“What is he saying to us?” The ‘voice’ of a hunger-striking man in a best interests decision about his medical treatment

By Gill Loomes-Quinn, 14th July 2021

During the afternoon of Tuesday 25th May 2021, I found myself back in the (virtual) Court of Protection for what was my first observation for several months.

I was expecting to observe the latest hearing in Case Number COP 1275114 Re RD (Emma Heron and Olwen Cockell had written about an earlier hearing in this case here) but was surprised to find myself observing a very different hearing.   The case of the man engaged in a hunger strike over his dispute with the Home Office as to the date of birth on his official documentation (reported by Celia Kitzinger and several others here) was back before Mr Justice Hayden. There was no explanation for the departure from the listings, but the facts of the case led me to assume (as was later confirmed in correspondence with one of the barristers involved in the proceedings) that the matter arising in the case was of an urgent nature. 

So, having logged onto MS Teams via the link I had been emailed that morning (7 minutes after sending my request to observe), I found myself adjusting my expectations rapidly and working out what was happening. It probably helped that the case had been covered on this blog before, and that its facts are particularly distinctive, so I deduced relatively quickly from the introduction of the parties provided by counsel for the applicant, and the introductory summary provided by Mr Justice Hayden (particularly valuable in this instance) that I was about to observe a further hearing concerning an asylum seeker (now with indefinite leave to remain in the UK) who suffered considerable trauma prior to arriving in the UK, is engaged in an ongoing dispute with the Home Office, and is on hunger strike in response to this dispute.   (You can read a summary of the original case concerning that came before the Court of Protection last July, and find a link to the published judgment resulting from those proceedings here).

Introduction to Proceedings

The hearing began with a summary of the case before the court. Counsel for the (applicant) Local Authority (Alison Harvey of No. 5 Chambers) explained that P was represented by Arianna Kelly of 39 Essex Chambers; the Clinical Commissioning Group (CCG) was represented by Benjamin Tankel, also of 39 Essex Chambers; and the NHS Trust was represented by Caroline Hallissey, of Serjeant’s Inn Chambers. There was also a Litigant in Person present in court – P’s ‘mum’ (during his time in the UK, he has lived with a married couple he now calls ‘mum’ and ‘dad’). The decision facing the court (a best interests decision – described by Mr Justice Hayden as being “deep in the welfare stage” of Court of Protection proceedings) was concerned with P’s residence and care. Having stopped counsel from progressing to the matter before the court, the judge announced that he would “like the case opened in context – for the public” according to the “guidance”. This was especially helpful to me as I adjusted my expectations in light of the departure from the published Cause List. Mr Justice Hayden then went on to take over from the barrister and outline the facts of the case himself – apologising to Ms Harvey for doing so but stating that he “had the facts at [his] fingertips”. 

Mr Justice Hayden explained that the case before the court concerned a man who is “fixated” on the refusal of the Home Office to acknowledge that he is the age he says he is. He briefly set out the facts as I have outlined them above – emphasising that P’s “fixation” was an “unbalanced factor” in his reasoning.  P places great weight on his correct date of birth as key to his entire identity.  Mr Justice Hayden pointed out that the acknowledgement of P’s age claim would set no precedent and would place no financial burden on the State (in fact it is likely to reduce such a burden because it would delay his entitlement to a state pension). As P’s dispute has made its way through the court system (an application to appeal is currently before the Supreme Court), WA has been consistently refusing food and fluids and is now in “parlous circumstances”. His ‘parents’, understandably, are “visibly exhausted and emotionally drained – how much they have left to give I don’t know, how much it is reasonable to expect them to give, I don’t know”. 

The judge continued, explaining that the reason the case is before the court at this time is that WA was recently admitted to hospital after what transpired to be a second suicide attempt – described by the judge as “a cry for help” rather than a “serious attempt”. He had required intravenous fluids to address clinical dehydration but was now assessed as medically fit for discharge. He remained in hospital although there was no clinical need for this, as it seemed he did not feel ‘safe’ to leave – the hospital had supported him to stay in acknowledgement of his desperate situation and the acute need of his parents for respite, but this was no longer appropriate as he did not need the bed he was occupying. It seemed that two options were to be considered:

  1. WA to return to his parents with a “reinvigorated” package of support.
  2. WA to move to his own flat with 24-hour support.

