In Re Sudiksha Thirulamesh (dec’d) [2024] EWCA Civ 896 the Court of Appeal has made very clear how to approach the situation in which a person appears not to believe their doctor. I can do no better by way of summary than reproduce the opening paragraphs of the judgment of King LJ (giving the sole reasoned judgment, with which Singh and Baker LLJ agreed):
1. Sudiksha Hemachandran (“Sudiksha”) died on 12 September 2023. She was 19 years old. She was born with a rare mitochondrial disorder known as Mitochondrial Depletion Syndrome RRM2B (“RRM2B”), a chronic degenerative disease with no known cure.
2. On 20 July 2023, the University Hospitals Birmingham NHS Foundation Trust (“the Trust”) made an emergency application to the Court of Protection asking the court to approve a palliative care plan for Sudiksha and for her life sustaining treatment to be withdrawn.
3. The issue which came before the late Roberts J (“the judge”), namely Sudiksha’s capacity to make decisions in relation to her medical treatment, was both unusual and difficult and is central to this appeal. Whilst the medical evidence was overwhelming that Sudiksha was in multi-organ failure and nearing the end of her life, she was fully conscious and able to communicate through a voice box. She was adamant that she wished to have the opportunity to be considered for experimental nucleoside treatment in America or Canada. She wanted to “die trying to live”.
4. On 7 August 2023, the judge made a declaration that Sudiksha lacked capacity “to give or withhold her agreement to medical treatment including palliative treatment”.
5. The court having decided that Sudiksha lacked capacity to make decisions about her medical care, the case was listed to be heard on 23 October 2023 with a time estimate of two days in order for the court to “determine [Sudiksha’s] best interests in terms of medical treatment”.
6. In the event, no best interests decision was ever made by a court as Sudiksha died only 35 days later. Her end of life care was provided under the terms of a treatment plan (“the treatment plan”) without any judicial intervention. The plan had been agreed with Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh (“the parents”) some months previously in May 2023.
7. On 5 October 2023, Sudiksha’s parents (who had been the 2nd and 3rd Respondents in the capacity proceedings) issued an Appellant’s Notice seeking permission to appeal against the declaration of incapacity. Notwithstanding that Sudiksha’s death meant that the appeal was academic, I granted permission to appeal and in due course, also permission for MIND to intervene.
8. Mr Bruno Quintavalle represented the parents, Katie Gollop KC and Olivia Kirkbride represented the Official Solicitor, Vikram Sachdeva KC, Catherine Dobson, and Isabella Buono represented the Trust and Alex Ruck Keene KC and Neil Allen represented MIND.
9. Having heard extensive submissions from the parties and from MIND, I would allow the appeal. It follows that the declaration made by the judge on 7 August 2023 that Sudiksha lacked the capacity to give or withhold her agreement to medical treatment, including palliative treatment, will therefore be set aside. That being the case, the presumption of capacity contained in section 1(2) Mental Capacity Act 2005 (“MCA”) means that Sudiksha is presumed to have had the capacity to give or withhold her agreement to medical treatment, including palliative treatment, at all times leading up to her death.
10. In reaching that decision, I should be clear that I make no criticism of the judge who demonstrated the same care and compassion in this case as she did in every case she heard during her time as a High Court Judge before her untimely death. The decision she reached was in part at least, influenced by an established legal approach to the relevance of a patient’s belief in their illness and prognosis. That approach is, for the reasons set out in this judgment, wrong and contrary to Court of Appeal authority.
Breaking matters down more, however, at first instance, Roberts J had found that Sudiksha was:
93. […] unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors. Absent that belief, she cannot use or weigh that information as part of the process of making the decision. This is a very different position from the act of making an unwise, but otherwise capacitous, decision. An unwise decision involves the juxtaposition of both an objective overview of the wisdom of a decision to act one way or another and the subjective reasons informing that person’s decision to elect to take a particular course. However unwise, the decision must nevertheless involve that essential understanding of the information and the use, weighing and balancing of the information in order to reach a decision. In [Sudiksha’s] case, an essential element of the process of decision-making is missing because she is unable to use or weigh information which has been shown to be both reliable and true.”
Further, Roberts J had held:
98. As to the nature of the impairment of, or disturbance in the functioning of, the mind or brain which prevents [Sudiksha] from understanding, using and weighing the information which she has been given, it is accepted that [Sudiksha] does not suffer from any recognised psychiatric or psychological illness. Dr Mynors-Wallis struggled to identify precisely how to ‘label’ [Sudiksha] condition. His evidence was that her beliefs, which he accepted to be false, did not amount to a delusion because there was an understandable basis for her views which derived from, or coincided with, the views held by those she loved and trusted. His concern about making the causal nexus between a lack of ability to make a decision and the impairment in question was that none of the treating clinicians had identified a physical problem in her brain or that her recent respiratory arrests had affected her the functioning of her brain. That much is agreed.
