Hunger Striking for his Identity: Autonomy, Capacity, and Justice

By Celia Kitzinger with Jo Beswick, Jack Broom, Simon Bruce, Moira Hill, Emma Rich, Vicki Sudall, and Adam Tanner – on 13th July, 2020

The judgment from this hearing has since been published here: Avon and Wiltshire Mental Health Partnership v WA & Anor [2020] EWCOP 37 (16 July 2020)

When you ask to observe a hearing in the Court of Protection you never know quite what you’re going to be exposed to. 

This hearing was listed simply as “COP 13617268 Re WA before Mr Justice Hayden”.

Only after requesting access did we learn that the hearing was scheduled to last for three days, and in fact it continued into a fourth.  Celia, Moira and Adam attended the entire hearing: others attended only parts. (Jack was only able to be there for the first day.)

It turned out to be a harrowing experience. It concerned a life and death issue for a someone who’d been tortured and sexually abused and was now engaged in a hunger strike by way of political protest.  It covered fundamental issues, central to all of us as human beings: the way we define our own identities versus the way we are defined by the state; at what point strong beliefs and values, when not shared by others, become evidence of mental illness; why sometimes the decisions we feel compelled to make can hurt the people we love (and even offend against our faith); how to balance the wish to save someone’s life with respect for their autonomy. 

We approached the hearing from very different personal and professional perspectives: for many (excepting only Celia and Adam) it was the first COP hearing observed.  We are: a first year law student (Jack), a PhD researcher in mental capacity law (Adam), a law lecturer (Jo), a practising lawyer (Simon), a student midwife (Emma), a nurse (Vicki), a former nurse of 30 years and (now) end of life coach (Moira) and an academic psychologist with a decade of research in medical treatment cases concerning vegetative and minimally conscious patients (Celia).  Most of us (numbers grew as the days went on) were grateful to be part of a private chat room convened during the hearing, where we were able to comment on what was going on and check out our understandings with each other, as well as exchange information as needed (e.g. what’s a COP3?).  And after each break: “Are you in yet?  Have they started – I’m still in the waiting room.”

After giving a background summary to the case, and the decisions before the court, we will describe our own (sometimes shifting) impressions and responses to what we saw, and reflect on what we learnt.  We do not have access to the court bundle or other documents before the court and although this is as accurate as we could make it, it should not be relied upon for matters of fact or law.  There will be a published judgment which should be referred to for this purpose. 

Background

The hearing we observed was about a young man, Mr A, so committed to an aspect of his identity that he is willing to starve himself to death rather than have it taken away from him.  He is on hunger strike as part of what the judge, Mr Justice Hayden, described as a “crusade for the reinstatement of his own identity”.

We heard, over the course of three and a half days, that Mr A left his native Palestine a decade ago after his parents had been killed and he had been tortured in attempts to recruit him as a suicide bomber for Hamas.  He eventually arrived in England after enduring horrific events in Italy where he was sexually abused by a foster carer who was supposed to be looking after him, and his friend was killed in front of him.  He arrived here without an official birth certificate, but documents given him by his grandmother recorded him as having been born in 1994, and he believed himself to be then 14.  He was fostered by loving and supportive parents (referred to in court as his “mother” and “father”) and started school in year 10 with others of his age.  

But the Home Office decided, based on biometric tests, that he was 5 years older than he said he was, and issued him with a new date of birth.  (Information about how and why the Home Office assesses immigrants’ age here.). From the outset Mr A found this impossible to accept.  He would not learn the new date of birth and found it unbearable to report it in official contexts, e.g. in relation to a driving licence, bank records, and job applications.  

He challenged the Home Office age identification several times and was given legal advice in March 2020 that suggested that his prospects of successful challenge were small.  He started a hunger strike as a form of political protest. He also issued judicial proceedings some 8 weeks later.  The revised date of birth assigned to him by the Home Office makes no difference at all to his immigration status: he was granted indefinite leave to remain in 2019.  The only difference it would make to his state-related benefits if the Home Office accepted his date of birth would be that he would not be eligible for a state pension until 5 years later than currently.

His mother described how she initially cared for him at home during his hunger strike until he became too unwell. He was sectioned in April and again in May(detained under first s2 and then  s3 Mental Health Act), with a treatment plan including insertion of a nasogastric tube to deliver nutrition and hydration, antidepressants and Electro Convulsive Therapy (ECT).  Insertion of the nasogastric tube against his will left him curled up in a foetal position, weeping uncontrollably because “it was an act of force, against his will” (Mother).  His father reported that “a GP who saw him realised he was wrongly sectioned at that time and it was quickly removed.”  He was subsequently found to have the mental capacity to make this decision (to eat or not to eat, and whether or not to have a feeding tube) for himself.  His counsel said at one point that all but one of the 18 assessments of his mental capacity found him to have capacity to make this decision. The most recent assessment found capacity to be “borderline or possibly lacking”.