Counsel for the Local Authority began to explain that her client will put in a package of care at home and started to speak to P’s views but was quickly stopped by the judge who redirected the discussion back to best interests. Counsel then set out the LA’s position that a move home with a package of care is in P’s best interests but there are concerns about how his parents will cope. Again, Mr Justice Hayden interjected, stating that he wished for a “proper, rigorous consideration of best interests”. 

The positions of the parties were then outlined: P’s barrister explained how P does not feel safe to go home. It was pointed out, importantly, that while P has been deemed to lack the capacity to make decisions regarding his intake of nutrition and hydration, he has litigation capacity and therefore instructs his counsel (rather than being represented by the Official Solicitor). No capacity assessment has been undertaken regarding decisions concerning his residence. A seemingly “intractable” situation therefore seemed to have arisen in which P was not prepared to agree to discharge from hospital but, as Mr Justice Hayden pointed out – “That’s not an option. I can’t order the hospital not to discharge him”. P’s barrister’s argument that responsibility lay with the hospital to look to its own systems and resources was “not at all attractive” to the judge. The Clinical Commissioning Group (CCG) did not offer a view on P’s best interests, but (like the Local Authority) was ready to do whatever it could to help. P’s parents’ position was outlined on their behalf: they wished to have P back in their care but were respectful of his wishes.  

There was a period of discussion during which it seemed that no consensus could be reached concerning P’s best interests. Mr Justice Hayden appeared rather brusque with Ms Harvey (counsel for the Local Authority), as she attempted to explain the Local Authority’s position. Ms Harvey explained that the Local Authority had a “backup” plan of a flat for P (with a support plan in place), but this seemed an unacceptable position to the judge, who maintained that her client must “engage with the facts, not as you would like them to be”. From my perspective, it actually seemed refreshing to see a public body attempting to “be ready with something in our back pocket”.  

It turned out that the difficulty with P going home was that he would not be able to have intravenous fluids ‘in the community’ as these could only safely be administered in hospital. This was apparently set out in documents stating the Trust’s position and an attached email from one of P’s treating clinicians. Mr Justice Hayden explained that he had not seen the information and the court was “besieged by documents”. Ms Harvey also said that the Local Authority had only found out on the morning of the hearing about the issue with accessing treatment in the community and this was the reason for their lack of prepared response – this in spite of the fact that the previous Order had been designed to get this information. From my observations of other court proceedings, I note that it is often the case in proceedings before the Court of Protection that work ordered by way of case management seems to be done at the last minute before a case comes back before the court; but given the rather urgent nature of the matter in this case, it could simply be that the lack of preparedness I observed was indicative of the pace of proceedings. In any case, the judge went off-screen so he could read the documents that were going to be resent by Ms Harvey while Ms Hallissey (counsel for the Trust) contacted the doctor to give evidence. 

A clinician gives evidence

The doctor joined the call and was sworn in by the court associate. He told the court that he was responsible for P during his current admission and that he had previously been involved in his treatment during the last year too. He explained that P had experienced no “serious” consequences as a result of his overdose: when he arrived at hospital his salt levels and kidney function were normal, and he had been assessed by mental health colleagues as being a “low risk” for further suicide attempts. There was therefore no need for P to be admitted, but he said that he did not want to go home. Given the nature of his situation, it was agreed that he should stay in hospital for 48-72 hours to give his parents some “much-needed respite”. He was monitored on a general internal medicine ward with daily blood tests and the day before the hearing had experienced dehydration and ketoacidosis – a response to starvation where the body begins to break down fats rather than proteins and carbohydrates in the diet. He was given fluids, and intravenous glucose to reverse the starvation response and as of lunchtime on the day of the hearing was clinically fit for discharge from hospital. 

Counsel for the Trust (Ms Hallissey) asked the doctor “Could you explain how IV fluids are given, and can they be given in the community?”. He explained that they are a prescription medication with specific uses and risks – a particular risk being ‘volume overload’ where liquid in the system causes too much blood to overwhelm the heart. This can cause death. 