On the appeal, and identified by King LJ, the central question for the Court of Appeal, was as to the relevance of Sudiksha’s belief in her illness and prognosis. The Trust’s position in writing was that:
“where there was an objectively verifiable medical consensus as to the consequences of having, or not having, treatment, a person must believe, or accept as true, the information which informs the matter in order to understand it for the purposes of section 3(1) MCA”. Mr Sachdeva argued that the requirement of belief was not an attempt to add a gloss to the statute, but rather that it followed from the ordinary reading of the requirement of section 3(1) MCA that a person must understand information relevant to a decision about medical treatment. Relevant information, he submitted, includes information as to the consequences of having or not having medical treatment. If a person does not believe relevant information that is objectively true, then the person will proceed on the basis of incorrect information and will, under section 3(1)(a) be unable to make a decision for him or herself.
The Trust’s position relied on the observations made by Munby J (as he then was) in Local Authority X v MM [2007] EWHC 2003 (Fam); [2009] 1 FLR 443 (“Re MM”) to the effect that:
81. [….] If one does not “believe” a particular piece of information then one does not, in truth, “comprehend” or “understand” it, nor can it be said that one is able to “use” or “weigh” it. In other words, the specific requirement of belief is subsumed in the more general requirements of understanding and of ability to use and weigh information.”
That observation (pre-dating the MCA 2005) had led the courts to proceed on the basis that “in order to ‘understand’ information for the purposes of section 3(1)(a) MCA, the patient concerned must believe that information” (paragraph 55). Unfortunately, however, as King LJ noted (at paragraph 54), Munby J had founded himself upon a passage in an earlier judgment in Re MB (Medical Treatment) [1997] 2 FLR 426 which did not, in fact, say what he had identified it as saying. Rather, Butler-Sloss LJ in Re MB had been saying that a lack of belief in the relevant information may indicate that the person does not have capacity to make the decision.
As King LJ noted:
57. During the course of submissions, Mr Sachdeva, having heard the submissions of the other parties and in discussions with the Court as they looked together with him at Re C and at the use of the word may by Butler-Sloss LJ in Re MB, refined his submissions, so that his final position on behalf of the Trust was that:
“Where there is objectively verifiable medical consensus as to the consequences of not having medical treatment, if a person does not believe or accept that information to be true, it may be that they are unable to understand it and/or unable to weigh it for the purposes of the MCA.”
58. This approach dovetails with that of both the Official Solicitor and of MIND (Mr Quintavalle on behalf of the appellants, chose not to concentrate to any extent on this aspect of their grounds of appeal). The Official Solicitor submitted that a person who does not believe relevant information, whether it be factual or opinion, may lack capacity, but equally they may not. The meaning of each of the words “understand”, “use” and “weight” is, she submits, different from the meaning of the word “believe.” The statutory language Ms Gollop submits is complete in meaning: there is no missing meaning, and no implicit or subsumed meaning that needs to be made explicit and no addition or embellishment is required. I agree.
59. As McFarlane LJ said in PC and NC:
“37. The central provisions of the MCA 2005 have been widely welcomed as an example of plain and clear statutory language. I would therefore deprecate any attempt to add any embellishment or gloss to the statutory wording unless to do so is plainly necessary.”
60. Nothing in the recent approach of the Supreme Court (in JB) would appear to indicate anything to the contrary.
61. It follows that in relation to the judgment with which I am concerned, in order to understand and/or to use and weigh up the relevant information, Sudiksha’s belief as to her prognosis and the likelihood of her receiving effective nucleoside treatment was relevant, but not determinative as to whether she was able to make a decision under section 3 and therefore satisfy the functional test.
King LJ then undertook a detailed analysis of the evidence before Roberts J and the way in which Roberts J had approached that evidence, before drawing the threads together in respect of this aspect of the appeal as follows:
123. As discussed above in my judgment from paragraphs [48] to [60] above, there is no specific requirement of belief, whether subsumed into the general requirement of understanding or in the ability to use and weigh information or otherwise. In as much as this Court is influenced by any of the pre-MCA cases, in my view the proper approach is that of Butler-Sloss LJ in Re MB: an absence of belief may but not inevitably will, on the facts of a particular case, lead to a clinician or a court to conclude that the functional test in section 3(1) is not satisfied and that the person in question does not have the ability to make the decision in question.
