NHS North Central London Integrated Care Board v Royal Hospital for Neuro-Disability & Anor [2024] EWCOP 66 (T3) (14 November 2024)

Background

Hot on the heels of AB, this was another judgment concerning RHN’s processes for best interest reviews as to whether CANH should be continued.

In this matter, XR had suffered a sever hypoxic ischaemic brain injury following an out of hospital cardiac arrest secondary to a myocardial infarction.? XR was subsequently transferred to RHN where he was assessed to be in a prolonged disorder of consciousness (PDOC) at the lowest end of the spectrum, namely a vegetative state.

This was an application made by NHS North Central Integrated Care Board for determination that it was lawful and in XR’s best interests for those treating him not to continue CANH through a PEG tube and to provide palliative care only.

It was acknowledged by the clinical director at the RHN that at the time of XR’s admission to the RHN in 2018 there was no formal process for best interest reviews as to whether CANH should continue, such a system only commencing in Spring 2013 following North West London Clinical Commissioning Group v GU [2021] EWCOP 59.

Legal framework

This is set out in the analysis of AB and will not be repeated here as the legal framework is well established.

Findings

Mrs Justice Theis was satisfied that it was not in XR’s best interests to continue to receive CANH.? Paragraph 67 of the judgment sets out how she reached this conclusion:

“Whilst I recognise and carefully weigh in the balance the strong presumption in favour of preserving life I am satisfied when considering the evidence as a whole that it is not in XR's best interests to continue to be in receipt of CANH. This is because the benefits of such treatment continuing are significantly outweighed by the considerable burdens for XR caused by the daily care interventions, of which there is detailed evidence, that are required to continue in the context where there is no prospect of any change in XR's diagnosis or prognosis. I accept the evidence of both Dr Hanrahan and Professor Wade of a trajectory of decline in XR's position where the burdens of such treatments and interventions are likely to increase. For the reasons set out above XR's wishes and feelings are unknown and, as a consequence, cannot be factored in the court's consideration of what is in his best interests. The issue between Dr Hanrahan and Professor Wade as to whether XR can experience pain is considered in the context of there being a risk of the possibility that XR may experience pain but it can be no higher than that and in the light of the other considerations that factor, in the circumstances of this case, does not have a material bearing on the balancing exercise undertaken by the court in reaching a decision as to what is in XR's best interests”.

Discussion and guidance

Mrs Justice Theis stated that she considered that this case was rightly the subject of an application to the Court of Protection for determination.? The decision maker had considered the position to be finely balanced and even though others took a different view, that judgment should be respected and should not feel under pressure either way regarding decisions reached.

At paragraph 69 it was noted that in their written submissions prior to the hearing each party invited the court to provide judicial guidance in cases such as this where the best interest decision was finely balanced due to a lack of information about the patient’s likely wishes, feeling, beliefs and values.? Whilst Mrs Justice Theis ultimately refused to provide this guidance, what she did say is set out below (the relevant parts being in bold):

Guidance

69. In their written submissions prior to this hearing each party invited the court to provide judicial guidance in cases such as this where those charged with making a best interest decision considered it to be finely balanced due to the lack of information about a patient's likely wishes, feelings, beliefs and values.

70. In An NHS Trust and others v Y [2019] the Supreme Court held that if the provisions of the MCA are followed and the relevant professional guidance observed, and there is agreement upon what is in the best interests of the patient, the patient may be lawfully treated in accordance with that agreement without application to the court. At [125] Lady Black concluded

'If at the end of the medical process, it is apparent that the way forward is finely balanced, or there is a difference of medical opinion or a lack of agreement to a prolonged course of action from those with an interest in the patient's welfare, a court application can and should be made. As the decisions of the ECtHR underline, this possibility of approaching a court in the event of doubts as to the best interests of the patient is an essential part of human rights…'.

71. In Y the Supreme Court did not provide an exhaustive list of such cases but did observe at [126]

'…I would emphasise that, although application to court is not necessary in every case, there will undoubtedly be cases in which an application will be required (or desirable) because of particular circumstances that appertain, and there should be no reticence about involving the court in such cases.'

72. In the Guidance issued by Hayden J following Y in Applications Relating to Medical Treatment: Guidance Authorised by the Honourable Mr Justice Hayden, The Vice President of the Court of Protection [2020] EWCOP 2 (The Vice President's Guidance) it is stated at [8]

'If at the conclusion of the medical decision-making process, there remain concerns that the way forward in any case is:…(d) there is a potential conflict of interest on the part of those involved in the decision-making process (not an exhaustive list) then it is highly probable that an application to the Court of Protection is appropriate. In such an event consideration must always be give as to whether an application to the Court of Protection is required.'