Asked by the judge whether, “If a patient has recently been ketotic are they more vulnerable to cardio problems if there were to be volume overload?” the doctor explained that while this was not directly the case, the answer was “obliquely yes”. However, as P was rehydrated, he was no longer ketotic. Mr Justice Hayden then asked whether P’s “maladaptive relationship with food” may have led to consequent vulnerability of his heart; to which the clinician explained that as P may have undergone physiological adaptation to living with mild sub-clinical dehydration there was a possibility that he may be more vulnerable to volume overload. So, as summarised by the judge – “it’s certainly not going to help”. 

The question was then revisited as to whether fluids could be prescribed to P in the community either at home (with his parents) or in a flat.  The doctor’s response was that he could not imagine a situation where this would be possible in the community – because of the need for close monitoring of the speed and consistency of fluid delivery and ability to respond to changes that can sometimes be serious (e.g., the possibility of hyperkalaemia: elevated potassium levels that can lead to sudden death). It is for these reasons that national guidelines for the treatment of acute kidney injury indicate that intravenous fluids should be administered in hospital. 

Conversation between Mr Justice Hayden and the doctor then became rather difficult to follow, as the judge began to ask about IV pain relief. It transpired that this was because he was conflating IV fluids and pain relief, and this turned out to be key to the direction the case then took. The doctor explained that there was limited (though not uncontroversial) evidence of the efficacy of sub-cutaneous and IV fluids in the community in palliative contexts – as distinct from symptomatic treatment and the preservation of life in medical emergencies. It seemed that the distinction arose from the different balance of risks and benefits in situations where the objective of prescribing IV fluids in the community is to control pain at the end of life, compared with managing acute dehydration in a person not at end of life. Discussion between judge and doctor did not seem to produce progress, and Mr Justice Hayden characterised the situation as an “acutely complex moral and ethical dilemma” as P was simultaneously not eating but accepting IV fluids in a “hunger strike that isn’t a hunger strike”. Judge and doctor agreed that, in their view, the situation is “unprecedented”. 

 Mr Justice Hayden reminded himself and the court that respect for P’s autonomy had been key to the  judgment  made last year concerning him. He then asked the questions that seemed to me to be the turning point of the decision-making process unfolding in court – “What is he saying to us?” and “What is his objective?”. In a weak, vulnerable, fragile state – probably permanently sub-clinically dehydrated, but accepting intravenous fluids; it seems that P is “riding two horses”, and the judge doesn’t “profess to know what he seeks”. P can also resort to “passive acquiescence” as a result of his history of trauma, meaning he acquiesces to decisions that he does not actually wish. This obviously adds a layer of confusion and lack of certainty in attempting to deduce what P wishes to communicate. Is P seeking palliative relief from pain without taking the decision to drink? Has he, in effect, “put himself on a palliative plan”? The clinician confirmed that this could be the case. 

The situation changed dramatically as a result of this exchange. Mr Justice Hayden confirmed that while the primary concern of any clinician is with the preservation of life, this actually refers to “sav[ing] a life that can be saved”, and that the judge himself had determined that P can decide for himself whether his life ‘can be saved’. On this basis, is IV fluid both ethical and consistent with P’s welfare? The doctor confirmed that he could see a role for treatment with IV fluid for the relief of the symptoms of dehydration as distinct from, and recognising that this is not the same as, attempting to cure acute medical illness. This approach would also be likely to avoid the “spiral” situation wherein P became dehydrated while ‘in the community’, needing readmission to hospital for administering of IV fluids, then being discharged when rehydrated only to become dehydrated again while at home leading to further readmissions. As Mr Justice Hayden put it – providing IV fluids on a palliative basis would represent “defeat for those of us who seek him to live but [would] respect his wishes to die”. 

Following some further discussion about the possible length of time P may survive with IV fluids but no significant nutrition intake, and the extent to which prescription of intravenous fluids in the community may impact on P’s motivation for nutrition intake (as a side-effect of nutrition intake is rehydration); the judge thanked the doctor for “having been involved in this dialectic, very properly I may say”. He confirmed what I had felt from my observation – that the case now was “a very different situation than the one we opened with”. The position now was that if P were not to take up the “offer” of life-saving treatment, it would in theory be possible for him to access intravenous fluids in the community for palliative purposes. This was indeed a dramatic shift, and the judge’s call for a five-minute recess to “absorb and think” seemed wholly appropriate. I used that time to reflect on my observations from this powerful discussion – as a seemingly “intractable” ethical dilemma was made tractable with an attempt to ascertain what P may be attempting to communicate. 

