A patient with “unusual” spiritual beliefs: Is withdrawing a feeding tube in his best interests?

By Jenny Kitzinger, 8^th August 2025

12th August 2025: The judgment has just been published (click on the case name): The Hillingdon Hospitals NHS Foundation Trust v YD & Others (Refusal of Withdrawal of Treatment) [2025] EWCOP 31 (T3). Jenny has written a commentary on the judgment (also covering media reception of it) here: “Commentary on Re YD (Refusal of Withdrawal of Treatment) [2025] EWCOP 31 (T3)”

As someone with both an academic research interest in coma and prolonged disorders of consciousness [PDoC] and with family experience in this area, I’ve watched and published about many Court of Protection hearings dealing with continuation or discontinuation of life-sustaining treatment for such patients.^[1] But this is the first case I’ve seen which has included consideration of messages conveyed via a spiritual medium about the wishes and feelings of a PDoC patient.

It was very interesting to observe how the court handled this aspect of the case in attempting to grapple with what the patient might want now as part of the ”best interests” process.

The 60-year-old man at the centre of this case (“YD” are the court-assigned initials for him) suffered a stroke in early October 2024 and, following hospital treatment, he’s currently in a specialist rehabilitation unit. Both the treating clinician and the independent expert diagnose him as being in a vegetative state, i.e. unaware of himself and his environment. They think there is very little prospect of any neurological change. In their view, clinically assisted nutrition and hydration (CANH) is no longer in his best interests.

His friends and family disagree: they believe he is conscious and may still improve, and they are confident that he would want CANH to continue so that he can try to “heal himself”. As one of YD’s partners said” “YD always says he is going to live a very long life and that he values life. YD does not believe in giving up and would see this through to the end. He wouldn’t want his life taken before he was ready. He hasn’t chosen to give up on life yet”.

The hearing (COP 20017687) was before the Vice President of the Court of Protection, Mrs Justice Theis, sitting at the Royal Courts of Justice on Monday 4^th August 2025. I was watching it remotely, but all the parties were in the physical courtroom: only one witness (a treating doctor) provided evidence online.

The case was brought by the Trust (represented by Eloise Power) as an application to the court to determine that continuing clinically assisted nutrition and hydration (CANH) was not in YD’s best interests, and to approve a terminal care plan.

The Official Solicitor, acting as the litigation friend for YD (Katie Gollop) reserved her position until after hearing the evidence.

The second and third respondents were the patient’s two partners JG and MB. These two women had been YD’s partners for 20 and 24 years respectively, but without previously knowing of each others’ existence. They had met each other only after YD’s catastrophic brain injury. They are now supporting each other, and often visit him together. They have very similar views of what YD was like as a person and what medical treatment he would want. They were jointly represented (pro bono, i.e. for free) by Andrew Hockton, and they oppose the application.[^2]

The witnesses in court (in the order they gave evidence) were:

• Treating clinician: Dr N (a rehabilitation consultant)
• Independent expert: Dr Andrew Hanrahan, the Lead Consultant for the Brain Injury Service at the Royal Hospital for Neuro-disability, Putney, specialising in neurological rehabilitation and neuro-palliative management of complex neurological disabilities and disorders of consciousness.
• The patient’s two partners: JG and MB
• A close friend of the patient: Mr T

This blog has three sections. First, I address YD’s diagnosis and prognosis and the evidence from the medical experts. Second, I explore YD’s values, beliefs, wishes and feelings, as represented in evidence from his family and friends. Third and finally, I discuss the parties’ closing statements. This included a rather surprising twist in that operational issues in relation to patient care were highlighted – in particular regarding when patients might move from specialist neuro-rehabilitation centres to nursing/care homes – especially when disputes about best interests might be involved – and the interplay between NHS Trusts (which provide services) and Integrated Care Board [ICBs] (which commission those services). No judgment has yet been handed down: a link will be added from this blog post to the judgment when it’s available.

