Treatment escalation for a teenager in ICU

By Rhiannon Snaith, 16th March 2023

I am a PhD student at Cardiff University researching media representations of end-of-life decisions. I have previously observed a number of hearings in the Court of Protection (CoP) and have blogged about several cases (see bio). I was keen to watch this hearing as I’d learnt that it was about serious medical treatment, and as it turned out, it was different from other cases I had observed in the sense that P may have the capacity to make her own decisions, which I’d not seen in hearings that I’d previously observed. 

This case (COP 1405715T, before Mr Justice Francis) was heard in the Royal Courts of Justice, on the morning of Tuesday 14th March 2023. It was listed as a ‘hybrid’ hearing, which meant that some people would attend in the physical courtroom in London, while others would attend (as I did) remotely via Cloud Video Platform. 

At the heart of this case is ST, a young woman who has been in intensive care since August 2022 after contracting COVID-19. Prior to this, ST had numerous health problems due to a genetic mitochondrial disorder, though none that caused any neurological problems. It was only after contracting COVID-19 that ST became ill with pneumonia and was admitted to an intensive care unit and was placed on mechanical ventilation, and regular and frequent kidney dialysis. 

It seems that the primary goal of this hearing was not to determine whether treatment should be withdrawn/continued but to ascertain what should happen if ST’s condition deteriorates. Questions relating to ST’s capacity to make such decisions for herself was also raised, as well as the issues relating to her awareness of her condition and prognosis. It seems that ST’s parents had initially not wanted to distress ST by telling her about her condition, and that ST herself had expressed the view that she did not want to acknowledge it. However, it was important for all parties that ST’s wishes be taken into consideration.

The hearing

The applicant in this hearing was the Trust, represented by Victoria Butler-Cole KC. The parents were represented (pro bono, via Advocate) by Jake Thorold (they were not eligible for legal aid). Katie Gollop KC was also present as a potential advocate for ST via her litigation friend, the Official Solicitor, though she played only a minimal role in this hearing and it was decided during the hearing that she would not be taking an active role unless otherwise advised. 

Counsel for the Trust 

Victoria Butler-Cole KC, counsel for the Trust, gave a helpful introduction to the case for those attending the hearing. She explained that while ST had underlying health conditions, it was not simply her genetic disorder that had led to her current condition, but COVID-19. After contracting COVID-19, ST was placed in intensive care, has been put on mechanical ventilation and is in need of regular dialysis. Attempts to wean ST off mechanical ventilation had been unsuccessful: the doctors believe it will never be successful and that she will require mechanical ventilation for the rest of her life. Counsel also said that ST is not a candidate for a kidney transplant: “the very sad view of medical doctors that she’s now to be treated as someone who’s in the terminal phase of her underlying medical condition. A kidney transplant is not on offer. That is something the parents understand”.

The application made by the Trust was to address the question of what should happen if ST’s condition deteriorated. It was made clear that the hospital was not willing to offer certain treatments. They were not willing to offer a kidney transplant or CPR (in particular, chest compressions). These were not ‘best interests’ decisions but clinical decisions by the hospital. Counsel said they were made on the grounds of futility. For example, “If it got to the point that chest compressions were needed, there would be no prospect of her coming back to life, if I can put it in very lay terms –  or if she did, only for very short period”.

It seemed that the main issues between the hospital and ST’s parents were in determining what limits should be placed on treatments in future if there is deterioration, e.g., in relation to infection, or problem with organ function.  

Counsel for the Trust said there was a question about ST’s capacity and her ability to make decisions about her medical treatment for herself.  In order to have capacity to make a decision, a person needs to be able to understand, retain, and weigh information relevant to the decision they need to make (s. 3.1 Mental Capacity Act 2005) and then communicate their decision.  But at the time the application was made to court, ST’s parents did not want ST to be told about her condition or prognosis as it would be very distressing for her. There are also “certainly times when ST herself has expressed unwillingness to talk about very upsetting matters”. But the doctors need to know the basis on which they are providing medical treatment.  Is it because ST capacitously consents to it, or is it because it is in her best interests?  And capacitous consent can only be established if ST is given the information about her illness and her prognosis (and so is potentially able to understand, retain and weigh it).

