Re Sudiksha Thirulamesh (dec’d)
Summary
The Court of Appeal has refused permission to appeal the decision of Cusworth J in NHS North Central London ICB v PC et al [2024] EWCOP 31. The case concerned a 31 year old woman, who suffered a cardiorespiratory arrest and collapsed at home. A lack of cardiac output for about 30 minutes led to her brain being deprived of oxygen, which caused a severe hypoxic ischaemic injury. She was left in a Prolonged Disorder of Consciousness ('PDOC'), at the low end of the spectrum of awareness, for four years and was now 35. An application was made by the ICB, who commissioned her inpatient hospital care, that it was not in her best interests to continue clinically assisted nutrition and hydration in circumstances where there was a lack of agreement from some members of her family. A paper prepared by the second opinion doctor required by the RCP PDOC guideline process, Professor Wade, was circulated shortly before the hearing, indicating, as King LJ put it, that:
50. Professor Wade's position had evolved from a view that it is unlikely that a person in PDOC will experience pain but that it "cannot be excluded", to "we have no convincing evidence that an unconscious person cannot experience pain". What the judge knew and was entitled to take into account was that PC was and is exhibiting significant and distressing (for all concerned) pain behaviours in the form of crying, groaning and grimacing which behaviours appear to respond to pain relieving medication. Further, that so far as expert understanding is concerned, the level of uncertainty about how pain is experienced, if at all, by people in PDOC is such that current policy is to treat people who exhibit pain behaviours in ways designed to minimise and control pain.
However, Professor Wade’s:
51. […] evolving view about this issue had no impact upon his evidence as to PC's diagnosis, level of awareness or need for further assessment of her condition, all of which remained constant throughout, as did that of Dr B and Dr A.
PC’s mother sought permission to appeal on four grounds.
Ground 1: The decision not to adjourn to obtain expert medical evidence was unfair in circumstances where the only evidence was from a second opinion doctor who fundamentally reversed his opinion on the key point in the case (PC's experience of her life) while giving evidence.
Ground 2: The Court conducted its own assessment of PC's experience of pleasure, contrary to authority.
Ground 3: Failing to determine the relevance of "covert consciousness" to the assessment of people in a persistent disorder of consciousness.
Ground 4: It was an error, and contrary to authority, to decide that it was appropriate to cease treatment for someone with a low burden of care and no expressed wishes not to have care. That decision failed to pay lawful respect to the sanctity of life and PC's right to life.
Grounds 2 and 3 were dismissed crisply:
92. So far as Ground 2 is concerned, the extensive independent evidence gathered over a number of years was that PC derived no experience of pleasure. The judge summarised the evidence before him accepting it, as he was bound to do absent any evidence to the contrary. He did not conduct his own assessment. Permission to appeal on this ground is refused.
93. So far as Ground 3 is concerned, Mr Lawson's exploration of the discrete issue of 'covert consciousness' in cross examination was very limited and was in the context of an academic paper by Professor Adrian Owen called "The Search for Consciousness". This brief paper explores technological developments whereby using functional magnetic resonance imaging ("fMRI") there may be demonstrated, in certain cases, residual cognition and covert awareness at some deep level. It remained however impossible to establish any form of traditional communication at the bedside. The paper records that the use of fMRI "with entirely physically non-responsive patients is still very much in its infancy" although the paper says, it has the potential to improve diagnosis.
94. Mr Lawson did not suggest that fMRI should or could be conducted on PC. This means that the judge and any other expert could only properly base their conclusion as to whether there was a correct diagnosis on the evidence available which was already before the court. The judge was entitled to conclude that PC was in a state of PDOC and that her level of awareness had been established by appropriately qualified experts. It was therefore unnecessary to have dealt expressly with 'covert consciousness' when all the evidence collected following full assessment in compliance with the PDOC Guidelines, and specifically relating to her current presentation, did not raise any clinical uncertainty. It follows that permission to appeal is also refused on this ground.