1. YD’s diagnosis and prognosis: Evidence from the medical experts

The doctor in charge of treating YD, Dr N, was called into the witness box first and the independent expert, Dr Hanrahan, was the final witness in the hearing. Both were questioned (for over an hour each) on whether all the appropriate tests and interventions had been done to establish the correct diagnosis and prognosis. Reference was made throughout to the Royal College of Physicians (RCP) 2020 guidelines on Prolonged Disorders of Consciousness

Such scrutiny is an important part of court hearings about PDoC patients, which often involve family members who feel more should be done in the face of clinicians who believe everything appropriate has already been tried (e.g. When another assessment is not needed: Best interests decision-making for a patient with a prolonged disorder of consciousness). In this case, one focus was on whether it would be useful to pursue another attempt at a lumbar puncture to rule out Normal Pressure Hydrocephalus. The independent expert, Dr Hanrahan, was clear there was no need for this. There was ample evidence of what was causing the disorder of consciousness (e.g. from the MRI scan).

The clinical experts were also asked whether there’d been appropriate consideration of behavioural evidence of consciousness. Systematic structured assessment of YD’s behaviours had been conducted in accordance with the RCP guidelines – using the Wessex Head Injury Scale and the Coma Recovery Scale revised (CRS-R) scores. These tests suggest a vegetative diagnosis. But both his partners think YD sometimes cooperates with treatment (e.g., opening his eyes for eyedrops or his mouth for mouthcare) and that he responds to them (e.g. squeezing a hand or looking at them). They’d submitted videos to the court (which the clinicians had watched, and the judge confirmed she’d looked at too) to demonstrate that YD was showing awareness of himself and his surroundings.

Both clinicians completely accepted that his partners might be the people most likely to observe any responsive behaviour, indicating consciousness. As the treating clinician commented:

Dr N: The family are extremely devoted. Both of them have been very verbal advocates for YD. They are there by his bedside without fail every evening. There is no reason to doubt their love and care for YD.

OS: There is some evidence they are quite attuned to YD?

Dr N: Yes. Patients respond better to people they know and family can pick up subtle cues that someone who has never seen [the patient] before and doesn’t know him may miss. With humility, I have to accept they may be better people to interpret his verbal and non-verbal cues.^[3]

However, both Dr N and Dr Hanrahan pointed to the difference between what was observed and how an observation might be interpreted. They suggested observations could be interpreted differently by a hopeful family member versus a clinically trained professional looking systematically for reproducibility and responses to specific stimuli. For example, Dr N, accepted that the patient does open his mouth and his eyes at times – and this might coincide with a request to do so for mouth or eye care – but systematic testing had failed to establish response to command. Under cross-questioning, Dr Hanrahan explained that he believed that a statement from one of YD’s partners to the effect that that YD had moved his leg while being changed to protect his modesty was her (mis)interpretation of a crossed spinal reflex, and not an intentional movement.

There was some detailed discussion of ‘visual fixation’ and what research shows about the significance this might or might not have for a VS diagnosis (apparently the national RCP guidelines on this might change in light of new research) – but, in any case, under cross-examination from the Trust’s barrister, Dr Hanrahan confirmed that in his view YD’s behaviours did not in fact meet the criteria for visual fixation: the description of his eyes drifting and stopping was different from the visual behaviour involved in seeking out an object or person of visual interest.

The clinicians acknowledged what the partners had reported observing (and also occasionally corroborative notes from an occupational therapist and a nurse, highlighted by the partners’ barrister). However, Dr Hanrahan confirmed these very occasional observations did not change his assessment of YD’s diagnosis or his prognosis informed by an overview of all the medical evidence and the systematic testing. Under cross-questioning Dr N seemed at one point to allow for the possibility of YD being in the borderline between VS and ‘MCS minus’, but he too came down on the side of a VS diagnosis on the balance of probabilities and did not see YD’s prognosis changing.

It’s common in hearings about PDoC patients, for family and clinicians to have different experience and understanding of the person’s behaviour. Other OJCOP blogs have explored this – including the way videos of the patient are used to document and support competing explanations (“Seeing is Believing? Patient Videos in Life-Sustaining Treatment Disputes”; “Use of videos in assessing consciousness: A clinical perspective”).

One feature of this case that reinforced the partners’ sense of hope and their conviction that YD was determined to improve was the fact that he is medically stable and that his movements are increasing and getting stronger. The (uncontested) observation of medical stability turned out to be used very differently by YD’s partners, and by the doctors.