Since issuing judicial proceedings, Mr A has consented to (or accepted) a nasogastric tube through which he is currently receiving about 600 calories a day, plus another 200 calories via additional dextrose in IV fluids (less than half of what he needs).  He also takes occasional nutrition by mouth including Fortsip, yoghurt and dates.  His current BMI is 14 which is “just on the cusp of starting to threaten health and life”.  He is accepting a limited amount of nutrition now only so as to be still alive to learn the outcome of the judicial review. 

According to the clear and succinct introductory summary from Fiona Paterson, counsel for the applicant (the Trust responsible for Mr A’s psychiatric treatment) “He’s made it quite clear to those who look after him and those who love him that if the Home Office refuse to amend his biometric age he will return to the hunger strike and bring about death.”

The hunger strike is widely recognised as a weapon of last resort by the powerless and disenfranchised.  There have been more than 3,000 hunger strikes in UK immigration centres since 2015, according to Home Office figures.  What makes Mr A’s hunger strike distinctive is both his determination to pursue it to death if need be (many are ‘symbolic’ refusals of food for not much more than 48 hours) and the fact that, whereas other hunger strikers are protesting indefinite detention or demanding leave to remain in the country, his own immigration status is entirely settled and secure. 

The decisions before the court

The court was being asked to decide whether Mr A had the mental capacity to make his own decisions about his intake of nutrition and hydration, and if not, to decide whether it would be in his best interests to deliver clinically assisted nutrition and hydration without his explicit consent. We watched as the judge and the advocates wrestled with key questions about both capacity and best interests and raised these questions with expert witnesses and family members.

Capacity

In order to decide that Mr A does not have the mental capacity to make his own decisions, the court would have to find (in accordance with the Mental Capacity Act 2005) that he has “an impairment of, or a disturbance in the functioning of, the mind or brain” (s. 2(1)) and that this causes him to be unable —

(a) to understand the information relevant to the decision,

(b) to retain that information,

(c) to use or weigh that information as part of the process of making the decision, or

(d) to communicate his decision (whether by talking, using sign language or any other means). (s3(1) MCA 2005)

It was not entirely clear what “impairment” or “disturbance” of mind or brain was being invoked as the basis for engaging s. 3(1) (the functional test of capacity).  In most of the hearings I’ve observed this has relied upon a diagnostic category (‘dementia’, ‘learning disability’, ‘schizophrenia).  Although Mr A has some of the symptom of Post Traumatic Stress Disorder (PTSD) – and it was agreed that he has suffered from this in the past – none of the experts who have examined him finds that he currently meets the diagnostic criteria for PTSD.  Nor is he currently clinically depressed.  One possibility, offered by two psychiatrists called into court as expert witnesses, was that Mr A’s impairment of the mind is that he has an “over-valued idea” – the value he places on his correct date of birth – which results in “abnormal and over-rigid thinking” and “maladapted behaviour”. 

If the judge were to accept that either ‘sub-threshold’ PTSD symptoms or the holding of an ‘over-valued idea’ constituted an impairment of Mr Y’s mind, then the next question is whether this impairment prevents him from making his own decisions about nutrition (with reference to s. 3(1) (a)-(d) quoted above).  There was no dispute, I think, about his ability to understand or retain information, nor about his ability to communicate it – we heard him do so articulately and powerfully in court.  The hesitation over his mental capacity concerns his ability to ‘use or weigh’ information relevant to his decision. According to the two psychiatrists, his ‘over-valued’ idea about the importance of his correct date of birth causes an inability to weigh information about the Home Office. Both these psychiatrists found, on the balance of probabilities, that Mr A lacks capacity to make his own decisions – but agreed that the decision was “on a knife-edge”. 

By contrast, a psychologist (an expert in PTSD) who also assessed him said that he did have capacity to make these decisions. She found him to be “incredibly resilient”, with a “strong sense of integrity’ and of “what’s right and wrong”.  She recognised the hunger strike as a “logical outcome” given that “he’s tried everything else with the Home Office”.

If Mr A is found to have capacity to make his own decisions about nutrition, then it is up to him whether or not he eats and up to him whether or not he accepts nasogastric feeding.  Everyone around him – his family and health care team – can support and encourage him to accept nutrition but nobody, by law, can compel him.  The World Medical Association unequivocally condemns force-feeding of hunger strikers as “unethical’, and as “a form of inhuman and degrading treatment”.

Best Interests

If the judge were to decide that Mr A lacks capacity to make his own decisions about nutrition, then he would need to make a ‘best interests’ decision which takes into account Mr A’s wishes and feelings (although these are not determinative).  There is no question about what his current wishes and feelings are: he wishes to continue his hunger strike – to death if necessary – unless the Home Office recognises his correct date of birth. 