On ground 1, King LJ reminded herself that:
96. Pursuant to r.15.3(1) Court of Protection Rules 2017, the Court of Protection has a duty to restrict expert evidence to that which is "necessary to assist the court to resolve the issues in the proceedings". Those representing MC had to satisfy the judge that, notwithstanding the overwhelming evidence in relation to the diagnosis of PDOC and as to PC's level of awareness, further neurological evidence was necessary in order to resolve the proceedings. Far from answering that question, those representing MC had not complied with r.15.5 (2) and (3). No expert had been identified, there was no draft letter of instruction, no indication of the issues to which expert evidence would relate or the questions which the expert would be requested to answer. The grounds in support of the application to adjourn simply stated that "it is appropriate to carry out further investigations of [PC's] awareness".
97. In his helpful oral submissions, Mr Lawson focused on: (i) the issue that there had not been adequate assessment of PC, and that both Professor Wade and the nursing home had been in breach of the PDOC Guidance, and (ii) that Professor Wade's evidence as to 'pain' was a central point and that having changed his view on PC's ability to experience pain, it was unfair on the parties not to enquire into both that change of evidence and her awareness.
98. Mr Lawson submitted that there had been a departure from the PDOC Guidance in that there had wrongly been no full assessment of consciousness for some years. There was, he said, sparce evidence of the level of PC's consciousness and there was accordingly a need for a repeated assessment 4 years down the line. There was he said an "uncertainty as to diagnosis" which required further investigation.
99. So far as 'pain' was concerned, Mr Lawson said that it was unfair of the court to proceed on the basis of "shifting sands". Professor Wade's views on pain were, Mr Lawson said, central to the decision the court had to make, and an acceptance of his new position was not a satisfactory basis for decisions as to PC's best interests.
100. An appeal against a decision to adjourn a final hearing is a case management decision which has to be considered by an appeal court on the basis of whether the decision is fair. In Re P (A Child)(Fair Hearing)[2023] EWCA Civ 215, Peter Jackson LJ distilled twelve key principles from a range of appellate and ECHR authorities concerning the issue of whether it is fair to adjourn proceedings. It is not necessary to rehearse those principles here, although it is worth noting that Peter Jackson LJ followed his itemisation of the propositions at [46] by saying that: "[t]he essential touchstone is fairness and the weight to be given to any individual proposition or other relevant factor must be a matter for the judgment of the court in the case before it".
101. It should be borne in mind that the PDOC Guidance is just that, guidance, but in any event on an analysis of the guidance, there is in my judgment no basis whatsoever for the submission that the Integrated Care Board were in breach of the PDOC Guidance by not having repeated a full multidisciplinary assessment since PC moved to the nursing home, or that the annual reviews were inadequate. It is abundantly clear that there was no evidence of any improvement or increase in awareness on PC's part by the demonstration of pleasure. On the contrary, the only significant change was the increase in her crying and distress behaviours which was appropriately investigated.
102. As was acknowledge by the judge at [40], the evidence of Professor Wade as to PC's likely awareness of pain evolved during the hearing and it is undoubtedly the case that his view as to whether PC may suffer pain has changed. Significantly however, his evidence as to PC's diagnosis, her level of awareness and the need for further assessment of her condition was unaffected by his change in view with regard to her likely experience of pain. It was therefore wrong for it to be asserted on behalf of MC that Professor Wade had "fundamentally reversed his opinion on the key point in the case". In my view, as was submitted by Mr Hadden on behalf of the Integrated Care Board, Professor Wade's expanded definition of pain and his recognition that PC may have some experience of 'pain' should not be conflated with any change in his opinion regarding PC's level of awareness or consciousness, an opinion that was on all fours with all the clinical evidence and the annual reviews carried out by reference to the WHIMs and CRS-R tests.
103. The judge was entitled to conclude on the evidence that so far as PC was concerned at [57] "there was no evidence of any enjoyment of life. The only evidence is of her exhibiting discomfort and pain".
104. Mr Lawson has neither at first instance nor on his application for permission to appeal identified an appropriate expert or told the court what difference expert neurological evidence would bring to the determination of PC's best interests. The judge had the benefit of all the assessments set out above. The Official Solicitor gave careful consideration as to what medical evidence was required and at her request, Professor Wade answered the various additional questions she had posed in addition to having conducted a full and formal assessment such as is required by the guidance when an application to the court for an order in relation to the withdrawal of CANH is contemplated.