For Dr Hanrahan, a shift towards more or stronger movements was not a surprising element of ‘change’ (he would not call it ‘improvement’): it was normal for vegetative patients to stabilise over time (though not always as well as YD). It is, Dr Hanrahan said, precisely because YD is medically stable that he can be very confident that he has the correct diagnosis and prognosis: “One of the hallmarks of assessing Disorders of Consciousness is you first have to medically optimise the patient. YD has been medically optimised and he is stable. I can’t invoke medical complications like infection or seizures to say there might be some awareness lurking somewhere, that he has hidden covert consciousness. The medical stability has given us a more valid diagnosis.“

Notably, though, Dr Hanrahan did not take YD’s medical stability for granted: he emphasised that it was dependent on multiple nursing and medical interventions –and was unlikely to be sustained indefinitely. Dr Hanrahan was uncompromising in how he presented YD’s future: “The diagnosis is stark. I cannot think of any prospect of recovery. All that remains is opportunity to deteriorate – and he will: he’ll aspirate or get an infection and that will be a distressing situation to manage and it will happen, on the balance of probabilities, in the next weeks or months. There will likely be neurological deterioration too. […] What we have here is chronic permanent severe brain failure.“

Dr Hanrahan went on to state his view that: “The YD I’ve been given to see with the narrative of family, that person has permanently departed […] What makes YD, YD has gone.”

2. YD’s values, beliefs, wishes and feelings, and evidence from his family and friends

This issue of who YD was and/or is now as a person – and what constitutes his personhood – was the key focus for the other parts of the hearing. Testimony from, and cross-questioning of, three people close to YD (his two partners and one of his closest friends) focused on YD’s own perspective (and his partners’/friend’s) on consciousness, the specific “values and beliefs” expressed by the patient in the past, and what he might want in his current situation. I’ll present each in turn.

2.1 Evidence from JG (Partner)

JG was the partner who gave evidence first. She has been with YD for 20 years and described him as: “humorous, determined, unique, and very supportive…He loves to learn and he looks outside himself – into the universe or even beyond, about why things are the way they are.”

It was noticeable that none of the witnesses who knew YD before his injury hesitated to describe him in the present tense. This contrasts with previous hearings I’ve watched where friends and relatives occasionally stumble over the use of tense, perhaps saying ‘he was…’ and ‘correcting’ themselves to ‘is’ (or vice versa).

YD has not ‘departed’ as far as JG is concerned. She has a clear sense of connection with him at a “spirit level”, including through dreams in which “he would get up and talk or walk […] He was healthy in my dreams, but it was- MB was there, so it wasn’t a memory, if that makes sense: it was a future.” I found this very moving testimony – it reminded me of how, in the first year or so after my sister’s car crash, I had vivid and repeated dreams in which she appeared completely healthy and well (although, unlike JG, I did not experience these as spirit connection or visions of the future – so found them quite distressing once I awoke).

JG’s spiritual beliefs are a key element of her approach to the current situation and are core to her relationship with, and understanding of, YD. She talked about his long-standing engagement with spiritual mediums, ability for astral travel and explained “He is an empath – can feel the energy of people around him.” The significance of a particular spiritual medium became clear at this point.^[4]

Mr Hockton (counsel for the family): You say both you and MB (other partner) strongly believe he can communicate his thoughts to you through a medium that he’s known for 6 years. And you’ve provided WhatsApp messages of YD’s thoughts since January this year.

JG: Correct

Mr Hockton: […]. They include messages which you take seriously and understand to be communications through the medium with YD. They include observations such as, taking a few at random, “he said to tell you that, whatever has been said, he’ll prove them wrong”.

Asked how she interpreted this message, JG explained it confirmed her belief that“he’ll work on healing himself and do more than they think he can do”. She also said the first messages from the medium made her happy because it let her “know he was present and knows who we are […]” and also “because it was in his vernacular, the words he would use, the way he would talk. And it was a period of time he couldn’t talk”.

Again, I found this testimony particularly moving because it reflected my own experience when my sister was in intensive care, and I suddenly remembered that there was a lovely birthday message from her on the cassette of my old answer phone (this was back in 2009). I still recall the urgency with which I rushed home to take out the cassette before it might be recorded over. Sixteen years on I still occasionally play the message (now safely digitised).

In addition to describing YD prior to his injury, JG talked a lot about her experience of him now – including movements she saw him make and the ways in which she thought he sometimes responded to her. It was clear she was very attentive, noticing every small change in him (including the more frequent and stronger movements over the past couple of months): “he’s done more in the past two months than in the eight months previously. If he had six months more, who knows where he could be“.