None of the parties (or witnesses) said that it would be in Mr A’s best interests to use physical or chemical restraint to compel him to receive nutrition against his wishes: that had already been tried, with devastating results, when he was sectioned.  But there was a view that “gentle persuasion” could and should be used, with mild sedation to manage anxiety about (for example) reinsertion of a nasogastric tube.  The meaning of “gentle persuasion” was extensively explored with reference to a Treatment Plan that was several times revised and circulated to the court (but which we did not see).  My understanding is that the final version before the court includes physical treatment without Mr A’s agreement or assent – and that it goes further than that and includes treatment even if Mr A says “No”.  In the face of an explicit refusal, treatment could be given unless Mr A physically resists, for example by pulling out the tube or trying to prevent its insertion by physically lashing out. (It’s possible that I’m wrong about this – we did not see the Treatment Plan and it was re-written several times during the course of the hearing, and amendments were still being suggested in the submissions on Day 4.)

Both psychiatrists and the psychologist believed that he might change his views if he engaged with appropriate therapy. They believe that psychological or psychoanalytic therapies are in Mr Y’s best interests and that if he were able and willing to engage in such therapies he may no longer wish to continue his hunger strike because he would have been helped to have a more  ‘flexible’ approach concerning the importance of his date of birth to his overall identity.  In order to provide this therapy, nutrition also needs to be provided.  “We’re running out of time here. He’s getting more and more poorly, more and more malnourished. If we’re going to offer therapy, we have to offer nourishment. “

But Mr A is clear that he doesn’t want more nutrition and doesn’t want therapy: he described it as “wasted ink”.  He said, “I need my identity. I don’t need more than that”.  

There is a clear additional concern that, as Mr Justice Hayden put it, “any compulsion in the Treatment Plan runs the very real risk of reawakening the trauma of his earlier experiences” – something which has to be taken very seriously in considering his best interests.   As counsel for the applicant said in introducing the case, “Everyone would wish to avert a tragedy but persevering with treatment plans that reawaken old traumas may serve no purpose”, to which the judge added “and may be positively harmful”. 

Mr Justice Hayden also raised (repeatedly) a question as to whether the Treatment Plan would be any different whether Mr A were deemed capacitous or not – given that if he has capacity he is not consenting to treatment, and if he lacks capacity he is not assenting to it: it would be unlawful to give it in the former circumstance and arguably contrary to his best interest in the latter.

Day 1: Monday 6 July

Joining the virtual court

For many people this was a new experience – and there’s always some anxiety associated with joining an online video-platform successfully (this one was Microsoft Teams).

I was a first-time attendee at an online hearing but had become interested after seeing tweets from @KitzingerCelia. I found the initial waiting rather nerve wracking, being met with the message “We’ve let people in the meeting know you are waiting”. Although the email had directed I should be logged in by 11.30am, it was 12.06 when everything burst into life, finally vanquishing my doubts that I had done something incorrectly. The clerk asked that we should show our faces initially to help establish who was present. After that I was able to relax.

Jo Beswick

The Transparency Order

After a brief introduction to the people attending the court, the hearing opened with a discussion about the Transparency Order – which routinely states that nothing can be published that identifies or is likely to identify that the person at the centre of the case, and their family, are the subject of Court of Protection proceedings.  Stories about Mr A, we were told, had already been published by the BBC and the Guardian newspaper.  This means it would be “extraordinarily easy to identify him now because of what’s in the public domain”.  These existing publications don’t name him, don’t refer to the critical state of his health, and don’t refer to this hearing, but the details of his story are singular enough to make identification easy.  Mr Justice Hayden reflected aloud for a while about the importance of freedom of expression in reporting on a case as it unfolds, especially in a case which is a political “crusade”, but accepted that the Transparency Order should remain in its usual form for the time being.  This severely limited what we could say publicly – although I did post a thread about the hearing (omitting all details about the hunger strike and the Home Office) on the evening of the third day (here), which attracted a great deal of commentary – and a revised Transparency Order has subsequently been issued.

The opening summary gave sufficient information that two of us were able to google and locate both the Guardian article and the BBC report and to share them with others in the chat room. 

Listening to Mr A’s voice

Mr A has been found to have capacity to litigate this case: he was the first respondent and had instructed his own solicitor and counsel (Katie Scott).  He wanted to participate in the court proceedings from his hospital bed and to address the judge – but although he was willing to be seen by the judge (in fact, had already met him), he did not wish for members of the public to see him in his current state.  An enormous amount of time, care and attention was devoted to making this possible and it eventually happened by Mr Justice Hayden using a different video-platform (Zoom I think) to speak with Mr A, while remaining on Microsoft Teams, so that we could all see the judge talking with Mr A, and hear Mr A’s statements but without seeing him.  They talked for about half an hour.  This conversation made a huge impact on observers, in part because “we could all appreciate A as the person he is and not just some faceless entity” (Vicki Sudall)

From our chat room:

I think it’s fantastic that they are trying so hard to make sure that Mr A has his dignity maintained

Emma Rich · Mon 12:59 PM

True example of an holistic, person centred approach – sadly these are words that can be said often but not always achieved.

