NHS South East London Integrated Care Board v JP & Ors [2025] EWCOP 4 T3 and [2025] EWCOP 8 (T3) are a pair of cases concerning governance failures in best interests decision-making in relation to a man in a Prolonged Disorder of Consciousness. They concern the Royal Hospital for Neuro-disability, and follow other recent decisions of Theis J. For present purposes, it is the second judgment which is of most wider relevance. In it, Hayden J made a number of observations about the operation of s.4(7) MCA 2005, and of the role of ICBs in such cases.
Section 4(7) MCA
One of the issues concerning Hayden J was as to the approach that had been taken to involving JP’s family and taking into account their views.
18. It is important to say something of the relevance and weight to be afforded to the views of family members, when evaluating best interests. Grief, which does not await death, frequently ambushes families in these challenging circumstances. Sometimes, their own sense of loss can become the prevailing emotion. This is of course entirely normal and natural. Those charged with the task of identifying what P would likely have wanted must be alert to the reality and focus of their enquiry. The views of family members, their own wishes, feelings, religious and cultural beliefs, are, in themselves, of little, if any, relevance. I emphasise that their views are being sought solely to illuminate the likely wishes and feelings of P. Their evidence is garnered to assert P’s autonomy, not to subjugate it. This case is, as my earlier judgment seeks to demonstrate, a striking example of this point. To some extent, many of the family members here identify as Pentecostalists, certainly many have strong Christian faith. Their views, however, on these difficult ethical issues vary widely. I have placed emphasis on the evidence of those family members who have eschewed their own religious and cultural views and concentrated on the views and beliefs of JP. (emphasis added)
In the instant case:
19. It is clear that the RHN recognised these different views within the family. The immediate family, to use Ms Paterson’s helpful term, all held clear views that continuing treatment was entirely contrary to what JP would have found tolerable. For the reasons set out in the earlier judgment, those views were expressed cogently and were supported by substantial and choate evidence. Those family members, believing that their father was beyond any experience of his surroundings, eventually drifted away from the hospital and turned, as they had to, to their own lives and young families. VP (JP’s daughter) told me, expressly, that she stopped attending the hospital with any frequency because her father was “no longer there”. The wider family, perhaps in part driven by moral and religious obligation, as well as love, continued to attend. I suspect, and I say this without any criticism at all, that their views became heard most clearly and consistently. I have found that those views were not JP’s.
20. With no apology for further repetition, because the point needs to be crystal clear, the objective of the discussions with family members is not to ascertain their views and beliefs but to ascertain if what they have to say can illuminate P’s wishes and beliefs. There has been some discussion as to the need to be sensitive to “the family’s views”. This referred to JP’s sisters’ and mother’s strict religious beliefs. Of course, I would expect all concerned to be respectful and polite, and I have no doubt they were. However, delaying decision-making for JP in consequence of a heightened sensitivity to the religious views of some of his family would be to neglect him and to lose focus on the central question of what is in JP’s best interests. The incapacitous individual, with no awareness of the outside world, is uniquely vulnerable and requires vigilantly to be protected.
21. It was clear from Dr Hanrahan’s evidence that he was convinced from the beginning, and particularly after his conversation with JP’s partner, that JP would not have wished to languish as he now has done. There was strong and convincing evidence as to what JP would have wanted from the outset. I have struggled to understand why there was not a timely application to the Court. I have not discovered any satisfactory explanation. Dr Hanrahan did not seek to proffer one. It is important to say that when there is disagreement within a family as to where P’s best interests lie, that is a signal to bring the matter to Court. It most certainly is not a reason to spend months or, as here, years in hand-wringing procrastination. Moreover, the divide in the family really lay between those who had drilled deeply into the beliefs and codes by which JP led his life, and those who advanced doctrinal objections. Keeping JP at the front of the process and applying the best interests test in the manner required, has, on a proper analysis, indicated throughout, that the evidence of the former is qualitatively strongest. A failure to act when confronted by a family disagreement is to elevate that dispute above the best interests of the patient. It is also necessary to say that where the focus is, as it must be, on what P would most likely have wanted, and where there is a reliable foundation (as here) to establish what those views are, it is not helpful or in P’s best interests to spend months tracking down family members whose addresses are difficult to find. The exercise is a proportional one, predicated on the quality of the available evidence and the undesirability of delay. (emphasis in the original)
The systemic problem
It is important to note that Hayden J had his attention drawn to the Parliamentary Office of Science and Technology POSTNote (July 2022) identifying that, as at that point, there were “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 care in other settings.“ In light of the very modest number of applications relating to PDOC patients, the Official Solicitor inferred that ““there may well be significant numbers of PDOC patients in nursing homes across England and Wales in respect of whom a full consideration of their best interests has not taken place and that the delays seen in this case may well be far from unique to the RHN.” Further, Hayden J endorsed the observations that:
that the relatively early discharge of PDOC patients from both an acute hospital or a brain rehabilitation service to a General Practitioner or nurse led community-based service may be a significant feature. As Ms Paterson says, the reality is that P is moved from an environment in which they have been reviewed regularly by a clinician with specialist knowledge (e.g. neurology or neuro-rehabilitation) to an environment in which medical reviews are performed by a General Practitioner review most frequently generated by symptoms or medical problems separate from the prolonged disorder of consciousness.