She was confident about YD’s conscious engagement with his own healing and drew a conceptual distinction between mind and brain – “I feel his mind is more intact than the health of his brain so he would still be able to communicate with us”. Asked by counsel for the Trust whether perhaps she was “desperate to see things” and therefore might misinterpret what was going on, she rejected this assertively: “No, I see what I see and I feel what I feel“.

JG (along with YD’s other partner, MB) is involved in YD’s physical care and spends hours at the bedside. She has noted specifics such as, for example, that he “opens his right eye wide if he has a problem going to the toilet.” She saw this as a form of communication: “On one occasion we checked his catheter and it was blocked with sediment and his heart rate had gone up quite high…once the blockage was removed he was able to relax. So he’s able to communicate in that way that there is an issue that needs to be resolved“.

She was supported in her thinking about appropriate care by the Reike practitioner that she (and/or MD) employs to give ‘distance Reike’ (explained here: https://www.reikifed.co.uk/reiki-distance-healing/). “The Reike practitioner connects with him on an energetic level even though she’s not physically around him and she can pick up any areas of his body where he’d like energy directed to help him heal or relax.” This Reike master had noted, for example that “His throat chakra was showing red”. This was even though, before the Reike session, “she didn’t know he’d had a problem with his throat” and “I agreed and he’d had a lot of suctioning and he didn’t want anyone to put anything else down his throat. We stopped suctioning him that deeply to give his throat a chance to heal“.

JG’s conclusion based on what she knew about YD (both before and since his brain injury) was that: “he refuses to give up on his life and wants to continue living as long as he is able to. My conviction is that [YD] has not given up on himself … he wants to continue living and try to improve however small, until he passes away in a natural and unforced way”.

Asked by the OS whether her current involvement in YD’s life would be sustainable if he was to go to a nursing home and live for years, JG was adamant: “I will do whatever I can if he needs me to improve. Or just to be with him so he knows I love him. There’s not really a question of my not being there…”.

2.2 Evidence from MB (Partner)

MB has been in a relationship with YD for 24 years. She was weeping as she took the stand but soon composed herself with the support of the court and once she started talking about YD – who she described as “very strong, very determined” and someone who “fights with everything he has”.

Asked how often she visits him, she said on a daily basis for around six hours (sometimes more) each time. She was convinced that her partner was not in a vegetative state: “He IS aware. I’d sometimes come in after JG and give him a kiss on his cheek and he’d open his eyes immediately to see who is kissing him”.

Like JG, the key message that MB took from the communications with YD via the medium was that YD “is trying to heal himself and he would like the opportunity to do so”. She explained that: “to stop feeding him and to stop his water – that would stop him from doing what he is trying to do. He would want to go when he was ready to give up and go and not before“.

Her evidence was very similar to JG’s, but she added descriptions of incidents that highlighted YD’s high pain threshold and his views about end-of-life care. She’d had a conversation with him about palliative care and syringe pumps:“he would say unless the person is physically suffering and the body shows signs of deterioration. the body should go when it’s ready to go”.

Both women were questioned about possible other interpretations of YD’s values and spirituality. For example, they were asked to respond to suggestions that his being a very private man might make the current assault on his physical privacy a burden, that his belief in holistic medicine might lead him to reject clinically assisted nutrition and hydration, and that his spirituality might make him happy to now detach from his physical body. Neither accepted such alternative interpretations.

Like JG, MB was committed to continuing to be at YD’s side. When asked if there was anything else she wanted to tell the judge she simply said: “He’s trying. Please give him a chance and opportunity to show that. And not end his life at the moment. Maybe later on when he does show signs of deterioration and he’s giving up. But he’s not at the moment“.

2.3 Evidence from Mr T (Friend)

Mr T gave evidence on the basis of his knowledge of YD as a colleague and friend. Like the two partners, he described YD’s charisma: he was a “unique, driven, determined individual – I’ve never met anyone in my life like YD”. Like them, he talked about YD’s spirituality, and his quest for knowledge through reading. He showed a new dimension to YD by describing how YD supported him in caring for his mother with severe dementia, and how YD emphasised the importance of not taking away her dignity. He had come to the same conclusion as YD’s partners about what YD would want in his current situation and he stated about his friend’s future: “I know as long as those two women are there, he’ll have his dignity.”

In combination, these witnesses conveyed a very strong (and consistent) sense of YD’s distinctive values, wishes, beliefs and feelings.