An additional complication is that ST registered a Lasting Power of Attorney (LPA) in 2022. However, concerns were raised as to its validity as ST had just had major surgery and doctors thought she was not in a position to make such a decision at that time. Counsel added that ST was in a better condition now than she was at that time and she may now have capacity to make an LPA. 

It is important to note here that since the application was made, and since ST’s barrister was appointed (on Friday), ST’s parents no longer object to ST being provided with the relevant information. 

It was only at a meeting yesterday that ST has expressed her own views in any level of detail.  She says she doesn’t trust the doctors and believes they are making things worse. This is also the view of her parents. The doctors had told ST that she would have to be on a ventilator for the rest of her life.   Counsel said: “She was very upset by that, understandably.  She’d wanted to go home and thought she would come off the ventilator and be able to do so, and now she is looking at spending the rest of her life in hospital or possibly a nursing home if one could be found that could manage both dialysis and ventilation. This is devastating news for a [teenager] who until she got COVID was doing very well”.

According to Counsel, common ground had been reached following recent discussions between the hospital and family members trying to establish a practical way forward. It was agreed that if ST has capacity to make her own medical decisions, then everyone wants her to do that, but on the basis of informed discussions. It was also stressed that any information passed on to ST should be set out beforehand to ensure minimal distress and confusion. This was agreed upon by the hospital and the parents. As communicating with a tracheostomy is difficult, it was stated that ST would be able to communicate via writing (on an iPad), a method of communication which she had previously expressed a preference for.

It seemed imperative that the process of involving ST in discussions regarding her condition and prognosis be handled in a sensitive way, and that ST would be able to have discussions without her parents present in some cases. It may be that she has capacity to make her own decisions if she is given the information sensitively and supported to understand it. 

Counsel for the Trust concluded by putting forward three options in terms of the possible next steps:

Option 1: The hospital brings in an intensive care consultant from outside the Trust, who has no links to either ST or the hospital she is currently in and who can provide independent information to ST and her parents. In this instance, the Trust would be happy to facilitate (and pay for) this.

Option 2: Follows a similar process to option 1 but with the Official Solicitor (OS) involved. There is currently sufficient evidence (said counsel) for an interim order that ST is unable, at the moment, to make decisions as she is overwhelmed by her condition and does not have all the relevant information.

Option 3A ‘Harbin v Masterman’ order was the third option (See here). This allows the Official Solicitor to advise the court, rather than represent ST. 

“So, you are not asking me to make a decision about capacity today”, asked the judge.

It seemed not.  

Counsel stated that a discussion to discern what issues the court may need to deal with was needed.  

Counsel for ST

Katie Gollop KC spoke next. She was present as the potential advocate for ST via her litigation friend, the Official Solicitor [OS]. She acknowledged the very sensitive nature of the case and said she did not know much about it at present. She said her “instinct” at the moment was to take a step back for now, particularly when there is a possibility of a contested hearing. Additionally, she made the point that “it is not immediately obvious that ST lacks litigation capacity – especially having looked at the note of yesterday’s meeting”.

Counsel was also concerned that the way the application was originally framed was the OS giving ST information (about her illness and prognosis) that was going to be life-changing and very upsetting – purely for the purposes of giving her a capacity assessment.  This didn’t seem the best use of the time ST has left to her.  

She added that Issues regarding communication were very unclear as well. The Trust has said ST is blind while her parents said they didn’t believe this, and there was evidence in a note by ST’s nurse that says she facilitates communication by providing ST with a pen and paper. As a result, the OS is unsure of ST’s communicative ability. She suggested that an intermediary or a speech and language therapist could be involved, or that a speaking valve could be fitted to ST’s tracheostomy tube.

In summary, it may be more beneficial for the OS to not withdraw from the proceedings but to take a step back while ‘option one’ was explored. 