105. In my judgment, there is no real prospect of a successful appeal against the judge's findings that: (a) no amount of further assessment would answer the question whether PC is capable of feeling pain; and (b) there is no evidence suggesting or indicating that PC is functioning at a higher level than all the previous assessments, or that this issue requires further investigation. Permission to appeal is refused on Ground 1.
King LJ did, however, note that:
106. I should say for completeness that whilst in this case it has not led to the granting of permission to appeal, I can understand that those representing PC felt 'wrong footed' by the late introduction of the Pain Paper which was, as I understand it, introduced other than by court direction or agreement between the parties. I would remind legal representatives who have the lead in the instruction of experts, that the filing of additional expert evidence should be done following an application to the court, which application can, no doubt, be dealt with on paper if the parties are in agreement.
As to ground 4, the case put to the court was that there was “a compelling issue of principle for this court to consider, namely whether it is right in any case where there was a low burden of care and no expressed wishes on the part of a patient not to have care for a judge to make an order that it is in the best interests of that patient to withdraw CANH.” King LJ was clear that:
109. In my judgment, there is no need for this court to undertake such a task. The legal principles applicable to these cases are clear and well established. Whilst Mr Lawson seemed to suggest that the time might have come to update or clarify the principles set out in Aintree Hospital NHS Trust v James [2013] UKSC 67 ("Aintree"), Baroness Hale's judgment remains the lodestar which guides the courts when considering these anxious cases and it therefore remains the case that the sanctity of life is not absolute and that life sustaining treatment can nevertheless be withdrawn where it is not in the best interests of the patient. Time and again judges rightly have in mind [36] of Aintree:
"36. The courts have been most reluctant to lay down general principles which might guide the decision. Every patient, and every case, is different and must be decided on its own facts. As Hedley J wisely put it at first instance in Portsmouth Hospitals NHS Trust v Wyatt [2005] 1 FLR 21, "The infinite variety of the human condition never ceases to surprise and it is that fact that defeats any attempt to be more precise in a definition of best interests" (para 23). There are cases, such as Bland, where there is no balancing exercise to be conducted. There are cases, where death is in any event imminent, where the factors weighing in the balance will be different from those where life may continue for some time."
On the facts of the case, moreover:
110. In any event, there is no merit in the individual features upon which the need for guidance was said to be based. The judge had well in mind the sanctity of life and said in terms at [62] that "…the simple preservation of life…. is of course a fundamental principle of the utmost importance". Mr Lawson sought to suggest that PC has a 'low burden of care'. Whilst it is undoubtedly the case that PC is stable as to her base line and is not the subject to regular intrusive treatment such as ventilation or regular suctioning, the judge unsurprisingly found as a fact that "the burden of her condition on PC is a heavy one". PC is reliant on nursing care for everything, and her parlous condition is as found as by the judge as set out at [79] above and included her displays of the pain behaviours which have been described. Finally, the judge gave detailed consideration as to the sparse evidence of PC's wishes and feelings and was conscious that PC had not expressed a view as to whether to receive CANH or not to receive CANH. This was a factor which he properly weighed in the balance together with the burden of care and the sanctity of life.
King LJ, with whom Baker and Bean LJJ agreed, therefore refused permission to appeal.
Comment
As this was a decision refusing permission to appeal, the decision has no wider precedent value (without diminishing at all its magnitude for the family and the medics involved). It is, however, clear that the appellate courts are not sympathetic to attempts to revisit the established principles relating to life-sustaining treatment authoritatively laid down in Aintree v James.
Although the Court of Appeal did not refer to this, it is perhaps worth noting the fMRI scanning process relied upon by the appellant was also considered in the RCP PDOC guidelines at section 2.4, which make clear that such scanning (along with electrophysiology):
do not form part of the standard assessment battery, nor do they represent a ‘practicable step’ required by s.1(3) MCA to support a person’s capacity to make relevant decisions. They should be only applied in the context of a registered research programme.