The reported beliefs of YD were also shared by the witnesses themselves to a great extent. Trying to separate out the wishes of family/friends from the potential wishes of a protected party can sometimes be challenging. In this case the shared spiritual beliefs if anything made me more confident in the way these witnesses thought about what YD might have wanted as they had a rounded view of how these beliefs might apply in a range of circumstances. My feelings about this were reinforced partly because of the power dynamics. It seemed clear that YD was a ‘charismatic’ person, much loved and admired by the witnesses who were all younger than him and, in each case, he had mentored, influenced and nurtured the belief systems of the witnesses (rather than the other way). Having listened to what they had to say, I believe that if YD had been able to sit up and hear from the doctors about his situation, he would indeed have taken the approach his family and friends said he would.

3. Closing submissions and my reflections

The judge invited written closing submissions for the following day, keeping open the possibility of a hearing, if necessary, at 2pm that afternoon. In the event the hearing was vacated, but on request (approved by the judge), the barristers all shared their closing submissions with observers.

The family and the OS took the position that continuing treatment was in the patient’s best interests. The Trust said it was not. The closing submissions emphasised key points from each parties’ opening submissions, and highlighted diverse elements of the oral evidence, sometimes (not surprisingly) with different emphasis and to different ends.

Each final statement also highlighted some of the relevant legal framework. The position statement on behalf of YD’s partners, for example, draws attention to the case of Aintree University Hospital NHS Foundation Trust v James [2013] UKSC67 on the importance of considering the matter from the patient’s point of view. It also refers to the recent decision in Re PK [2025] EWCOP 17 (T3), a case before McKendrick J in which the judge made a decision (to continue treatment) contrary to the best interests formulations advanced by two experienced clinical witnesses, including the single joint expert, Dr Hanrahan (who was also the expert in this case). The statement from the OS also extensively addresses YD’s belief system and the elements that meet the Grainger criteria (Grainger plc v Nicholson [2010] IRLR 4) and hence qualify as a philosophical belief protected under the UK’s Equality Act.

For me, though, the most interesting element of the closing submissions was the way in which the OS has responded to some of the oral evidence about operational issues highlighted by the two expert clinical witnesses.

I’ve done a lot of research on the ways in which PDoC patients are cared for, and specially on the procedures for making best interests decisions about life-sustaining treatment (see cdoc.org.uk). For well over a decade, I’ve also been supporting families facing catastrophic brain injury at different points in their ‘journey’ through the system. These families have represented a range of views about the right outcome for their loved one in relation to CANH. My experience of supporting these families has informed the development of online training for healthcare professionals (cdoctraining.org.uk), as well as work I’ve done with organisations to improve their processes.

As anyone who researches or works in this field knows, all aspects of PDoC patient pathways are informed by a complex network of factors including legal frameworks, NHS funding and healthcare delivery structures, and other matters ranging from the role of personal injury compensation claims to the organisation of (mostly private) nursing/care homes. Improving the interface between these different players/forces is key to delivering on patients’ best interests even if this not at the forefront of ‘best interests’ discussions for individuals.

There were two occasions during this hearing when each of the doctors seemed to go ‘off piste’ and aspects of this broader context came to the fore. I recognised on each occasion a common frustration I hear from clinicians in this field about the operational challenges involved in caring for PDoC patients, and in attempting to ensure the right pathway for them through different services, and to protect their best interests. I refer to the comments as ‘off piste’ in the setting of this Court of Protection hearing in so far as, arguably, the points being made were not directly relevant to YD’s best interests as an individual – although of course they provide important context.

Under cross-questioning from the OS (her question was actually about the relationship between YD’s partners and the treating team), the treating clinician volunteered information about his own position on bringing the case to court. He said that MB had lately been somewhat “frosty” with him, saying “why couldn’t you just let him go to a nursing home and just let him have a natural end. And part of me sympathises with her”. He expanded, without prompting, to say that he “would have avoided [the court case] if at all possible” and then explained why he felt he had to make the application.

Dr N: Use of our beds for patients who are not evolving rapidly is not a good use of the beds. […] we have a highly skilled & multi-disciplinary team and the aim is to support patients to return to some form of independence. We only have one or two patients in PDoC because we believe these beds must be used by patients for an assessment period, and then to be moved to nursing homes or homes. These sorts of assessments and deliberations that take months [I think he meant in finely balanced or disputed best interest cases that need to go to court] should not be taking place in acute beds. So when MB asked “why don’t you just move him into a nursing home” – I think moving him to a nursing home would have probably been the right thing to do.

