NHS North Central London Integrated Care Board v Royal Hospital for Neuro-Disability & Anor [2024] EWCOP 66 (T3) is the most recent in a sequence of decisions given by Theis J regarding best interests decision-making in the context of Clinically Assisted Nutrition and Hydration. It concerned, again, delay in best interests decisions being made arising out of a lack of an effective system for such decisions being made at the Royal Hospital for Neurodisability. These were considered by Theis J in NHS North West London Integrated Care Board v AB & Others [2024] EWCOP 62. The particular feature of XR’s case was that he had not been visited since 2018 and had no known family or friends who can provide details as to his wishes, feelings, values and beliefs.
Theis J noted that:
66. I agree with the submissions of all parties that in the particular circumstances of this case the court should not make any inferences on the limited information it has about XR regarding his wishes and feelings. To do so would bring with it a high risk of speculation. The reality is that despite the extensive efforts made by the RHN and the Official Solicitor little reliable information is known as to what XR’s wishes and feelings would be regarding the decision the court is faced with now. I am satisfied no further enquiries can or should be made and this is one of those relatively rare cases where it is not possible to ascertain or assess XR’s wishes, feelings, beliefs and values under s4(2) and (6) MCA or those of his family or friends.
67. 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.
68. am satisfied this case was rightly the subject of an application to the Court of Protection. The decision maker, Dr A, considered the position to be finely balanced. Even though others took a different view that clinical decision and judgment should be respected. It is important that having properly considered the relevant Guidelines/Guidance clinicians should not feel under pressure either way regarding decisions that they have reached. Having said that, it remained unclear what system, if any, was in place for seeking disclosure of XR’s records, who was undertaking that, and what role the IMCA played. In this case it is right to record that the Official Solicitor was able to gain more information about XR through the third party disclosure orders made once these proceedings were commenced. In the end it made no difference to the information that was available, although it could easily have done, and if the application had not been made would have risked relevant information not being available in reaching a best interest decision.
An issue arose as to whether the court could or should give guidance as to what should happen “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” (paragraph 69). The Official Solicitor urged the court to issue such guidance; 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 cautioned against issuing any guidance based on a single case with the views limited to those involved in the case.
This meant, in turn that Theis J took the following position:
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.
Theis J also emphasised that:
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.