Moira · Mon 2:34 PM

The judge is very natural and down to earth and seems genuinely interested in P as an individual

Vicki Sudall · Mon 2:36 PM

The Supreme Court in Aintree v James [2013] UKSC 67, and subsequent case law, has made it clear that a patient’s wishes and feelings are key in making a decision and should be heard in their proceedings.Mr Justice Hayden exemplified precisely that. In this hearing, the Court was able not merely to have a statement read aloud by Mr A’s counsel, but Mr A instead joined the call and spoke directly to the Court for an extended period. This discussion between Hayden J and the patient was informal, light-hearted and was most of all human and heartfelt. Hayden J asked the pressing questions about how the patient reconciled his wish to die with his faith and why he had refused nutrition; however, more importantly, he sought to understand and learn about Mr A, he wanted to know his favourite food, his prior life and about his family. It is cases such as these which indicate the need for excellent judicial oversight with judges who can understand the issues, see inconsistencies and press to find the real issues.

Adam Tanner

One vivid memory of the case was when the judge asked one question to Mr A. It was arguably the most important question of the case, not from a legal perspective, but from a human perspective. The judge simply asked Mr A, “what would you do if your date of birth wasn’t recognised?” The reply from Mr A was striking – along with the silence afterwards: Mr A simply replied “I will die.  The silence from the judge was telling of the seriousness of this case. Justice Hayden is the vice-president of the Court of Protection and he is no doubt used to hearing evidence of a sensitive nature due to his role. Mr A saying he wants to die if his date of birth isn’t recognised was incredibly difficult to hear, so I can understand why Justice Hayden did not know what to say in response. Hearing a fellow human being say they would die is the most surreal thing and I felt a great deal of sympathy for Mr A. During the time I heard Mr A speak, I heard of how he had an incredibly tough childhood after fleeing his home country and how his date of birth is about his identity. It was hard to comprehend what Mr A has gone through and I feel like the fact he will die for something that means so much is incredibly sad.

Jack Broom

Mr Justice Hayden questioned Mr A in a compassionate, thoughtful and respectful manner – and engaged on a very human level. He showed true empathy as he acknowledged Mr A’s extremely difficult past yet spent as much time as needed focussing on the positive aspects of his life, what he felt he had achieved, and his wishes for the future.

Moira Hill

Witness Statement from Psychiatrist

Many of us struggled with the evidence provided by the first expert witness called in this case, who had concluded that Mr A lacked capacity to make decisions about his nutrition.  She stated that his preoccupation with the Home Office and his date of birth was an impairment of mind.  It “overwhelms” his ability to weigh information and leads to ‘concrete’ and ‘inflexible’ thinking and maladaptive behaviour.  For example, he had wanted to work at the Nightingale hospital “but that was scuppered because he couldn’t bring himself to give the wrong date of birth” to officials, who therefore couldn’t find evidence of existence.   She was unable to explain counter-evidence such as the fact that Mr A had willingly signed a legal aid form with the wrong date of birth on it in order to have his own representation in this court case.  Nor did she have a response when asked: “Isn’t your real complaint not that he’s failing to use and weigh information but rather about the weight he gives to his date of birth and the pain it will cause him to live with the wrong date of birth attributed to him by the state.”  For this psychiatrist, Mr A’s concrete preoccupation (“every single negative thing is wrapped up in his date of birth”) is a barrier to his ability to weigh and balance.

From our chat room:

Having a clear view and passionate desire to achieve something is so often pushed aside as a mental illness or something of the like.

Adam Tanner · Mon 3:16 PM

So Emily Davidson who threw herself under a horse to protest government’s refusal to allow women to vote, and suffragettes’ hunger strikes were all evidence of an impairment of the mind or brain – a preoccupation with women’s right, so extraordinarily outwith normal thinking at the time. A fixed preoccupation of delusional intensity!

Celia Kitzinger. Mon 3:16 PM

The psychiatrist isn’t convincing me of her conclusion that he doesn’t have capacity. It just seems that she disagrees with his decision. From a lot of the reports they have discussed it seems that he can understand and weigh up information to make decisions.

Vicki Sudall · Mon 3:54 PM

Yes, exactly that, it strikes me that it cannot be grasped how much his date of birth means to him and so everything that follows for them must be illogical also

Adam Tanner · Mon 3:54 PM

I don’t understand it! I completely get where he was coming from when he explained the importance of his DOB to him. It’s part of his identity which is all he has left from his birth parents! How can they not get that! 