Under re-examination by counsel for the Trust, his attention was drawn to the fact that in answer to Ms Gollop’s question “you spoke of the use of beds in your unit”. Counsel asked, “What is the purpose of your unit?”

Dr N: We’re a neurological rehabilitation unit. Most of our patients are able to interact with their environment and engage with physiotherapy, speech and language therapy, occupational therapy etc. But because of our experience we do take PDOC patients with the intention to see if they will, with time, emerge and benefit from interventions. Some do – within a month or 6 weeks from intensive care…they change and improve and go from VS to MCS and then they emerge. Unfortunately, YD has not. That is where our interpretation of the MCA means we are duty bound to ask what is in his best interests, and if necessary to ask that question of the court [is it right to continue with CANH]. If we send a patient to a nursing home, then years down the line it come to the attention of court, we will have been failing in our duty and we are criticised for negligence. But the process of doing the assessment and taking a case to court blocks a bed and is an enormous burden on our resources. We are doing the right thing, but it is not an easy choice for us to make.

The challenge Dr N faced was palpable.

On the one hand, sidestepping a court case by accepting the family’s view of best interests and simply moving YD to a nursing home as his family and friends wanted could have been the “right thing to do” in terms of allowing family views of best interests to prevail and freeing up a bed for other patients, but realistically that course of action might not be in his best interests and, in addition, might risk YD being left there without any ongoing expert reassessment of his best interests – once a patient has left specialist care, feeding tubes are often continued by default. (We have supported families where PDoC patients have been left without any review of their best interests in relation to CANH for decades (e.g Kitzinger J & Kitzinger C. (2017) Why futile and unwanted treatment continues for some PVS patients (and what to do about it) International Journal of Mental Health and Capacity Law. pp129-143)

On the other hand, ensuring that YD’s (contested) best interests are fully examined while he is in a specialist unit under Dr N’s care is also “doing the right thing” (and compliant with RCP Guidance) – but has its own challenges and is an expensive option both financially and in relation to other resources.

So, Dr N had not taken the easy way out – but both options have problems. It is an operational problem that needs addressing.

Discussion strayed into broader operational issues for a second time in Dr Hanrahan’s cross examination. Again, it was prompted by direct questioning from counsel for the OS who asked “an open question”, saying that “it arises out of some of the evidence this morning”. She was interested in the effects of a particular judgment (https://www.judiciary.uk/wp-content/uploads/2025/02/NHS-South-East-London-Integrated-Care-Board-v-JP.pdf) on clinicians’ decision-making. She wanted to know whether Hayden’s decision in JP about the need to review patients in PDoC might have “stood in the way of doctors feeling empowered to transfer patients to a nursing home in accordance with the wishes of family and friends who wanted that, even if the doctors didn’t agree but didn’t feel strongly enough to oppose it.” This question prompted Dr Hanrahan to talk about the context and policies in his unit to ensure quality and timely best interests decision-making. He also highlighted the challenges of finding appropriate placements, the variation in practice across Integrated Care Boards, the fact that the NHS only allows for 180 days for assessment at specialist centres, and the “wretched form” (the NHS continuing health care Decision Support Tool) which is used to determine eligibility for funding – all of which can pose problems for patients in Prolonged Disorders of Consciousness and those who care for them. The OS responded by commenting that the response was ‘illuminating’, and then tried again to ask about the implications of the Hayden judgment to which Dr Hanrahan simply said he didn’t know enough case law. The OS then moved on to ask whether YD would be increased risk of pressure sores or infections if moved to a nursing home.

These responses from both Dr N and from Dr Hanrahan clearly raised concerns for the OS. In her final submission, the OS notes “It is understandable, if somewhat troubling, that Dr N, regards him [YD] as a bed blocker” – and goes on to emphasise that in a case like this, “neither the financial cost to the NHS nor the burden on the staff who will be providing YD’s care are in play”. Her statement then suggests that: “… both YD’s treating doctor, and the independent expert instructed within the proceedings, have had NHS resources in mind when providing evidence. It is rare for that to emerge as frankly as it has but perhaps it is unrealistic to think that doctors treating patients who have suffered brain damage resulting in PDOC are unaffected, consciously or unconsciously, by their appreciation of consequences for other patients of continuing to provide an individual with a PDOC and high nursing and/or medical care need with CANH for what could be years.“

She adds: “The evidence about Dr N’s discussions with the Trust about YD, and Dr Hanrahan’s about system wide Trust/ICB negotiation about resource allocation for the few patients with PDOC whose continued treatment is in dispute, must have been upsetting for them to hear”.