The Vice President's Guidance continues at [9]

'Where any of the matters at paragraph 8 above arise and the decisions relates to the provision of life-sustaining treatment an application to the Court of Protection must be made. This is to be regarded as an inalienable facet of the individual's rights, guaranteed by the European Convention of Human Rights ('ECHR'). For the avoidance of any doubt, this specifically includes the withdrawal or withholding of clinically assisted nutrition and hydration'.

73. The 2020 RCP PDOC Guidelines consider when an application to court is required stating at 4.8.2 under the category of 'Finely balanced' decisions for which court determination is required:

'Other examples may be where the patient has never been able to express their wishes and feelings or where there is absolutely no information about their life before brain injury, despite the involvement of an IMCA. In reality, however, this group will be small as it is very rare not to be able to get some information about the individual's life story to guide the decision.'

74. S42(2) and (5) MCA requires decision makers to have regard to the Code of Practice. At 5.39, 5.41 and 5.51 the Code emphasises the importance of 'all reasonable efforts must be made' and, if required, decision makers must be able to explain why they did not speak to a particular person in seeking out as much information as possible to inform the consideration under s4(6) MCA. This emphasises that consideration is not restricted to previously expressed views limited to the continuation of CANH. It includes the beliefs and values that would be likely to influence their decision if they had capacity and the other factors that they would be likely to consider if they were able to as derived from the broader canvas of their life.

75. In circumstances involving the provision of serious medical treatment where an NHS body is satisfied there is no person whom it would be appropriate to consult in determining what would be in the patient's best interests s37 MCA requires the appointment of an IMCA. Their role and function is set out in paragraph 6 of The Mental Capacity Act 2005 (Independent Mental Capacity Advocates)(General) Regulations 2006. An IMCA is able to access information in the patient's health, care or social services records (s35(6) MCA). The IMCA report in this case does not provide any information as to what steps, if any, were taken by the IMCA to access information to in XR's records.

76. In her written submissions at the start of this hearing the Official Solicitor submitted 'Absent rigorous efforts to obtain information about P for the purposes of s4(6) MCA, there is inevitably a danger that the focus will fall not on what treatment choice they would have made, but on other aspects of the best interests test such as the medical prognosis and quality of life.' At that stage the Official Solicitor submitted that in a PDOC case in which it is not possible to ascertain P's wishes, feelings, beliefs and values because there are no family members or persons with an interest in P's welfare to consult and even with the proportionate independent second opinion that the 2020 RCP PDOC Guidelines, require the 'treating team who proposed the withdrawal of CANH are effectively judges in their own cause' and it is in such a patient's best interests for the issue of continuation of CANH to be determined by the court. The Official Solicitor contended that 'Quite apart from rigorous judicial consideration of their best interests in relation to the treatment decision, an application would result in the appointment of the Official Solicitor as their litigation friend, her independent analysis of whether further investigations should be undertaken, and further information sought, with the compulsion of a TPDO [third party disclosure order] where appropriate.'

77. Directions were made at the end of the hearing for the parties to liaise to produce an agreed note regarding any judicial guidance that was being sought. Since that direction the position of the parties has changed.

78. On the application of the RHN permission was given for a draft of any proposed guidance to be sent to Professors Turner-Stokes and Wade in their capacity as the Chair and co-chair of the 2020 RCP PDOC Guidelines. In a letter dated 27 October 2024 they informed the court and the parties that the RCP is already in dialogue with the British Medical Association (BMA) and the General Medical Council (GMC) and is convening an appropriate multi-agency sub-group to develop updated supplementary guidance to address issues raised in recent cases. The letter cautions against issuing any guidance based on a single case with the views limited to those involved in the case.

79. The RHN supports that position and no longer invites the court to formulate judicial guidance but does invite the court to 'explain its views as to whether this case should have been brought before the Court and to explain why'.

80. The Official Solicitor largely maintains her position about the need for judicial guidance and proposes the court should identify the following as a category of case which must be brought to court:

Cases where P is clinically stable in which there is a consensus within the treating clinical team that it is in P's best interests not to continue longstanding treatment which, if discontinued, will result in P's death, but

there are no family members, persons interested in P's welfare, or persons engaged in caring for P (other than those acting in a professional capacity or for remuneration) who are available to consult;

and

either the treating clinical team or any appointed IMCA have concerns that they cannot, from the information available to them, reasonably ascertain P's past and present wishes and feelings about that decision, the beliefs and values that would be likely to influence P's decision if P had capacity, and the other factors that P would be likely to consider if P was able to do so.

81. The Official Solicitor does not support the suggestion to await the outcome of the RCP process due to the lack of any given timescale as to when that may be available and questions whether the existing 2020 RCP PDOC Guidelines provided sufficient safeguards in this case. In light of this court's decision in NHS North West London Integrated Care Board v AB & Ors [2024] EWCOP 62 re-emphasising the need for timely best interests decisions and applications to the Court, the Official Solicitor considers that there may be a renewed focus nationally on the best interests of patients in PDOC in the months ahead. Until the recent letter from Professor Turner-Stokes and Professor Wade the RHN had advocated judicial for guidance to give greater clarity.