Emma Rich · Mon 3:56 PM

The main basis for the psychiatrist concluding that Mr A lacked capacity was his fixation on his date of birth. The psychiatrist seemed to find that this “fixed belief” or ‘over-valued belief’ amounted to some sort of delusion, or disordered thinking and it was this which amounted to a lack of capacity as it prevented him from giving weight to other factors in making his decision.  The psychiatrist claimed that his date of birth is the only thing he cared about and this meant he was unable to weigh it against the fact that it would result in his death or consider the effect it would have on his family.  I found the psychiatrist’s reasoning to be flawed.  In determining capacity, it only matters whether Mr A understands and retains the information and can use and weigh it in making a decision. The fact that Mr A values a particular factor over all the others, is irrelevant to the issue of capacity. It is not for others to decide what should be important to Mr A – that would reflect their values, not his. On further questioning by both Justice Hayden and Mr A’s barrister, the psychiatrist acknowledged that her own values may have influenced her assessment, but she did not concede that her assessment was wrong.  Mr A feels strongly that death would be preferable to the indignity of being stripped of his identity. Although this may seem irrational and the consequences are extreme, that does not mean he lacks capacity. People are allowed to make “bad” decisions and we must accept their autonomy to do so. That can be difficult for many healthcare professionals to accept but we must remember that it is not our role to save patients from themselves. We may disagree with them, we may think they are irrational, we may try to persuade them, but ultimately if they have capacity, we must accept their decision. That does not mean it is easy, especially when it involves someone young and whose death is preventable

. Vicki Sudall

As the hearing for today drew to an end, Hayden gave us all some homework.

Hayden J thoughtfully suggested that his judgment in London Borough of Tower Hamlets v PB [2020] EWCOP 34 would be useful as an illustration about the proper extent of autonomy and he recommended to the expert witness psychiatrist (and to the rest of us) that we might read it before the court reconvened in the morning.  Its especial focus is on explicating s.1(4) Mental Capacity Act 2005 which states “A person is not to be treated as unable to make a decision merely because he makes an unwise decision.”  Misguided paternalism, says Hayden in that judgment, has no place in the Court of Protection. The judgment draws on extensive common law jurisprudence (prior to the Act) recognising that the law does not insist that a person behaves “in such a manner as to deserve approbation from the prudent, the wise or the good”.  It is the ability to take the decision, not the outcome of it which is in focus.  The judgment also quotes an observation from McFarlane L which, says Hayden J “strikes me as capturing and distilling the true essence of this principle”:

“there is a space between an unwise decision and one which an individual does not have the mental capacity to take and … it is important to respect that space, and to ensure that it is preserved, for it is within that space that an individual’s autonomy operates”.

And the end of the judgment (para 51) Hayden reiterates these points:

 i. The obligation of this Court to protect P is not confined to physical, emotional or medical welfare, it extends in all cases and at all times to the protection of P’s autonomy;

ii. The healthy and moral human instinct to protect vulnerable people from unwise, indeed, potentially catastrophic decisions must never be permitted to eclipse their fundamental right to take their own decisions where they have the capacity to do so.

Jo Beswick

Day 2 Tuesday 7 July

The day opened with continued cross questioning of yesterday’s expert witness, and discussion of a range of different possible therapies – including the involvement of a Palestinian therapist who might offer a more ‘culturally sensitive’ approach.  She told the judge she had read the Tower Hamlets judgment he recommended the day before (and some other judgments on BAILII too) and added: “One might think I have a particularly maternalistic approach towards the assessment of capacity”.  She was honest and upfront when asked, “Is it possible that your understandable concern to keep him alive might have influenced your assessment of his capacity.”.  Her answer was: “I think I would be dishonest to claim there was no possibility of that.” The judge thanked her for being “candid” and “helpful”.

A second psychiatrist was sworn in and confirmed that he agreed with the treating team that Mr A’s ‘over-valued idea’ that the Home Office has given him an incorrect date of birth is the impairment of mind that causes a lack of capacity to weigh information relevant to the decision whether or not to accept nutrition.

A third clinician was consulted about the Treatment Plan – the details of which it was virtually impossible for observers to grasp without the paperwork. There seemed at that point to be several different ‘levels’ of treatment, some of them invoking ‘tacit compliance’ rather than explicit consent, and if necessary “physical restraint delivered by staff specifically trained in restraint, registered mental health nurses or security teams” and “closely monitored”.  The judge asked for references to physical restraint to be deleted.

We reflected on the Treatment Plan (insofar as we understood it).

From our chat room

Co-operation is key and no reason so far to think he would be more receptive to going forward, unless dob changed – or, he was receptive to option of different & long-term therapy – narrative therapy – which appears to be new thought and so presumably not yet discussed with him.

Moira · Tue 3:22 PM

I’m really not clear on the plan. I think the point that the plan was trying to make is that NG can easily be dislodged and then need to be replaced. Attempting to insert one on a cooperative patient can be difficult let alone an uncooperative one

Vicki Sudall · Tue 3:26 PM

NG tubes are one of the most uncomfortable procedures that patients report. Having to repeatedly reinsert is traumatic

Vicki Sudall · Tue 3:28 PM

I struggle to see why they feel he will suddenly be accepting of it. If they feel it is only way he will survive is by feeding without consent they need to be clear

Moira · Tue 3:32 PM

I think they are hoping he will just give in and allow them to feed him.