124. All that is required is an application of the statutory words without any gloss. “Does this person have the ability to understand?”, “Is this person able to use and weigh this information?” The danger is that the introduction of the word “belief” is either the same as the statutory test, in which case it is otiose or, if that is not the case, there is the risk that by introducing a hard-edged requirement of ‘belief’ people will look for something different from the statutory test which is wrong in law. All that is required is the application of the words of the statute.
125. Unsurprisingly, both the judge and Dr Mynors-Wallis approached the case on the basis that Sudiksha’s inability to believe that she was going to die soon and that nucleoside experimental treatment was not going to help, led inexorably to the conclusion that she was unable to satisfy the functional test as she did not understand the information and was unable to weigh and use it.
126. The judge at [93] agreed with Dr Mynors Wallis that Sudiksha was “unable to make a decision for herself in relation to her future medical care, because she does not believe the information she has been given by her doctors, absent that belief, she cannot use or weigh that information as part of the process of making the decision”.
127. She then moved on to consider (essentially by reference to Dr Mynors-Wallis’ first report) whether Sudiksha was unable to make a decision in relation to her medical treatment because of an impairment of mind. The judge’s approach at [103] (paragraph [114] above) to belief/acceptance again fed into this critical issue: “her complete inability to accept the medical reality … is likely to be the result of an impairment of mind”.
128. Whilst the wording of Ground 6 is somewhat confusing, the appeal has been argued by all parties on the basis that the alleged error of law on the part of the judge was in relation to her approach to the statutory test in saying that Sudiksha’s refusal or inability to believe the ‘information’ alone resulted in her failing the functional test in section 3(1) MCA. It follows in my judgment that the appeal must succeed on this ground as, for the reasons set out above, the judge made an error of law in regarding the absence of belief as determinative of the functional test. This was an error made through no fault of her own given that she was applying the test as set out by Munby J in Re MM.
129. It follows that the Trust’s concession was well made. The proper application of the statutory test does no more than reflect that, where there is an objectifiable verifiable medical consensus as to the consequences of having or not having medical treatment, if the patient does not believe or accept that information to be true, it may be that they are unable to understand and or use and weight the information in question.
King LJ went on to note that it was not necessary for the Court of Appeal to determine whether “upon the application of the less absolute test in relation to belief, the court would have still concluded that Sudiksha was unable to make a decision for the purposes of the functional test” (paragraph 130). This was because the Court of Appeal found that Roberts J had fallen into further error by rejecting the unanimous expert evidence as to capacity. She started with the important proposition:
132. That judges are entitled to disagree with an expert witness needs no rehearsing. In AB v BG (Re G and B (Fact -Finding hearing) [2009] EWCA Civ 10, Wall LJ (“AB v BG”) said at [17] that that proposition has an “equally obvious corollary”. There must, he said, be “material upon which the judge in question can safely found his or her disagreement, and he or she must fully explain the reasons for rejecting the expert’s evidence.”
133. Turning once again to Kings College, MacDonald J said:
“39. Finally, whilst the evidence of psychiatrists is likely to be determinative of the issue of whether there is an impairment of the mind for the purposes of s 2(1) , the decision as to capacity is a judgment for the court to make (see Re SB [2013] EWHC 1417 (COP) ). In PH v A Local Authority [2011] EWHC 1704 (COP) Baker J observed as follows at [16]:
‘In assessing the question of capacity, the court must consider all the relevant evidence. Clearly, the opinion of an independently-instructed expert will be likely to be of very considerable importance, but in many cases the evidence of other clinicians and professionals who have experience of treating and working with P will be just as important and in some cases more important. In assessing that evidence, the court must be aware of the difficulties which may arise as a result of the close professional relationship between the clinicians treating, and the key professionals working with, P.’”
134. Mr Quintavalle in oral argument, sought to go significantly further than either AB v BG or Kings College. He submitted that a judge cannot disagree with the opinion of an expert absent there being available to the court other alternative expert medical evidence in support of the judge’s view. In other words, Mr Quintavalle appeared to submit that a judge may not disagree with a unanimous view of experts, but may only decide as between more than one opposing expert view. That cannot be right, although it is undoubtedly the case that where the judge disagrees with a unanimous view which has been expressed by appropriate experts, a reader will look carefully to understand the judge’s “full explanation” for having rejected that common view .and for the identification by the judge of the material upon which their disagreement is based.