Evidence from P’s mum

Mr Justice Hayden then agreed with P’s barrister (Ms Kelly) that he should proceed by speaking with P’s mum and then with P himself (with the public platform being cleared so the judge would speak with P in private). There were some technical problems with P’s mum joining the platform, so she dialled in by phone. She was sworn in by the court associate and the judge began to speak with her.

They began by establishing that an option that may be possible is that P would come home to his mum and dad with support and receive IV fluids, meaning that he would remain hydrated and with diminished pain. P’s mum confirmed that she had followed this in the doctor’s evidence. Then Mr Justice Hayden began to discuss with P’s mum her views: 

Judge: You may want [the proposed plan] for a different reason to [P].

P’s mum: True.

Judge: You might see it as a way of keeping him alive, but he sees it as a way of managing the end of his life.

P’s mum: That’s true.

Judge: [Missed full transcription – reference to “from your perspective” and “risks”]

P’s mum: I would like to take [P] home. My husband and I want to nurse [P] at home as long as possible. We want him to be out of discomfort. It is very distressing seeing him in distress.

Mr Justice Hayden then took a very serious tone with P’s mum. He acknowledged that she “get[s] frustrated and angry” but pointed to the high level of care P was receiving from his clinical team. He referenced the “open-minded” approach of the doctor and described this as “a hallmark of a very good doctor”. He asked, “Do you think P wants to die now?” to which P’s mum responded by asking if she could read a statement she had from P. After ascertaining that this was a brief statement that had not previously been seen by anyone else, the judge allowed her to go ahead, and we heard from P via his mum:

You know when everyone keeps saying ‘Keep going, keep going ‘till the decision on immigration is made’ it’s the only way I can see a little hope.

This statement did not make total sense to me, I think this could be because there are outstanding proceedings in relation to P outside of the Court of Protection, the details of which I have not accessed and were not discussed during this hearing. Discussion between the judge and P’s mum continued with an exploration of the extent to which P may have taken in nutrition while at home. His mum carefully explained in detail how she had supported P to observe Ramadan by breaking his fast with three dates, as well as sometimes giving him instant jelly that she bought for her grandchildren. This exchange characterised the detail in which Mr Justice Hayden often engages when ascertaining facts concerning P and their views, wishes, feelings, and beliefs as he sought to understand how P’s mum had made decisions regarding the types of dates she bought, where from, and the extent to which P had inputted into such decisions; and his enthusiasm (or lack thereof) for choices relating to nutrition. It was also clear to me that P’s mum took pride in her knowledge of P and his views – as she explained that “over the years I’ve helped [him] practise Ramadan…” she had “become accustomed” to his preferences so that she “buy[s] the things he likes”, as over the period of 12 years “I’ve got to know what he likes”. 

The judge listened carefully to P’s mum, but then tactfully raised the possibility that P may have at times been engaging in the “passive acquiescence” that is a consequence of his history of trauma. He reminded her that P “has a habit, because of what he’s been through, of acquiescing to things he doesn’t want”. When P’s mum replied: “But I also know [P] very well” the judge took care to check that P’s mum and he were “still on the same page”. In doing this, he was also careful not to reveal more in open court of P’s personal history than necessary – he checked P’s mum’s understanding of “what he’s been through” by asking her to confirm the country in which these events took place, then telling her she should give no more details of these past events. The interaction ended with Mr Justice Hayden asking if P’s mum would be happy with the proposed plan (for P to come home with support and receive IV fluids in the community when required) and she confirmed she would. 

Court is cleared and the judge speaks to P

At 16.09 the court was cleared in order that Mr Justice Hayden could speak to P (from his hospital bed) in private. This meant everyone was required to vacate the online platform and would be notified when the hearing was to recommence. I received this notification by email from court staff at 16.33 and logged onto MS Teams as the hearing recommenced. 

