The flipside of the intense focus on the wishes, feelings, beliefs and values of the person required by s.4 MCA 2005, as clarified by the Supreme Court in Aintree v James, is that there may be situations in which, objectively, a person’s medical situation might appear hopeless, but nonetheless continued treatment is in their best interests. Such a case is that of The Hillingdon Hospitals NHS Foundation Trust v YD & Ors (Refusal of Withdrawal of Treatment) [2025] EWCOP 31.[1] On the face of it, YD, who had been in a prolonged disorder of consciousness since October 2024 and had no prospect of emerging from the permanent vegetative state in which he now found himself, was a clear candidate for withdrawal of clinically assisted nutrition and hydration.
But the hospital caring for him, and the ICB commissioning his care, did not assert that continuing CANH was clinically inappropriate. Had they done so, then the Court of Protection could have probed their reasoning, but could not have required it to be continued. The question, therefore, was what was in YD’s best interests.
One striking point about this case was that YD had not one, but two, partners, who had previously unknown to each other. Each of them, though, were:
73. […] aware, without knowing names or numbers that YD was ‘a central part of a community of people with shared beliefs that there was more to life than the material, and…that there are more things in heaven and earth that are dreamt of in the philosophy of NHS treatment. They had a shared belief that each person has psychic abilities but not every person can access them.’ They each had an experience of YD that was not scientifically explicable and all explained that understanding the universe outside the material and ‘exploring and developing his own transcendental powers, was [YD’s] life’s work’. NT emphasised the serious nature of YD’s scholarship in this regard. [and that] YD ‘believed that one’s spiritual belief system is a personal matter and one of continuous development’. YD believed in ‘self-improvement, giving thanks and doing good…that we have multi-dimensional existence outside linear time and he reported that he experienced that existence when asleep and unconscious. He believed we can communicate thoughts in an extrasensory way and his beliefs were manifest in waking life personal experiences. He believed in life after death’.
The Vice-President of the Court of Protection, Theis J, in reaching her conclusion reasoned as follows:
79. When considering what is in YD’s best interests it should be considered in its widest sense. Consideration must be given to all relevant circumstances, to the person’s past and present wishes and feelings, to the beliefs and values that would be likely to influence their decision if they had capacity, and to the other facts that they would be likely to consider if they were able to do so (s4(6) MCA 2005). Account must be taken of the views of anyone engaged in caring for the person or interested in their welfare (s4(7) MCA 2005). In considering whether treatment is in the best interests of the person concerned, the decision-maker must not be motivated by a desire to bring about the person’s death (s4(5) MCA 2005).
80. The focus must be on whether it is in YD’s best interests to continue to have the treatment, rather than whether it is in his best interests to withhold or withdraw it. The purpose of the best interests test is to consider matters from the patient’s point of view, however that does not mean they are determinative.
81. The medical evidence from Dr N and Dr Hanrahan unite in their conclusion that YD is in a PDOC. They both conclude he is in a VS in accordance with the assessments that have been undertaken following the RCP Guidelines. They were each firm in their evidence about the diagnosis and the prognosis. Each were pressed by Mr Hockton about the relatively small changes that had been noted by JG and MB since June, some of which is noted in the nursing records, including by the OT. They did not dispute what JG and MB saw, or what was recorded, but attached no evidential significance to it regarding diagnosis as it lacked the consistency over a period of time and the other features as set out in the RCP Guidelines to be of significance. In his written report Dr Hanrahan stated that when considering the burdens of continuing with CANH there does not appear to be great ‘burdensomeness evident’.That accords with the medical evidence of YD’s relatively stability, he has not suffered from infections. Whilst Dr Hanrahan stated that in broad terms by virtue of his current condition the trajectory is he would continue to deteriorate, however he did not detract from the view set out in his report due to the high quality of care, both medical and from the family, that he is receiving. The evidence about pain is equivocal. There is evidence of YD grimacing whilst his limbs are being stretched and both JG and MB describing being aware when it appears he is in discomfort.