Vicki Sudall · Tue 3:33 PM

Yes, I believe that they think if it is ordered then he will likely acquiesce

Adam Tanner · Tue 3:35 PM

The Dr said it would take a week to build up his nutrition. Do they propose to sedate him for a week to ensure he keeps the NG in? What happens afterwards if he pulls it out and then refuses to eat

Vicki Sudall · Tue 3:35 PM

He [the clinician] seems to be backpeddling

Celia KitzingerTue 3:35 PM

Indeed he does. Nobody seems to fully understand what the plan actually is

Adam Tanner · Tue 3:36 PM

I can’t see how any of this will work

Vicki Sudall · Tue 3:37 PM

The day ended with Mr A asking to address the judge again.  He said that he could hear that clinicians were focussing on how to get him to eat but asked for attention to be directed to the fact that it was the Home Office that was causing him not to eat.  Mr Justice Hayden reassured him that “it is right at the forefront of our minds” and “We are looking out for your best interests and trying to do collectively and individually our best for you”. 

Day 3: Wednesday 8 July

Mr Justice Hayden said that he planned to send an email to the Home Secretary to draw her attention to the circumstances Mr A was in.  He pointed out that she is unlikely to be able to do anything immediately and said that he was concerned about Mr A’s health which is “pivoted at a point where it could easily deteriorate”.   He asked Mr A’s barrister to “discuss with him an increase in his calorific intake”.  He added, “We are all doing our best so I’d like a little bit in return from him, if he could manage it”. 

Then the next witness was sworn in – an expert in PTSD who gave a very different account of Mr A.  In her view, he has capacity.  She provided evidence that he understands other people’s point of view that his date of birth should not play such a large part in his identity, but he doesn’t accept that point of view.   “Every time he has to show ID, get a driver’s licence and get a job he has to show an age that isn’t his real age and it reminds him of the trauma”.  She described him as acting “in accordance with his values” and said, “I don’t think his response is evidence of an impairment of the mind or brain. He’s tried everything with the Home Office.  This is a logical normal outcome given what he’s experienced”.   She was, however, of the view that the psychiatric therapy he has already received is not evidence-based and that “compassion-focussed work” and trauma therapy would be more appropriate. Given that Mr A says he does not want therapy, however, she is not optimistic about this approach.  The main “therapy” he would benefit from, she said, was resolution from the Home Office.  His mother smiled and nodded.

His parents were next: his mother was the second respondent, representing herself.  She read out a moving tribute to her son.  He is “considerate, thoughtful and endearing”, he “puts other people before himself”, he has a “strong will” and “stands by his values and beliefs”. He is “very clear on what’s right and wrong” and “doesn’t cope well with overbearing controlling people who want dominance to impose their will on him”.  She believes that if he can get through this experience he will go on “to lead a full and fulfilling life because he has great potential”. She thanked Mr Justice Hayden because her son “just wanted to be heard and I truly believe that he now thinks he is being heard. Judge Hayden, you’ve been tremendous”.  She answered questions with calm confidence – although the question of whether ‘compliance with’ rather than ‘consent’ or ‘agreement’ to treatment should be sufficient for treatment to be given remained (as it had when discussed by the clinicians) entirely obscure to me.   We were all impressed by the amazing family P has had supporting him since he settled in the UK. 

It was clear from the start of the hearing, that Mr A is very much part of a loving, caring and supportive family. In particular his ‘mum’ and ‘dad’, who play key roles in his life, and who give him not just love but also a feeling of ‘safety’- something that cannot have come easily to Mr A. Mr Justice Hayden said, “you are a young man who is very much loved, by a family who has claimed him”. Despite any potential risk to themselves from Coronavirus, Mr A’s parents visit him twice a day at the hospital and were at his bedside throughout the hearing. It was clear from all who had spoken with them that they have Mr A’s best interests at heart and are strong advocates for him. As he referred to the bond between Mr A and his family, and the importance of continuing to include Mr A’s parents moving forward (as Mr A wished) Mr Justice Hayden made it clear he was not infantilising Mr A in any way.  It was hard not to feel emotional hearing Mr A’s mum give evidence (with additional comments from his dad). The love, and respect, for Mr A shone through their every word. It was clear he is an important member of their family.  While they don’t want him to die, they do not want him to be given treatment “at any cost”.  I am left reflecting: Is this respect for another’s right to self-determination not the purest form of unconditional love?  

Moira Hill

Day 4 Thursday 9 July

The advocates delivered their closing summaries.

Counsel for the Trust responsible for delivering psychiatric services to Mr A (the applicant) sought a declaration that he either lacks capacity or has fluctuating capacity and that it is in his best interests to have treatment as outlined in the Treatment Plan. 

