rebutted (pursuant to statute) on the basis of a competent adult’s cogently expressed wish. It follows, to my mind, by parity of analysis, that the importance of the wishes and feelings of an incapacitated adult, communicated to the court via family or friends but with similar cogency and authenticity, are to be afforded no less significance than those of the capacitous” (paragraph 32, emphasis added).
Hayden J analysed in detail both the competing medical evidence as to whether Mrs N was in an MCS or a Vegetative State, noting that there was agreement between the doctors as to the clinical findings and disagreement as to the correct nomenclature to be applied. Which category she was in had important consequences legally, but was (he found) an arid debate clinically given that all ultimately agreed on the medical facts.
Hayden J noted that it was well-established that, if Mrs N was in an MCS, then any evaluation of her best interests must involve a proper identification of the advantages and disadvantages of each proposed course: i.e. the ‘balance sheet,’ noting – importantly – that “the balancing exercise is qualitative rather than quantitative.” He usefully reminded practitioners of the observation of McFarlane LJ in Re F (A Child) (International Relocation Cases)  EWCA Civ 882 that, whilst some form of balance sheet may be of assistance to judges in seeking to assess competing welfare issues [in that case relating to a child]:
“52. […] its use should be no more than an aide memoire of the key factors and how they match up against each other. If a balance sheet is used it should be a route to judgment and not a substitution for the judgment itself. A key step in any welfare evaluation is the attribution of weight, or lack of it, to each of the relevant considerations; one danger that may arise from setting out all the relevant factors in tabular format, is that the attribution of weight may be lost, with all elements of the table having equal value as in a map without contours.”
By contract, and citing A Hospital v SW  Med LR 273, Hayden J noted that, if she was in a VS, the balance sheet itself did not apply, the very diagnosis establishing the futility of further intervention.
Hayden J set out in detail and with care the evidence that he had heard as to the views and attitudes of Mrs N, noting that it left him with little doubt that:
“60 […] Mrs. N would have been appalled to contemplate the early pain, increasing dependency and remorseless degeneration that has now characterised her life for so long. I have no difficulty in accepting the family’s view that she would not wish to continue as she is. More than that, she would have wished to have discontinued her treatment some considerable time ago.
Hayden J noted that the Official Solicitor had, until the conclusion of the family’s evidence, taken the view that the strong presumption in favour of the benefit of the continuance of life had not been displaced, but that, following careful consideration, the Official Solicitor had concluded that it would be wrong for him to continue to oppose the application. Whilst he did not criticise the Official Solicitor for so doing, he noted:
“64. […] the Court was then left in the position of contemplating a serious and important development in the evolution of the case law in the absence of opposing arguments. I was instinctively uncomfortable with that situation. Accordingly, as is by now clear from this judgment, I required each of the experts to give evidence as well as those conducting the SMART assessment. Mr Lock, notwithstanding the change of position, continued to act, in effect, as amicus to the Court, testing the evidence as it evolved.
Hayden J emphasised the case was not concerned with the right to die, as no such right existed. Rather:
“70. […] What is in focus here is Mrs. N’s right to live her life at the end of her days in the way that she would have wished. I am required to evaluate the ‘inviolability of life’ as an ethical concept and to weigh that against an individual’s right to self determination or personal autonomy. Not only do these principles conflict, they are of a fundamentally different complexion. The former is an ideological imperative found in most civilised societies and in all major religions, the latter requires an intense scrutiny of an individual’s circumstances, views and attitudes. The exercise is almost a balance of opposites: the philosophical as against the personal. For this reason, as I have already indicated, I consider that a formulaic ‘balance sheet’ approach to Mrs. N’s best interests is artificial.
It is difficult to know whether to be pleased or be concerned that it is now only in the 10th year of the MCA’s life that we are having such a spate of decisions that so squarely seek to place the individual at the heart of the process, whether that be as regards the assessment of capacity (the C case also reported in this issue) or in the determination of best interests. Let us take the former course, and celebrate the fact that the courts are now determined to make such efforts to identify and (even if being careful not to say that they are being governed by) to respect the wishes of the individuals concerned where they can be identified.
As with the Wye Valley case, this is a model of best interests decision-making. That it may have represented an extension of the court’s jurisdiction into new areas is – frankly – neither here nor there because it did soon the basis of so careful an analysis and application of the core principles of the Act.
One final procedural point should be noted. N’s case was different to those previously considered by the courts in another way: her prolonged disorder of consciousness was caused not by a sudden onset acquired brain injury, but as a result of a degenerative disease. The RCP Guidelines on Prolonged Disorder of Consciousness is very firmly focused upon those who have sustained a sudden onset profound acquired brain injury. However, none of the experts who gave evidence before Hayden J (all of whom had been involved in drafting the Guidelines) suggested that they were not relevant to the diagnostic issues before the court. Nor was there anything in Hayden J’s judgment to suggest that M’s application was anything other than appropriate or necessary – i.e. he did not dissent in any way from the clear statement made by Baker J (endorsed by the President) in W v M that applications to withhold or withdraw ANH from a person in VS or MCS must be referred to the court. Treating Trusts and CCGs must therefore consider carefully whether they are required to bring applications for withdrawal of CANH from those in MCS (and indeed PVS) however caused. That having been said, the editors hope that in due course the attention of the courts will be drawn firmly back to the observations of the Court of Appeal in Burke v GMC  EWCA Civ 1003 as to the extent to which applications to court are required by law as opposed to being good practice where the legality of the proposed course of action is in doubt (see paragraphs 70-80).
 Strictly, it should be noted that the court in United Lincolnshire Hospital NHS Trust v N  EWCOP 16, in which a woman in an MCS continually sought to pull a PEG tube out, Pauffley J declared that it was lawful and in her best interests for the clinicians (a) not to make any further attempt to secure a means of providing artificial nutrition; (b) to withdraw the provision of intravenous fluids and dextrose; and (c) to provide such palliative care and related treatment (including pain relief) as considered appropriate to ensure she suffers the least distress and retains the greatest dignity until such time as her life comes to an end. The case seems to have been treated subsequently as a ‘withholding’ rather than a ‘withdrawal’ case but in particular in light of declaration (b) was a combination of both. It is perhaps more accurate to say that this case represented the first case in which withdrawal was considered in a case where, absent such withdrawal, it would be expected that the individual would continue to live for an appreciable period of time.