Serious Medical Treatment and Restraint: A young woman with HIV

By Daniel Clark, 25th July 2022

This case (COP 139622855) was heard before Mrs Justice Artbuthnot as an “Urgent” application at 10:30am, on Tuesday 19th July.

I asked for the link to observe the hearing late on Monday night, and received the link at 8am Tuesday morning. This was a refreshing change to having to send repeated requests, and allowed me to ensure I had everything I needed prior to the hearing. 

I requested a copy of the Transparency Order, which I did not receive (though Celia Kitzinger, who observed the first half hour of this hearing, did receive it). The key restrictions in the Transparency Order were explained verbally at the start of the hearing. Unfortunately, despite requesting them, I also did not receive Position Statements from either parties. This is unfortunate as it would have allowed me to better understand P, and the decisions to be made.

I chose to observe this case at random as (characteristically of hearings listed in the Royal Courts of Justice) there was no information available as to what matter was before the Court. This is a great shame as I believe more people may have requested to observe the hearing if its content matter (in this case, serious medical treatment) was made known. To observe a Court of Protection hearing can be educational, and it would improve the transparency of the Court if there was a more concerted effort to ensure that information about the issues before the court was available in advance on the daily cause list.

This hearing was particularly technical at times, and concerned multiple medical conditions and treatments. I am grateful to Conrad Hallin, of Serjeants’ Inn Chambers (Counsel for the applicant NHS Trust) for acknowledging the presence of observers, and for providing a detailed background of the case. I have tried my best to make the medical information as clear and concise as possible, and have chosen to focus here on two particular issues that stood out for me in observing this hearing: the extent to which P was (or wasn’t) involved in the hearing; and the question of restraint.

It is worth noting that P’s family (her aunt and brother) were not present but that they have expressed support for the proposed treatment plan at a previous best interests meeting. 

Background to the case

At the centre of this case is a 17-year-old woman (P), born overseas, who is living with HIV. It is believed she acquired HIV vertically at birth, and her mother died when she was young. P has been raised by her grandmother in this country, and in recent years it appears that she has been looking after her grandmother, who is now elderly with health issues of her own.

P requires consistent and regular antiretrovirals to keep HIV “at bay” but “consistent compliance hasn’t happened in the community and in recent times P has suffered a deterioration of her condition^[1]”. 

In May, P was admitted to hospital, complaining of headaches, vomiting, and a general feeling of being unwell. It transpired that “she has been inconsistent with her antiretrovirals” since last year, and possibly stopped them altogether in January. Whilst in hospital, she was diagnosed with Progressive Multifocal Leuko-encephalopathy (PML), which is a neurological condition in which a virus targets the cells that make myelin. It has affected P’s brain, causing cognitive difficulties and particularly damaging her short-term memory. Her capacity to consent to treatment has been assessed on a number of occasions in hospital and each time she’s been found to lack capacity due to impairment in her cognitive functioning.

The treatment for PML is sustained re-introduction of antiretrovirals. However, a possible complication of this is Immune Reconstitution Inflammatory Syndrome (IRIS). This occurs when a person’s immune system begins to recover from immunosuppression but responds to a previous infection in an aggressive way. Paradoxically, this makes the infection worse. It is feared, as a result of a deterioration in P’s condition, that she now has IRIS. This needs to be confirmed via MRI, so that steroid treatment can begin. Without treatment, the condition “could be damaging her brain further”. However, although P has previously agreed to the idea of an MRI in principle, clinicians have tried unsuccessfully a number of times and found that P is “incapable of seeing it through”. This is because “she doesn’t tolerate at all well any injections or cannulation”, which is needed for the MRI contrast. Without treatment P’s prognosis is poor, and she may only live for another year. 

The applicant Trust has brought proceedings for orders to allow the MRI scan to be undertaken under a general anaesthetic – with physical restraint and sedation if necessary to provide the anaesthesia safely. 

It took a while for the point of contention between the applicant Trust and the Official Solicitor (represented by Parishil Patel of 39 Essex Chambers) to become clear. 

Both parties agreed that P lacks the capacity to make the decisions before the Court. Both parties agreed that it was in P’s best interests to be administered general anaesthetic for the purposes of having an MRI scan. During this period, a PICC line would be inserted so that some medication could be administered to her, and bloods could be taken. Both parties also agreed that it was in P’s best interests to have a PEG inserted, so that she can receive some nutrition and her HIV medication (which cannot be administered via a PICC line). The point of contention was the timing of the procedures. 