Counsel for the Trust responsible for delivering physical treatment sought a declaration for the delivery of nutrition with (I think) Mr A’s ‘passive acquiescence’ rather than explicit agreement (or ‘consent’).   Mr A is currently accepting (a limited amount of) nutrition and the plan is to give enough nutrition to enable him to be well enough engage in therapy.  He also noted that Mr A “might receive a response from the Home Office which sets him back and that’s why we’ve proposed Option 3” (on the Treatment Plan).  My understanding is that Option 3 means that treatment could be given in the face of Mr A’s explicit refusal unless there is also physical resistance or if he became distressed to an extent that could not be managed with mild sedation:

Judge: What if some disappointing news were to come along and he were to say “absolutely no”,

Counsel: If he were to physically resist…

Judge: (interrupts) No, not physically resist:  “I don’t want to physically resist the nurses, I’m just telling you ‘No’. With pellucid clarity, NO.”

Counsel: It would be an option to continue to provide it under Option 3.

It was however clarified that physical and chemical restraint, and elastic ties and mittens (to prevent removal of an nasogastric tube) would not be used.

Counsel for Mr A said the evidence was strong that Mr A has capacity – and in particular that he’s able to use and weigh information in making a decision.  She  expressed surprise about the (to me, jarring) revelation from the applicant, made as part of her summing up, that treatment was currently being provided on the assumption that Mr A lacked capacity.  I had not understood this to be the case, or how this could be possible: neither, it appears, had she.  “I say it must be on the basis that he has capacity”.  She said that Mr A makes decisions about nutrition based on the weight he gives to the significance of his date of birth – and it is the weight he assigns it that clinicians are objecting to. But the weight he gives to his date of birth is a matter for him and is not relevant to the issue of capacity.  She also queried: “Why is it that Option 3 will accept ‘No means No’ only at the point at which Mr A physically resists.  He is not someone who wants to physically resist.  He doesn’t want to harm others.”

Appropriately enough, Mr A asked to address the judge for a final time.  He wanted to make it crystal clear that his hunger strike is not motivated by depression or loss of capacity but is a political protest against the Home Office with the objective of getting his date of birth back.

Reflections on the experience – a ‘person-centred’ hearing

Having witnessed or participated in cases at every level of the English judicial system I have seen lawyers both good and bad. Every barrister in this case went above and beyond for Mr A and received much-deserved praise from Mr Justice Hayden. The logistics of remote hearings are not ideal for cases such as this, but I believe all Counsel took their time and put Mr A at the centre of everything they did. This hearing has illuminated to me how much of a positive contribution the Court can have on patient-centred discourse

Adam Tanner

This was a great learning experience to broaden my knowledge of mental capacity. I have been a nurse for over twenty years during which time I have encountered many complex ethical situations regarding decision making. Working in intensive care, organ donation and now cancer care has stimulated my interest in healthcare ethics, and I am currently undertaking an LLM in Healthcare Law and Ethics.  What immediately struck me about this case was the concern and consideration that Justice Hayden gave to Mr A and his family.

Vicki Sudall

Over the course of the hearing I witnessed unwavering respect shown to the importance of P’s autonomy; the ‘principle which lies at the heart of the doctrine of informed consent’ – and which is known as Beauchamp and Childress’s de facto dominant ethical principle.  Throughout, there was an almost palpable sense of the gravity of the decision in question – and an awareness that under the s.1(4) principle of the Mental Capacity Act 2005, he could not be treated as lacking capacity “merely because he makes an unwise decision”. In clinical practice, as with this case, assessing a person’s mental capacity is not always easy.  So, whilst it may be that ‘the temptation to regard a choice you disagree with as non-autonomous is strong. The outcome of the choice should be irrelevant.’ (Brazier, M. 2016 Medicine, Patients and the Law – Sixth Edition, Manchester University Press s.3.3)

Moira Hill

As a student midwife, we are taught to promote autonomy to women and encourage informed decisions based on evidence. This includes any care that is given to them, medication that they receive and any other aspect of their life as part of the holistic care that we offer. The thought of taking a decision away from anybody about their own life and care is completely alien to me. From the very beginning it is made clear to us that our own values and opinions are irrelevant when it comes to the care that we offer women and we should support any decision that a person makes.  On reflection, this case has been extremely thought provoking for my own practice as a student midwife. It is important to me that I offer women an informed and safe way of giving birth whilst ensuring that women play a strong role in the planning and implementation of their care. Positive outcomes and the satisfaction of the care received are the main goals that any midwife can hope for. This hearing has taught me that at times, my professional opinion and the needs and wants of the women I work with aren’t always going to marry up, and at these times I will be ethically and morally tested.