82. I agree with the Official Solicitor that the court now has a rounded picture of the values and beliefs that would be likely to influence YD’s decision if he had capacity. I reject any suggestion that JG, MB or NT sought to bring their values, beliefs, wishes and feelings over those of YD, or risked conflating them. They each gave compelling evidence with dignity and composure and maintained the clear blue line between what they felt and their evidence about YD’s values, beliefs, wishes and feelings. This is despite their obvious deep affection for YD. They were each able to bring their own perspective of YD’s beliefs and values. I reject the submission on behalf of the Trust that the evidence ‘did not provide a direct answer to the question of what [YD] would have wanted to do in these specific, extreme circumstances’.In my judgment, that is considering YD’s best interests through too narrow a lens. If there is no evidence of such a conversation the court needs to carefully look at the relevant evidence as a whole, evaluate it and see what, if any, conclusions can reliably be drawn.
83. What has been so striking about the evidence about YD from JG, MB and NT is that, certainly in relation to JG and MB, even though they had each known YD for 20 and 24 years respectively, they had not known each other prior to October 2024, and were unaware of each other’s existence. Yet despite that separation over such an extended period of time they were each able to independently confirm many common features about YD’s wishes and beliefs. In particular, regarding the depth of his interest in the spiritual world and his limitless curiosity about such matters that he held strong beliefs about. YD has long held beliefs about the healing power of the mind, body and soul and to understand and, if required, push established boundaries based on his learning and understanding. From their descriptions YD was compassionate, private person who was a fiercely independent thinker about a wide range of issues, in particular regarding the spiritual world and healing.
84. I agree with the Official Solicitor that the evidence establishes that whilst YD ‘might not dispute Dr Hanrahan’s opinion that recent physical changes are the manifestation of involuntary, rudimentary new connections to the brainstem, he would be likely to see that opinion as a limited and incomplete explanation of what had caused those changes’.His long standing interest in the healing power of the mind, spirit or soul would very likely be values that would inform his decision if he had capacity. The changes that have been observed he would regard as positive signs and that he had the potential to make further changes. These are likely to be relevant factors that would inform his decision if he had capacity, and would be likely to be a factor in him wishing and feeling that he wanted to continue to be provided with CANH. YD would also likely factor in, due to his long standing beliefs in such matters, that others believe they are in communication with him.
85. When looking at what evidence the court has about what decisions he has made in the past, the understanding of what VS is and the medical prognosis by Dr N and Dr Hanrahan it is unlikely to have caused YD to wish or feel that CANH should be withdrawn. When considering the evidence about the past YD is likely to value the devotion shown by JG and MB. Their evidence when asked about how YD would feel about the amount of nursing care he requires, bearing in mind the evidence about what a private person he was, was powerful, as they each responded that YD would take it as part of the process of getting better or healing. They both described YD’s high threshold for experiencing pain or discomfort in the past. This is consistent with his actions in the past (for example seeking the assistance of the NHS when he chose to) and his wider views of the holistic healing process. I agree with Mr Hockton, that from the evidence the court has about YD he would have approached the decision-making in this case in a very different way from Dr N and Dr Hanrahan.
86. Having stood back and considered through a wide best interests lens whether it is in YD’s best interests to continue to receive CANH I have reached the conclusion that it is.
87. In my judgment the burdens do not outweigh the benefits. I have carefully considered each of the burdens it is said continuing with that treatment would involve for YD, both in the short and the long term, but I have to balance that with the benefits of such treatment continuing. Most importantly it would preserve his life. I depart from the evidence of Dr N and Dr Hanrahan as in the particular circumstances of this case I place greater weight on YD’s past and present wishes, feelings, beliefs and values than they do. I accept the picture of YD painted by the evidence of JG, MB and NT. I do not regard the continuance of CANH in this case as futile where it sustains life. Having looked at the wider evidential picture I do not accept the narrow view taken by Dr Hanrahan as it did not pay sufficient regard to the evidence of YD’s beliefs and values and wishes and feelings. Whilst it is recognised that any awareness on the part of YD, if present, is extremely limited and there may be little or no further improvement and a trajectory of general deterioration it is far from clear that in the circumstances YD is in he would regard his continued existence as a burden. There is a strong presumption in favour of preserving life which, in my judgment, having carefully evaluated the evidence in this unusual case, the Trust has not discharged.