I don’t know whether or not YD’s family members were upset by the extended discussion of resource and operational issues during the hearing – but it is certainly something that families with relatives in PDoC often become aware of. Operational/resource issues are a common part of the discussion among networks of PDoC patients’ relatives, and this issue comes up often in our research interviews. I personally lobbied for months to get my sister in a Prolonged Disorder of Consciousness out of a (more expensive) hospital bed into a (more appropriate) neuro-rehab placement. Later, after she ‘emerged’ from PDoC, I also lost a battle to keep her in a particular care setting that I thought best for her and from the outset the annual reviews using the (“wretched”) Decision Support Tool have been agonising and have not felt fit-for-purpose for her level and type of disability and needs.

Unlike the OS, however, I did not hear the clinicians’ comments as in any way suggesting that their decision-making was affected “consciously or unconsciously” by resource allocation issues per se, or that their decision-making was somehow being distorted because of the expense involved in “continuing to provide an individual with a PDOC and high nursing and/or medical care need with CANH for what could be years”. This is perhaps partly because I’ve heard some very similar discussion about operational issues and budget boundaries from clinicians (or service managers) who have a conscientious objection to ever withdrawing CANH from a stable PDoC patient and from one neuro-rehabilitation consultant who told me he would never initiate a referral to court if family objected (regardless of what he thought might have been the patient’s own wishes).

What I heard in what Dr N and Dr Hanrahan said in this hearing was an attempt to ensure that PDoC patients were in the right place, with the right assessment and funding to meet their needs, including the requirement for robust best interests decision-making – and (in the context of this particular case) that these principles had been brought to bear on YD as an individual. These doctors were talking about the context in which they struggle to try to do ‘the right thing’ not just the easiest thing – where the easiest thing could mean sidestepping a difficult conversation about a difference of opinion with a family and simply discharging a PDoC patient to a nursing home and getting them off the books.

The OS’s closing submission suggests that a working party could be useful and the Trust’s closing submission gave additional detail about the role of the ICB in this case and how the Trust had acted to try to avoid any delay in making a decision about YD’s best interests. The Trust also agreed that “there is scope for further work […] in relation to the timing of applications of this nature”.

It can be a ‘diversion’ but it can also very useful when system problems are highlighted in court hearings – I hope action will indeed be taken.

I understand that the judgment in relation to YD will be published next week (and a link will be posted here). My thoughts are with him, and his family and friends.

Jenny Kitzinger is co-director of the Coma & Disorders of Consciousness Research Centre, and Emeritus Professor at Cardiff University. She has developed an online training course on law and ethics around PDoC and is on X and BlueSky as @JennyKitzinger 

Footnotes

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[1] For a list of academic articles I’ve published in this area see: https://cdoc.org.uk/publications/academic-articles/. For a list of my blogs about PDoC cases see: https://cdoc.org.uk/blogs-about-court-cases/

[2] I’m grateful to have received opening and closing Position Statements from the barristers (all of whom are from Serjeants’ Inn Chambers): they have very much enhanced my understanding of this case.

[3] Quotes are as accurate as possible given that no audio recording is allowed. I’m grateful to Celia Kitzinger for cross-checking my quotes against her own notes from the hearing.

[4] The Official Solicitor’s opening position statement (on behalf of YD) comments that as far as the OS is aware this is the first time that “those interested in P’s welfare and who also care for him […] have adduced evidence of messages sent by a medium”. The Position Statement goes on to say: “The Official Solicitor suggests that the medium’s messages and the Reiki Master’s statement are admissible evidence. It assists the court with the context in which JG and MB’s evidence about YD’s present wishes should be evaluated and, potentially, it goes to their Art 8 rights which are engaged […] However, this is evidence of theirs, not YD’s”. Adding that “If the medium’s messages were being adduced solely as evidence that YD is sending messages, that evidence would probably be inadmissible because it is incapable of proof within the confines of the court process” (§16 and §19, Position Statement from OS). For more about medium communication with PDoC patients in disorders of consciousness see https://www.youtube.com/watch?v=2GNrGZK6_S4 and https://www.erinpavlina.com/blog/2018/02/can-a-medium-speak-to-a-person-in-a-coma/