135. In the present case, the judge was faced with; the united view of Dr Bagchi and Dr Mynors-Wallis, the endorsement of the Official Solicitor (who had the advantage of having ascertained Sudiksha’s wishes) and of Dr Tunnicliffe’s virtual concession that his ‘delusion’ position was not sustainable and that what he was in reality concerned about was the right best interests decision for Sudiksha.
136. Critically also, the judge’s reasons for rejecting the views of the experts who (notwithstanding their error in relation to belief) were of the view that Sudiksha had capacity, had to be considered and explained against the statutory presumption of capacity, the principle of autonomy and the fact that an unwise decision is not an incapacitous decision.
137. In my judgment, the judge fell into error in her approach which was essentially to adopt Dr Mynors-Wallis’ first report with no analysis as to why it was to be preferred to his second report which had been written having seen and assessed Sudiksha and which dovetailed with Dr Bagchi who had had the advantage of seeing her on a number of occasions including in the absence of her family.
138. Once one displaces an absolute requirement for “belief”, then, where a 19-year-old young woman, fully conscious and suffering no identifiable mental illness or loss of brain function and with the full support of her close knit family, refuses to accept that her death is imminent but says loud and clear to two psychiatrists that she wants to “[d]ie trying to live”, it will take a great deal to displace the principle of autonomy and the presumption of capacity, no matter how unwise her decision to eschew palliative care may have seemed to a more mature mind.
139. It follows that against that backdrop, the judge in my judgment, failed to give sufficient reasons for disagreeing with the unanimous view of the experts that Sudiksha had capacity to make decisions as to her medical treatment.
At paragraph 140, the Court of Appeal took the other grounds of appeal shortly. Ground 4 was entirely specific to the facts of the case, so I do not set out here.
i) Ground 3: professional diagnosis of an impairment of the mind:
Re D (Children) [2015] EWCA Civ 749 did not, as implied in this ground, say that a professional diagnosis of an impairment of mind is required before it can be said to have been established. In Re D at [30], I simply said that the diagnostic test[1] will require evidence from a suitably qualified person, which will usually be a person with medical qualifications. This was said in the context of a case where it was agreed that the person in question suffered from significant learning difficulties. In case there is any room for misunderstanding, I make it absolutely clear that I endorse the approach of MacDonald J in North Bristol that no formal diagnosis of impairment is required.
[…]
iii) Ground 5: Application of Re JB to the present case:
Mr Quintavalle submitted that the test in JB did not apply because in JB, unlike the present case, there was no doubt that the patient concerned had an impairment of mind and the issue there was as to whether, notwithstanding that impairment, the patient could consent to treatment. Mr Quintavalle drew the attention of the Court to the Mental Capacity Act 2005 Code of Practice (“the Code”) which stipulates the two-stage test of capacity, the first stage (at 4.11) being to establish whether someone has an impairment i.e. the diagnostic test. In this context he draws the attention of the court to section 42(5) MCA which requires the Court to “take into account” the Code.
Responding to this submission, Mr Sachdeva rightly drew the Court’s attention to Lawson, Mottram and Hopton, Re (Appointment of personal welfare deputies) [2019] EWCOP 22; [2019] 1 WLR 5164 at [16] which makes it clear that it is the wording of the statute as authoritatively interpreted by the Court which must prevail over the Code. In my judgment, this and indeed any court, is in any event, bound by the Supreme Court decision in JB namely that questions under section 2(1) MCA should be first as to whether P is unable to make a decision for themselves by reference to section 3(1) the functional test. If they are not so able, consideration is given at the second stage to whether that inability is because of an impairment of, or a disturbance in, the functioning of the mind or brain (section 2(1), the diagnostic test).
I should say for completeness sake, that the Code with which the Court is concerned was first published in 2007. A consultation ran between March and July 2022 in relation to the proposed updating and revision of the Code. The Consultation said that the Code was to be revised because: “the existing Code guidance needs updating in light of new legislation and case law, organisational and terminological changes, and developments in ways of working and good practice”. The draft new Code, dated June 2022, adopts the JB approach to assessment of capacity at chapter 4.
Comment
My views at the time of the first instance hearing can be found here. As I was involved in the case (with Neil Allen) at Court of Appeal level, I do not set out an equivalent commentary here, save to note that the decision (which is not being appealed) has put beyond doubt both the proper place of belief and also the ordering of the capacity test.
[1] King LJ had earlier noted the submission made on behalf of Mind that, rather than “diagnostic test,” “a more appropriate term would be to refer to the ‘impairment test rather than the diagnostic test given that […] no diagnosis of mental illness is required in order to satisfy the test (see North Bristol NHS Trust v R [2023] EWCOP 5 (“North Bristol”) at [48])” (paragraph 40).