The role of ICBs
Hayden J was, as had been Theis J in the previous cases, very concerned about the apparently passive stance of the ICB, which was responsible for commissioning the care being delivered to JP.
30. In analysing the delay that has occurred, the ICB acknowledges that JP’s case should have been identified and referred to the Court of Protection sooner. They have apologised for their part in that delay. It is important that I record their response:
“Avoiding delays of this nature in the future
6. The ICB recognises that as a commissioner of care, it must give active consideration to whether 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,’ as stated in XR. NHS CHC reviews are conducted on at least annual basis per the national framework, and the ICB did review [JP] annually during this period save for one year during the pandemic. The ICB has reflected on the lessons in [JP]’s sad case, and recognises the need to be proactive in exploring if there are other patients within the South East London population living in similar circumstances. The ICB will, as a priority, work with system partners across to identify and review patients on a case-by-case basis to determine whether care of this nature is agreed to be in the patient’s best interests, or agreed not to be in the patient’s best interests, or whether there is a need for the Court of Protection to determine any relevant dispute. The ICB is conscious that this would be needed both for patients in a hospital setting and for those patients who may be residing in nursing homes or in the community.
7. Since its formation in July 2022, the ICB has worked on developing the governance, escalation and oversight mechanisms for complex and high-risk patients that the ICB funds care for. This includes any patient where there is an element of safeguarding concern or mental capacity that should be considered. There is currently a suite of refreshed policies and procedures (most likely the Clinical Quality Assurance and Safety framework and protocols) going through the ICB internal governance processes to ensure greater alignment and standardisation across the ICB.
8. The ICB is aware that some of its system partners have already taken proactive action in relation to the identification and review of any patient who may lack capacity based on profound brain injury and prolonged disorders of consciousness. The ICB will continue to collaborate and assure that this work has been undertaken using a consistent approach across South East London.
9. Following the escalation of [JP]’s case to the ICB’s Chief Nursing Officer we will also be undertaking An After Action Review to identify areas of improvement and gaps in policy, procedure and approach across the system and the wider regional health economy that will need to be addressed.
10 The ICB anticipates that relevant training based on its findings will be delivered to all partners across the South East London System.”
31. I have re-read these passages several times. I should very much have preferred plain language, an unambiguous recognition of the extent of the delay, and acknowledgment of the avoidable pain caused to the family by it. I am prepared, however, to take the assurance that “there is currently a suite of refreshed policies and procedures (most likely the Clinical Quality Assurance and Safety framework and protocols) going through the ICB internal governance processes to ensure greater alignment and standardisation across the ICB” as an expression of a real determination to ensure that the ICB will not in future be a “passive bystander”, to use Theis J’s apposite phrase. The obligation is to be a proactive participant in promoting the patient’s best interests. I note, as has the Official Solicitor, that the review of the ICB’s working practices would appear to be at a relatively early stage. For all the reasons set out, and which I am bound to say strike me as obvious, this review requires to be given priority. What has occurred with JP is entirely unacceptable.
32. Ms Paterson submits that in deferring their obligations to the RHN, the ICB may have leant too heavily on the status of the RHN as an internationally recognised centre for neuro-rehabilitation. I have some sympathy with that but, to use the famous aphorism of human fallibility, ‘even Homer sometimes nods’. The checks and balances required to ensure that these crucially important decisions are taken effectively and timeously are predicated on robust collaborative relationships. The law relating to decisions to discontinue the provision of artificial nutrition and hydration in PDOC cases is now well settled. Neither is there any lack of clarity in ascertaining what procedural steps need to be taken by the parties, collectively to ensure that an application is ready for a hearing when one is required.
Recognising when cases need to go court
Hayden J, finally, reiterated the need to recognise when cases need to go court.