Counsel for Parents 

The court heard next from Jake Thorold as counsel for the parents, but there was an adjournment of around 45 minutes for him to consult with the parents before he made his submissions. This was because he had been so recently appointed and matters had been evolving so rapidly that he had not had time to take full instructions from them.  Also, ST’s mother is not fluent in English.  There was no interpreter in court for her today and her husband had taken on that role. 

When the hearing started again, the judge checked with counsel: “Are you satisfied you’ve had enough time with your clients, bearing in mind you’re dealing with them remotely and there are language issues?”  He said he was.

Counsel said that there was some upset from ST’s parents that the case had been brought to court. They had now discussed the issues with him, and subsequently with ST (during the adjournment), and they were happy for all the relevant information to be given to ST regarding her condition and prognosis. They were also happy with the proposal to bring in an independent expert, as long as agreements were made as to what the process would be in providing this information and what is told to ST. It was also stressed that ST’s parents were happy for some conversations to happen with just ST and the expert present (without their involvement) as long as nobody from the Trust was present at that time.

Counsel had also explained the Transparency Order (TO) to the parents (who had now discussed it with their daughter). Counsel informed the court that both ST and her parents “want these proceedings to take place in public and for all parties to be named”.  This clearly surprised the other parties, and the judge. Counsel for the Trust responded by stating that the names of the Trust, hospital and staff should not be made public because “inevitably there’s a risk that completely unacceptable behaviour by the press or members of the public will occur, as have occurred before in cases involving children”.

The judge was concerned and said, “once we unbolt the door, we can’t close it again”.  The judge’s view was that it would be best to keep the Transparency Order as it is and review it at the next hearing.

The last 5 or 10 minutes of the hearing were difficult to hear due to distorted sound – which was particularly unfortunate for ST’s parents: the judge reassured the parents and those attending online that discussions within this time frame were purely in relation to the transparency order.  


Three things struck me about this case. 

The first, and perhaps most obvious, was the fact that ST may have capacity to make her own medical decisions. This was striking as up until this point the cases I had previously observed did not involve Ps for whom there was any possibility of capacitous medical decision-making (because they were not conscious). The diversity of cases that come through to the CoP often stands out to me and as someone who is studying representations of end-of-life decisions, specifically for those without capacity, it is always interesting to see how the decision-making process is handled in court – including, in this case, the question of support for ST to enable her to make her own decision about treatment if she has capacity to do so.

The second thing that struck me, as has been clear to me previously, is the care and consideration taken by the judge and legal teams when it comes to P, and also their family. In this case, the judge made it clear throughout the hearing that a priority was to ensure that ST’s parents were given and understood all the relevant information, including the potential ramifications of making all information regarding the case public. It is something that I would want to be assured of for my family if I were ever in a similar position. 

The third thing that struck me was how young ST is to be facing such a challenging situation. Often, when I attend hearings, I am struck by the emotional aspects of these cases. In this case, ST is a young woman, younger than me, who not only is facing the very upsetting prospect of her condition and her prognosis, meaning she will not be able to return home, but may also have to make very difficult decisions in terms of her treatment. I can’t help but think about how I might feel in that situation. Would I want to be fully aware of my condition and prognosis? What limits, if any, would I put on my treatment if my condition worsened? They are difficult questions to consider for anyone, and perhaps especially for a teenager.

Attending hearings is always an eye-opening experience for me, not just in terms of developing an understanding of the court process and how decisions are made but also personally. In this case, it brings home to me the many devastating and, frankly, scary implications of ST’s condition, both emotionally and physically on her and her family. I wish both ST and her family well and hope that the plans developed help to ensure that she feels supported and cared for.    

Rhiannon Snaith is an ESRC funded PhD student at the School of Journalism, Media and Culture at Cardiff University. Her research focuses on media representations of decisions about life-sustaining treatment, specifically for those without the capacity to make such decisions for themselves. She has previously blogged for the Project here and here.  You can learn more about her work by checking out her academic profile. She tweets @Rhiannon_Snaith

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