The MRI and insertion of the PICC line could happen as soon as Friday, when a specialist clinic is held. A clinician who can insert the PEG, however, is not available until next week. The position of the Official Solicitor is that it is least restrictive, and “less risky”, for all of this to happen ‘in one go’; that is, be administered general anaesthetic once, and all three treatments be given. The applicant Trust argues that diagnosis and treatment of IRIS is urgent, and the MRI cannot wait until next week.

The involvement of P

P was present on camera at the start of the hearing – a young, slender woman, in a hospital bed propped up against the pillows, and at one point snacking on something (dried fruit and nuts?) from a tub. She was being supported by a member of her healthcare team, who was holding her hand. 

Parishil Patel referred to her presence (“P is with us”) at the beginning of the hearing.. However, it didn’t seem to me that P’s participation in the hearing was managed at all well.

It transpired that the consultant was to give her evidence in the same room as P, who had just listened to Conrad Hallin providing an opening summary of the case.

Arbuthnot J observed that P seemed to be becoming distressed.

Consultant: She’s a little bit bewildered by the conversation that seems to be about her but isn’t really including her.

Judge: I don’t want to exclude her but if she’s going to be harmed by it [hearing the evidence], would it be better to proceed without her?

Consultant: Her main question is ‘what do you want from me’, and if she was able to respond to that it would be helpful.

Parishil Patel intervened to say that P had expressed a wish to attend the hearing and to speak to the judge in court: “maybe she can do that and then we can carry on without her”.

Judge: We’re all talking about you and what treatment you should have. What treatment would you want?

P: Nothing at all

The judge then asked P if she would like the consultant and laptop to move to another room, to which the answer was yes.

This brief exchange struck me as quite surprising. It had already been established that P is living with a significant cognitive impairment which affects her memory. I feel it would have been beneficial for the judge, or the consultant, to reiterate (for P’s benefit), what was happening, and what sort of decisions were going to be made. She then may have had something to offer. 

Furthermore, Arbuthnot J said that the hearing may return to P’s bedside if there’s anything she wanted to know from her but this never happened. As a result of these two decisions, P’s opinion was never really heard. 

In fact, P’s voice didn’t really shine through in this hearing at all.

It was reiterated on multiple occasions that P has a history of not taking her antiretrovirals, and (according to her consultant) will “delay and procrastinate” taking them whilst in hospital. It was not discussed in the hearing why P has been so resistant to taking her medication, which is all the more surprising given that one of the purposes of inserting a PEG was so that she could be given her antiretrovirals consistently. The Mental Capacity Act (2005) stipulates that those making a best interests decision should consider “the person’s past and present wishes and feelings” (s.4(6)). It struck me as rather odd, therefore, that time was not given to P’s long history of aversion to medication.

Although it was not raised orally in the hearing, Celia Kitzinger notes that the Official Solicitor’s Position Statement (which I don’t have) records that P has had the treatment explained to her on a number of occasions and is unable to recall the conversation when asked about it shortly afterwards, and is “unable to articulate what cause[s] her alarm or upset about the treatment”. She has also “consistently expressed the view that she does not wish to die”. 

After the consultant left P’s bedside and had moved to another room, she was affirmed as a witness, and questioned by both counsel.

Restraint

During Conrad Hallin’’s questioning of P’s consultant, it became clear that nobody knew whether P’s antiretrovirals were working because they have been unable to take bloods. The importance of this became clear during examination by Parishil Patel. 

In sum, it is important for blood tests to be carried out to see whether P’s CD4 count is rising. If it is, her antiretrovirals are working, and would therefore indicate that it is IRIS that has caused her cognitive deterioration. If they have not, it would indicate that her deterioration is a result of the progression of PML. 

If the medical team had this information, they could start steroid treatment for IRIS and delay the MRI until it was possible to insert a PEG on the same day. As they do not, and because P is continually declining, the consultant believes it is extremely important to go ahead with the MRI on Friday rather than delaying it so that it can be done at the same time as the PEG insertion. To begin steroid treatment without some confirmation could, the consultant explained, “precipitate psychosis”, which would make the eventual MRI very confusing to interpret.  

