By Matthew Timm – 7th September 2020
I first learnt of the Open Justice Court of Protection Project on Twitter. After sending a direct message with a few questions, I received a helpful response and was ready for my first hearing. Fortunately, Mr Justice Hayden (Vice President of the Court of Protection) was sitting the next day. After emailing the court, I received a Microsoft Teams link to join the hearing (Case Number 13635522 on Monday 17 August 2020). I waited in a virtual waiting room for around an hour (apparently due to technical problems with getting the video-platform working satisfactorily) before being admitted to the virtual court, where the clerk asked me to turn off my camera and microphone. Counsel then proceeded with introducing the case, which was being heard on the “Urgent” list during the court vacation.
The issues before the court
The person at the centre of the case (“F”) was described as an intelligent, articulate woman. She is 38 years old and has end-stage kidney failure. She had refused dialysis between 28 July and 11 August 2020 and was at a real risk of dying – although the week before the hearing she had accepted two sessions of dialysis and had apparently agreed to another scheduled for the afternoon of the court hearing. In the view of the applicant Trust (represented by Vikram Sachdeva), F’s continued compliance cannot be relied on, and so urgent determination was needed as to whether or not she has mental capacity to consent to, or to refuse, the treatment – and if not, whether it is in her best interests to provide it against her wishes, including restraint if necessary to enable this. F was represented by Nageena Khalique, via the Official Solicitor.
The Care Plan
All parties accepted that F lacked the capacity to make decisions regarding her treatment. This was based on the evidence of an independent expert witness who found that F did not accept that dialysis was keeping her alive and believed instead that doctors were using it to try to control her. She was diagnosed as having a “complex psychotic illness” which, in this expert’s view, meant that F was unable to understand, use and weigh information about her renal failure and the fact that dialysis was life-saving.
Mr Justice Hayden accepted the evidence that F lacked capacity relatively early in the hearing saying that he was “not really struggling with the issue of capacity” and wanted to “direct my focus on the mechanics of the care plan and the question of best interests”.
Initially, the applicant Trust providing F’s treatment sought a care plan to provide 3 weeks of dialysis using restraint if necessary, and general anaesthetic in an emergency. The Official Solicitor did not oppose restraint, if necessary, but also presented for discussion some less restrictive measures that would encourage F to comply with further dialysis so that restraint would not be necessary. Before issuing a court order, Mr Justice Hayden set out to understand why F was refusing treatment.
Why was F refusing treatment?
It was stated early on that despite the fact that F is a trained pharmacist, she believes that homeopathic remedies could cure her. But during the medical evidence in support of the care plan, it became apparent that F’s reasons for refusing treatment were deeper than a desire for homeopathic remedies. F believed the doctors treating her had malign intent. At one point, Mr Justice Hayden described her belief as amounting to the view that dialysis is “a punishment inflicted on her by medical professionals”. Both F’s mother and F’s husband (they were currently going through the process of divorce) described her refusal of treatment as part of her emotionally disturbed state. According to her mother “she’s not able to make rational decisions. She’s erratic and emotional”. She thought F was suffering from a mental breakdown. Her husband reported that F had “conspiracy theories” more generally and mentioned her views about fluoride in drinking water and food contamination. According to the Official Solicitor, F was also suffering from an “extra layer of human suffering and sadness” as she went through the process of divorce from her (arranged) marriage.
The care plan as originally filed concentrated on dialysis and on enforced compliance with it. It did not include mention of her psychological and psychiatric health. Mr Justice Hayden considered the need for psychological and/or psychiatric treatment to be intrinsically linked with the treatment relating to her kidney disease. The problem with ‘talking therapies’ is that such therapy requires active engagement – which based on F’s history with dialysis would be unlikely. The resolution reached was a dosage of anti-psychotic medication which takes 4-6 weeks to have any beneficial effect. It suddenly became clear to Mr Justice Hayden that the care plan envisaged had increased in length dramatically compared with the 3-week period originally envisaged.
Further questioning of the witnesses from the NHS trusts revealed that the proposal was for F to receive dialysis treatment from one NHS Trust and psychiatric treatment from another Trust entirely. Mr Justice Hayden was quick to require that both be dealt with by the same NHS Trust in the same hospital. All agreed that this would be in F’s best interests. Mr Justice Hayden did not approve the care plan in its present form and asked for an amended care plan to be submitted after the hearing. This will include approval for restraint, if F refuses dialysis.
How could restraint be in F’s best interests?
Having determined that it was in F’s best interests to receive both dialysis and psychiatric/psychological treatment from a single hospital, and for a dosage of anti-psychotic medication to be administered, the question remained of how dialysis would be provided if F refused it. She had, of course, recently accepted dialysis treatment on several occasions, although nobody quite knew why she had been willing to do this. One of the treating doctors suggested it was because “she doesn’t feel she has a choice”. Mr Justice Hayden noted that she seems to get on much better with female carers. Restraint might be avoided if (and when) the anti-psychotics start to work (but that will take up to 6 weeks) or with what counsel instructed by the Official Solicitor described as “cajoling”. In the meantime, both physical restraint and – if necessary – general anaesthetic were on the table.