Emma Rich

The parts of the hearing that I observed were a true eye opener for me, particularly as this case is very complex and sensitive

Jack Broom

As a family lawyer working in this field for 35 years, I like to think that I’ve seen a journey towards compassion in terms of the direction that family law has taken. I tend to look at my work as a family lawyer now through a prism of compassion. In some ways it’s a touchstone against which I judge situations, people and events in their lives. It’s something that I look for in the interface between our jobs and our clients. And compassion was the overriding theme of what I saw in the way that Mr Justice Hayden conducted this hearing. The facts of this hearing tugged at the heartstrings.  A young person, determined to take his own life. And what could or should we do by way of reaction?  I’m so glad that we live in a civilised society in which people actually care, and are actually employed to care. Some of the finest brains in the country gathered in that virtual courtroom to pool ideas, questions, facts and hypotheses, all aimed at the central question of what should happen next in this young person’s life.  It was a privilege to witness this, to ponder the questions of autonomy that were raised, to witness the lawyers nibbling away at what should happen next. But what most impressed me, what most made its mark, was the judge insisting on emphasising the painful life experiences that this young person has had on the journey that led him to this courtroom. This young person is someone who loves his religion, who is godly and kind, who loves his mother and father and all his relations, and yes, who therefore has so much to live for.

Simon Bruce

The question of Mr A’s date of birth cannot be settled by the Court of Protection.  That lies with the Home Office. For all of us, though, altering his ‘official’ date of birth seems the best solution.

The age assessment process of asylum seekers by the Home Office is not without controversy. The Court of Appeal has recently called the policy unlawful, as it was found that the policy failed to adequately safeguard children from being treated as adults (BF (Eritrea) Secretary of State for the Home Department [2019] EWCA Civ 872). We have observed in court the damage which this policy can cause. Mr A is now an adult, and to allow him to have his date of birth back does not change anything which would, or should, concern the Home Office. He would not become a minor or be eligible for any services or support which he is not currently eligible for. Mr A has one simple wish which, in my opinion, can and should be granted.

Adam Tanner

My own view, based only on observing the hearing and seeing nothing from the bundle, is that there is insufficient evidence to rebut the presumption that Mr A has capacity to make his own decisions about nutrition.  Any claim that he is incapacitous falls, in my view, at the first hurdle, since there is no evidence of impairment of the mind or brain.  The claim that “sub-threshold” PTSD or commitment to an “over-valued idea” is sufficient to satisfy the “impairment” criterion leaves a great many of us wide open to having our capacity challenged – all of us who have suffered trauma, rape, abuse, and all of us who hold strong values or beliefs which we are willing to fight for, and perhaps to die for.  Mr Justice Hayden asked “What is the difference between the suffragettes starving themselves for votes and Mr A starving himself for his identity?” 

I hope Mr A’s hunger strike works to shame the Home Office into respecting his identity – but if it does not, I would like him to choose to live, if he can bear to.  Not because he will have a happy future (although he may), and not for the sake of his parents (although they would rejoice in that decision) but because he has so much to contribute.  Mr A has suffered greatly and he has (so far) survived and shown himself to be resilient, determined and committed to what he believes to be right.  His qualities of integrity, compassion, kindness, persistence, and standing up for justice mean he is someone who can make the world a better place – not just for himself but for others too.  I would like to see him use his voice – which has come through loud and clear in this court hearing – not for himself alone but for others who are persecuted and oppressed.  In his conversation with Mr A early on in the hearing, Mr Justice Hayden described him, counter-intuitively, as “a lucky man” – for the family he now has, the safety he feels,  and the ‘wonderful life” he has the potential to live.  Mr A agreed with that assessment.  I would hope Mr A can find ways of using both his suffering and his good fortune to reach out and help others, demonstrating through his life and through his deeds that it is possible to survive oppression and to live a good, compassionate and just life.

Celia Kitzinger is a social psychologist specialising in decision-making about clinically assisted nutrition and hydration and a co-author of the British Medical Association Guidance (here). She is co-founder, with Gill Loomes-Quinn of the Open Justice Court of Protection Project. She tweets @kitzingercelia

Jo Beswick is a Medical Law and Ethics academic and author at Staffordshire University. She tweets @DrJoBeswick

Jack Broom is a first year law student at Essex University. He tweets @broomie_23

Simon Bruce practises family law at three law clinics – Hammersmith and Fulham Law Centre, Dads House, and East Greenwich Legal Advice Clinic – and at Farrer & Co LLP.  He tweets as @simonbrucelfc

Moira Hill Following a long nursing career, she now uses her professional & personal experience in death, dying and grief in her role as an End of Life Coach. She is also writing a book to help people who are facing the death of a loved one. She tweets @moirahill67   

Emma Rich is a student midwife. She tweets @emma84rich

Vicki Sudall is an Army veteran and colorectal nurse in NHS. She tweets @vickisud76

Adam Tanner is a PhD researcher in Mental Capacity law at the Open University. He tweets @AdamRTanner

3 thoughts on “Hunger Striking for his Identity: Autonomy, Capacity, and Justice

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