Parishil Patel then made a suggestion that I found quite disturbing. After clarifying that P may not accept an oral sedative ahead of her MRI, and therefore require an intramuscular injection for which she would have to be restrained, he explained that his job is to “see the least restrictive path”. Therefore, he suggested, would it be the “least restrictive option” if P was physically restrained for the purposes of blood taking, and then the MRI and PEG insertion can all happen on the same day. The consultant’s response was quick: “It doesn’t appeal to me because it would be traumatising for her and the staff”. There is an increased risk of needle stick injury, and could involve half-an-hour of physical restraint. She concluded that “having been in a similar situation before, I don’t relish it”. I absolutely understand why she took this position. 

Unfortunately, during the course of my work in health and social care, I have physically restrained people. I say unfortunately because physical restraint is far from pleasant. It’s physically and emotionally demanding, and consists of at least two people forcing somebody to do something that they do not wish to do (because they are a danger to themselves or others). During restraint, I’ve been kicked; I’ve been spat at; I’ve been seriously verbally abused (the most disturbing of which occurred when I was called a paedophile, which was followed by a long description of the abuse of children). The people I have restrained have been extremely angry but, at times, have cried. A lot of the restraint I have been involved with has been for the purposes of supporting somebody with their personal care following incontinence, and this has been re-traumatising for people who have experienced sexual abuse. As a trainer on a recent course put it, a room where restraint takes place ‘is a room full of trauma’. 

One type of restraint I’ve never been involved with has been restraint for the purposes of blood taking. This is because it’s relatively rare. It can be dangerous for all parties, and is usually reserved for when there is a desperate need to take somebody’s blood. In this case, no such desperate need was evident. With the insertion of the PICC line, under the same round of general anaesthetic as when the MRI takes place, nursing staff will be able to take blood with ease, and assess the efficacy of P’s antiretrovirals. I imagine the Position Statement might have shed more light on how and why the OS came to suggest this. Unfortunately, as I did not receive the position statement, I can only write about what happened in the hearing.

In this case, restraint may be necessary to give P a sedative through the intramuscular route, if she does not accept one orally (or, it is not effective). However, this restraint would take “a matter of seconds”, and would be much less traumatic. To put P through a traumatic (and potentially prolonged) restraint, when it could be wholly avoided, would not be the least restrictive option at all. If anything, it was the most restrictive option put on the table. I’m relieved that P’s consultant was so firmly against it but also shocked that it was proposed as a viable option – especially when you consider that, if P’s CD4 count is high enough, she would still potentially have had to be restrained again for the administration of sedation. In my view, one possible restraint is better than one definite restraint and one possible restraint. 

Some cause for hope

Towards the end of giving evidence, P’s consultant informed the Court that “she [P] may have capacity for neuro-regeneration” following treatment and (possibly) neurological rehabilitation. This was a glimmer of hope in an otherwise sad story, and was well received.

During final submissions, Conrad Hallin asserted that the Trust’s “submission remains as was” and Parishil Patel said “the evidence is clear all three treatments are necessary and in her best interests”. Therefore, as it is not practically possible for all three treatments to occur at the same time, “we can agree that these orders should be made”. 

Arbuthnot J was in agreement, and made clear that the Order should “cater for” the possibility of P regaining capacity (which included instructions on accommodating a further capacity assessment as and when it seems to be appropriate). It was also clear that, should an appropriate clinician become available on the day of the MRI, the Order did not stand in the way of the PEG being inserted on the same day. 

The possibility of P regaining capacity is a very real one, and I sincerely hope that P goes on to live a fulfilling life.

Daniel Clark works for the NHS as a healthcare assistant. He is also deputy director of Backbench: an unaffiliated, open platform, blog that publishes a range of articles about current affairs. In October, he will start a PhD in the Department of Politics and International Relations at Sheffield University on the changing meaning of old age. He has written and contributed to previous blogs for the Open Justice Court of Protection website including: “Challenging behaviours? The importance of language” and “The politics of the pandemic in the Court of Protection” He tweets@DanielClark132.

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^[1] _{We are not allowed to audio-record hearings.  All quotations from the hearing are taken from contemporaneous notes and are as accurate as I can make them but are unlikely to be entirely verbatim.}