 Mr Justice Hayden welcomed the parties back, addressing Ms Harvey (counsel for the applicant Local Authority): “We’ve moved towards a consensus that merits a reflection and revisiting of the care plan”. There was a brief discussion – prompted by Ms Hallisey (counsel for the Trust) as to the practicalities of arranging IV fluids in the community, but the judge declined to be drawn into the details of care planning; stating instead that a day was required for the parties to look at the proposal and make a plan, and at that point if they wish to restore the application “I will do my level best to make myself available”. As to the question of where P was to go in the interim, Mr Justice Hayden was adamant that “he’s not going anywhere” – encouraging the parties to meet and reflecting that while the case “seemed intractable at 2 o’clock” there is now support for a way forward, and “it’s a question of how, not if, that needs to be clear”. As an observer, I sensed a tension between the perspective of the judge (seemingly oriented towards what one might describe as the ‘headline’ outcome of the proceedings) and the parties (who, understandably, seemed largely concerned with the practicalities and logistics of how the proposed outcome may be realised within the constraints of their respective legal and policy obligations). I did not, however, see this tension explicated or resolved during the proceedings. 

 The hearing concluded with a brief coda prompted by a question raised by Benjamin Tankel (counsel for the CCG) as to whether, given the determination that P had elected to put himself on a palliative care pathway, he should have a DNAR (a “Do Not Resuscitate” order) in place, as this appeared to be “implicit in the direction” and would “make sense and be consistent” with the reasoning behind it. Mr Justice Hayden, however, expressed his surprise at being asked to deal with this new issue at such a late stage in the proceedings. He expressed doubt that the case was yet at the point where a DNAR order would be appropriate – suggesting this may be “something for the future, but not now”. After discussing again with the clinician who had given evidence earlier the treatment pathway agreed for P, and reviewing the data concerning outcomes of resuscitation out of, and in hospital, the judge indicated that he wished to discuss the question of a DNAR order with P himself, and that he would meet with him tomorrow – virtually (asking that the hospital facilitate this with provision of an iPad or similar), and at a time convenient to P. He was “not going to take a decision on the DNAR until I have heard what [P] has to say”, describing P as “an articulate and engaging young man despite lacking capacity” (the disabled activist in me noted that these are not necessarily mutually exclusive characteristics). The judge wanted to hear “his authentic voice” and emphasised the importance of autonomy for a person who is “incapacitous on the central issue” – remarking that “Incapacitous people have a right to autonomy, just as capacitous people do”. Mr Justice Hayden was “simply not prepared” to make a decision without hearing from P. 

As the hearing moved towards a close, and the parties once again demonstrated their concern with the practicalities and logistical issues arising from the decision of the court – with Ms Harvey (counsel for the applicant Local Authority) asking about the impact of the decision on the timeline set out in the original draft order, Mr Justice Hayden indicated that he was “not going to descend to that level of detail…manifestly there have to be timescales but I am not going to be prescriptive”. Again, I noted a sense of competing priorities. I also observed something of the approach Mr Justice Hayden had taken to his engagement with P – as the judge remarked that “I’m trying to empower him to make these sorts of active decisions”. The judge was clearly keen to emphasise that P’s lack of capacity in certain specific domains did not mean he should be deprived of self-determination, and that he should be encouraged to engage in such active decision-making. It was shortly after this, with some brief exchanges regarding discharge and future treatment planning; and the logistics of putting the “consensus” reached into practice in the coming days, that the hearing came to a conclusion.

Personal Reflections

Unsurprisingly, given the gravity of what is at stake at the heart of this case, I was left with much to consider having observed this hearing. As an advocate and disabled activist, I was pleased to observe the ways in which Mr Justice Hayden facilitated P’s participation in the hearing, and the centrality of P’s “voice” throughout the proceedings. As an academic lawyer I noted the playing out in practice of jurisprudential tensions between “public” socio-political, and “private” individual concerns in the operation of law and its social implications. But – by far most overwhelmingly – as a human being, I can only send P my every good wish and kind thought. I hope beyond hope that the seemingly intractable dispute between him and the Home Office concerning his date of birth may somehow be resolved, and that he might feel able to end his hunger strike. And I hope that he is able to access treatment to manage his physical, mental, and emotional pain and discomfort. But, more fundamentally, I hope above all that he is able to find peace. 

Gill Loomes-Quinn is a disability rights scholar-activist. She is founding co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project. She tweets @GillLoomesQuinn

Image taken from ‘The Art of Speaking Your Mind’: Screen print on canvas by Gill Loomes-Quinn

2 thoughts on ““What is he saying to us?” The ‘voice’ of a hunger-striking man in a best interests decision about his medical treatment

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