82. The Official Solicitor submits that context needs to be considered. The UK Parliament Postnote No 674 July 2022 records there are between 4,000 and 16,000 patients in VS in nursing homes in England and Wales, with three times as many in MCS and an unknown number of people with PDOC cared for in other settings. In his oral evidence, Professor Wade recognised there was a group of patients in PDOC where the clinicians carry on providing CANH by default because there are no friends or family to consult. Within that group, the Official Solicitor submits, there may be patients who are currently receiving life-sustaining treatment the continuation of which may not be in their best interests. In the Official Solicitor's view even in a specialist setting such as the RHN XR was the subject of annual reviews from 2019 when he was assessed as being in a VS yet no application was made to the court until five years later in April 2024.

83. The Official Solicitor submits whilst the ICB rightly brought this application, when it was made the second opinion in accordance with the 2020 RCP PDOC Guidelines had not been obtained and Professor Wade's firm conclusion was based, in part, on inferences he made regarding XR's wishes and feelings and beliefs and values which the Official Solicitors submitted was incorrect and not soundly based.

84. The Official Solicitor submits judicial guidance that requires (as a matter of practice not as a rule of law) cases such as XR's to be brought to court will facilitate

a)??? rigorous judicial consideration of P's best interests in relation to the treatment decision;

b)??? the appointment of the Official Solicitor as their litigation friend, her independent analysis of whether further investigations should be undertaken and further information sought, with the compulsion of a TPDO where appropriate; and importantly

c)??? a reduction in the pool of patients who are unlawfully receiving continued longstanding life-sustaining treatment by default because of an absence of family or friends to consult.

85. Any judicial guidance given at this stage can, the Official Solicitor submits, be revised, if appropriate, in light of any supplementary national RCP PDOC Guidelines published in the future.

86. Whilst the RHN's primary position was that the court should not issue any guidance, in their written submissions they made observations on the proposed draft submitted by the Official Solicitor.

87. The ICB largely supports the submissions of the Official Solicitor.

88. I have carefully considered the detailed and measured submissions on behalf of the Official Solicitor and recognise the very real concerns she has in this case, as she did within a different factual context in GU and AB. The court shares that concern noting, as the Official Solicitor submits, that even in a specialist facility such as the RHN XR remained drifting in a vacuum of ineffective best interest decision making for a number of years. To that extent the observations in AB for a structure that provides for timely best interest decisions being made apply as much in this case in the same way as it did in AB.

89. Not without some hesitation, I am, at this stage, going to decline the invitation for judicial guidance as I recognise the robust process referred to by Professor Turner-Stokes and Professor Wade has been started. The message from this judgment is for that to take place without undue delay, and for a timetable and framework for that review process to be published as a matter of urgency so that any revised Guidelines can be in place sooner rather than later and there is transparency about the timeframe for when that will take place.

90. Pending that, this case and AB provide an important timely reminder to any facility responsible for a patient in PDOC to carefully and proactively consider the relevant Guidelines/Guidance (both the 2020 RCP PDOC Guidelines and the Vice President's Guidance), to ensure there is a rigorous process for best interest decisions in operation by those responsible for that patient's care which is in accordance with the relevant Guidelines/Guidance, and that any decisions for applications to the Court of Protection are, if required, promptly brought before the Court without undue delay or drift.

91. It is also important in the relatively unusual cases such as this, where the wishes and feelings of the patient are not readily available, to have clarity about who is responsible for making enquiries and seeking records about that person to avoid delay and ensure there is consistency in approach to obtaining this important information. In such circumstances a relevant part of the decision whether to make an application to the Court of Protection could involve the power of the court to make third party orders for disclosure and the rigorous support the Official Solicitor can provide to ensure that is done.

92. In my judgment the ICB has an important, critical role to play. As the Clinical Lead for the ICB set out in her statement 'The ICB will undertake as a minimum an annual review of the care commissioned to ensure that the care package remains appropriate to meet the service user's assessed needs' (emphasis added). For these reviews to be an effective mechanism they should include active consideration by the ICB at each review to be vigilant that the care package includes an effective system being in place for best interest decisions to be made in these difficult cases so that drift and delay is avoided. The ICB should not just be a bystander at these reviews.

93. As Hayden J stated in GU

[103] '…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.' and

[105] '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 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'.

94. The wholly unacceptable delays in GU, AB and now this case send out a blunt but clear message that such delays in effective best interest decision making are unacceptable and wholly contrary to the patient's best interests which there is a clear statutory obligation on the responsible care providers to protect.

The full judgment can be found at https://www.bailii.org/ew/cases/EWCOP/2024/66.html.