Hearing from an Acute Service Manager (a registered mental health nurse by background), the three levels of restraint included in the care plan were explained. Restraint was seen as “a significant last resort” – preceded by other attempts to enable dialysis such as “therapeutic support”, “verbal de-escalation” and “verbal reassurance”. All three levels were low level restraint and ranged from a straight arm hold to something called a “finger and thumb hold” designed to prevent F from lashing out. To me, his evidence appeared rehearsed and as if speaking from a textbook. A welcome interjection from Mr Justice Hayden reminded the witness that the application concerned F’s best interests. Any restraint could only be imposed for a maximum of a few minutes. Dialysis takes several hours. The witness explained that restraint would be used for any immediate agitation to try and calm F down and encourage her compliance, though he admitted it may reaffirm her malign intent beliefs. There was also debate over the use of general anaesthesia (GA) in emergency situations – especially given that there are inherent risks to administration of GA. It was clear that authorisation of general anaesthetic was limited to specific, well-defined and unambiguous life-threatening situations (although as I didn’t see the care plan, and this was not specified in court, I’m not sure what those were).
Mr Justice Hayden noted his strong resistance to making orders restraining patients saying that it is “counter-intuitive for judges in this jurisdiction”. However, he also said that in his view, “making an order for restraint would mean it isn’t necessary. Often giving orders is all that is needed”. Whilst this logic can be followed, it appeared to me to be overly optimistic, considering F’s state of mind, to authorise restraint as a bargaining tool in obtaining compliance with dialysis. The traumatic ramifications of such restraint being carried out against F’s will sat uneasily with me, albeit I can accept that it would be the lesser evil compared with allowing F to make a decision – originating from her mental illness – to refuse life-saving treatment. My concern is that F requires regular dialysis to survive and, in principle, F could be restrained each time she requires dialysis for the entirety of the court order, currently 12 weeks. With F’s human rights in mind, every part of me does not want to order potentially limitless restraint. However, I equally want F to survive. If it follows that no other means of ensuring her survival exist, and only by ordering restraint can F be saved, then I reluctantly reach the same conclusion as Mr Justice Hayden.
Where did F’s wishes fit into best interests?
We did not hear directly from F herself in the court. From the outset, counsel instructed by the Official Solicitor explained that F had been invited to participate in the proceedings and had said she did not want to. Despite Mr Justice Hayden expressing his wish to speak with F and advocating video-conferencing technology to allow such conversation to be in private, F turned down the proposal citing that she had submitted a written statement and did not want to speak with a stranger. She was asked again in the lunch break and returned the same answer, leading counsel to say that “it would not be helpful to, how shall I put it, labour the point”.
There was no suggestion that F wished to die. In her husband’s view, F’s recent compliance with dialysis on the last occasion was as a result of his taking her children (whom she “loves dearly”) to visit. Mr Justice Hayden clearly found this statement powerful and compelling evidence that F did not want to die. It seemed that she lacked the capacity to understand that not having dialysis would result in her death, despite the fact that she has “end stage” renal failure. According to Mr Justice Hayden, “her delusional belief system has caused her to disconnect from her central wish to live and to get better”. He authorised compulsory treatment, with physical restraint and general anaesthetic “in extremis”. He saw these measures as “necessary and proportionate because it is necessary to save the life of this still young woman who has much to give and indeed much to receive”.
The wishes of F were clear – and expressed in two handwritten letters to the court (which I of course could not see and which were not read out). She does not want dialysis. She does not accept that it is life-saving. The most difficult aspect of this case is that F requires ongoing and regular treatment. Restraint was authorised for an unknown number of occasions in the 12-week period following the hearing. Moreover, it was acknowledged that imposing restraint would reaffirm F’s delusional paranoid belief system (that doctors are trying to control her) and likely inhibit the progress of her psychiatric treatment. To override F’s wishes without hearing directly from her (since she declined to participate) was harrowing to observe and it somehow felt like the wrong conclusion. Having said that, F has a mental illness from which she can recover. She loves her children. She does not want to die. She ought to be saved. I have sympathy for those responsible for determining best interests in circumstances as difficult as these. Each competing factor pulled me in a new direction and proved illuminating to witness. In conclusion, and with all things considered, my discomfort with the authorisation of restraint in this case is ultimately lessened considering that no other means exist for ensuring she gets treatment, and on the basis that F ought to be kept alive. Indeed, my guiding light is the optimism held out by Mr Justice Hayden that F will go on to lead a fulfilled and loving life.
Matthew Timm is an aspiring barrister who has just started the Barrister Training Course in London. He has experience working for an NGO and is interested in Human Rights. He tweets @matthew_timm