Returning to an issue which has troubled her for some time, Theis J also made some wider observations about the role of ICBs:
88. The focus of this judgment has been on YD. It is right that during the evidence the wider issue of the impact of cases such as this was raised. The Trust acknowledge there is scope for further work in relation to the timing of applications of this nature: on the one hand, there is a well-recognised need to bring cases of this kind promptly if treatment is not regarded as being in P’s best interests, but on the other hand, there is the risk of unintended consequences if this leads to patients having prolonged admissions to acute neurorehabilitation beds versus a community placement. There has been no suggestion in this case that the Trust delayed in making this application.
89. The issues raised are (i) whether the ICB should be a party to proceedings of this nature, or (ii) whether the ICB’s engagement in matters (without party status; as occurred in this case) satisfies their need to be actively involved in withdrawal decision, and (iii) whether patients should, where possible, be placed in community beds, pending the outcome of an application.
90. The Official Solicitor considers there is a lack of clarity in this case whether Dr N considered that YD should have been transferred to a nursing home some time ago and court proceedings initiated whilst he was there, or that he would not stand in the way of YD’s CANH continuing so long as it did so at a nursing home not at the rehabilitation unit.
91. It is clear that on a case by case basis these issues should be proactively and carefully considered at each stage, full disclosure must be made of any such concerns or considerations raised so that the Official Solicitor and the Court are fully appraised of the issues. The relevant ICBs should take a proactive interest in any such issues, taking such steps as are required to avoid delay and making sure all relevant parties are represented in any court proceedings and, if required, urgent directions sought from the court in any ongoing proceedings.
92. None of these observations detract from the very clear message in cases such as NHS South East London Integrated Care Board v JP and others[2025] EWCOP 8 and NHS North Central London Integrated care Board v Royal Hospital for Neuro-Disability & XR [2024] EWCOP 66 about the need for effective decision making structures being in place for those who are in a PDOC, the need for careful and regular review and evaluation about what is in their best interests and, where required, an application being made to the Court of Protection for a decision as to what is in the patient’s best interests.
Comment
The full judgment requires reading for confirmation that real life is, as ever, stranger than fiction, and also as a case study in the navigation of complex relationships going beyond ‘next of kin’ to identify those who were expert in the person. It is also good to see that this was a case in which the case was brought with appropriate speed before the court for resolution of the question of whether continuing CANH was in YD’s best interests.
This case is another in the number of small but increasing number of cases (including Aintree v James at first instance[2]) in which the Court of Protection has upheld a patient’s understood wish for continued treatment in the face of medical concern as to whether it is in their best interests. This is immensely important – constructing the right decision for the person must include the potential for that decision to be to continue as well as for it to stop.
However, such an approach comes with consequences. As Rosalind English has also pointed out in her comment about the case, the maintenance of patients in the position of YD is, however, not cost-free. Just as in the case of admission and treatment in ICU, we tend to seek to avoid hard discussions about cost-benefit analysis of the sort that are now familiar in the context, say, of cancer drugs. For my part, I would suggest that there is an increasing need for work to be done to establish a framework within discussions about such costs can be considered in a transparent fashion, and in a way which resolves the uncertainty justly. Otherwise, we run the risk of concerns about costs leading (no doubt inadvertently) to: (1) distortion of the clinical framing of the person’s condition and of the treatment; or (2) distortion of best interests decision making (for instance, by asking whether the person would wish to be continue to be kept alive at the cost of “diverting” resources from others).
[1] In passing, I do wish more judges would do as was done here, and give a ‘headline’ in the title. Even if it does not need to be a spoiler, as here, it makes life so much easier when trying to keep track of the alphabet soup of case names.
[2] Mr James had died by the time the case reached the Supreme Court so technically the decision of the Supreme Court does not count.