33. Ms Paterson has also highlighted what she describes as the RHN’s drift “into a well-meant attempt to mediate the family dispute about [JP]’s best interests, which resulted in yet further delay”. She makes the following submission:
“The Official Solicitor suggests that a clear signal needs to be sent through the judgment that there is no onus on either ICBs or healthcare providers to broker an agreement between family members, even if that would be desirable. The terms of section 4(6) of the Mental Capacity Act 2005 only place an obligation on a decision-maker to take “reasonable” steps to “ascertain” P’s wishes and feelings; and, s4(7), to “take into account, if it is practicable and appropriate to consult them, the views of anyone engaged in caring for the person or interested in his welfare”. In light of this, in the present case, it would have been better to file an application, once the immediate family had been consulted and the family tree obtained from [TP]. That said, the need for an application definitely crystallised once either the RHN and/or the ICB had been met with the absence of a response from a family member(s) as there was then “a lack of agreement as to a proposed cause of action” in relation to “the provision of life-sustaining treatment.”
34, I would endorse this submission. There is no onus on the ICB or healthcare providers to broker an agreement between family members. Ms Paterson moots that it might be desirable if there were. On that point, I take a stronger view. That approach risks occluding the nature of the enquiry, which as I have been at pains to identify, is directed towards understanding what P’s wishes and feelings might have been in these circumstances. It is difficult to see how a disagreement amongst those consulted is capable of mediation. The question is ultimately a binary one: would P have been likely to prefer to remain artificially nourished and hydrated or would he have preferred it to be discontinued in circumstances where treatment was ascertainably futile. Mediation in these circumstances risks conflating the family’s views of best interests with the authentic views of P himself.
35. Perhaps the loudest signal emerging from this troubling raft of cases is a failure to understand the crucial significance of issuing proceedings promptly. The Official Solicitor suggests that it is better for an application to be filed early, with an accompanying report by a General Practitioner and, if necessary, stayed for a short period while a second opinion from a Consultant in Neuro-rehabilitation is obtained. The reasoning underpinning this is to ensure the Court is seized of P’s best interests as early as possible. Equally importantly, P’s voice will be given the priority it requires by the provision of representation that this would confer. This, it is said, ensures that “in effect, the court proceedings and the ICB’s and/or the healthcare providers’ compliance with the guidelines can be progressed in tandem, but P’s best interests remain at the forefront of any “time-tabling”.” I find this an attractive submission, but I would not wish to be quite as prescriptive. It seems to me that the spirit of this could or ought easily to facilitate a timely application with both the General Practitioner report and one from a Consultant in Neuro-rehabilitation.
Comment
The systemic problems identified by Hayden J in relation to people in PDOC outside facilities such as the RHN are very challenging. The RHN has been the subject of repeated criticism before the Court of Protection because it has recognised its previous failings in best interests decision-making and brought cases to court in consequence (and hence Hayden J was at pains to seek to emphasise that, despite these failings, the actual care being delivered by the staff there is of very high quality). What are much more concerning, arguably, are all the cases in facilities where no-one has even recognised that there may be an issue. Hence the importance of ICBs recognising their strategic responsibilities for securing good governance as regards best interests decision-making.
Hayden J’s observations on s.4(7) are striking, and go beyond Lady Hale’s observations in Aintree (at paragraph 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. (emphasis added)
Whilst it is undoubtedly correct that the primary purpose of consulting with family (and – very often just as, if not more, importantly, friends) is to understand what the person themselves might have wanted, it is arguably to go too far to say that their views of what the right outcome is are irrelevant. For better or worse, the best interests jurisdiction of the Court of Protection remains a jurisdiction where the decision is ultimately intended to be an ‘objective’ one, rather than one of a pure exercise in substituted judgment – that must mean that it is legitimate to take account of the family’s views as part of considering all the relevant circumstances (as is required by s.4(2).
Finally, in relation to the (very) vexed question of when to go to court, it is undoubtedly the case that treating bodies should not pursue what might well be seen as a rotten compromise[1] for the sake of satisfying others at the expense of P, and, as Cobb J has previously identified, the perfect can be the enemy of the good in terms of preparing material for consideration by the court. But it is perhaps important that Hayden J did not descend to prescription in the way invited to by the Official Solicitor, as that could equally well lead to situations where the court simply does not have the material before it to make the relevant decision, and the clinicians have become so embroiled in the court process that they are not able to do the work that is required of them under the PDOC guidelines. Arguably of much greater importance is that clinicians recognise at an early stage that they are in a situation which may need to go to court, so that they can start the twin-tracking of working with the relevant lawyers to prepare the application, whilst at the same continuing the necessary diagnostic and prognostic testing.
[1] A phrase for which I thank Jordan Parsons, who is doing some very interesting thinking in this area.
