A life worth living? The importance of advance decisions

By Izzy Grove, 26^th March 2021

When I found out that there was a chance to observe Court of Protection hearings as part of the Open Justice Court of Protection Project, I jumped at the opportunity. My initial feelings were of excitement at the chance to be a fly on the wall in proceedings of such significance. 

I will admit that, before enrolling on the Consent to Treatment module as part of my LLM degree at Cardiff University, I knew little of the Court of Protection and its function. I had sat in on criminal, civil and family proceedings, but the Court of Protection was new territory for me and I wasn’t sure what to expect.  

Very quickly, my sense of excitement subsided as I found out the facts of the case. What I would be observing was, in its starkest terms, a decision between life or death. 

The case

The court had to decide whether treatment in the form of clinically assisted nutrition and hydration (“CANH”) and ventilation should be continued for a young woman, pseudonymised as “Lilia” in the judgment.  Only 20 years old, Lilia was in a vegetative state following a suicide attempt. She had suffered catastrophic hypoxic brain injury. 

The case was before Mr Justice Williams and the judgment has since been published (London NHS Trust v CD & Ors (Withdrawal of Life Sustaining Treatment) [2021] EWCOP 727 (24 March 2021).

The applicant NHS Trust (represented by Mungo Wenban-Smith) was seeking a declaration that it was lawful and in the best interests of Lilia for CANH and ventilation to be discontinued and for palliative care to be provided instead. This application was supported by Lilia’s mother (and sister) (represented by Alev Giz ), by Lilia’s litigation friend (the Official Solicitor, represented by Nageena Khalique) and their position reflected the consensus of three clinicians (including the treating doctor and two independent experts). 

Withdrawal of life-sustaining treatment was opposed by Lilia’s father (represented by  Ulele Burnham) who believed that Lilia’s values were such that she would wish to preserve her life – even in these circumstances, where the likelihood was that she would remain in the vegetative state for the rest of her life (which could be decades). 

Since there was dispute about Lilia’s best interests, it was down to Mr Justice Williams to determine what was in Lilia’s best interests. Based on the evidence before him, he sought to ascertain her values and approach to life to conclude what she would want in this situation. 

The remote platform

I accessed the hearing with relative ease via Microsoft Teams – and the first thing that struck me was the number of people attending the proceedings. There were 32 people present, myself included. Prior to the hearing I had considered the impact of Covid-19 on court proceedings and whether the use of an online platform, as opposed to being in a physical courtroom, would depersonalise proceedings. However, in some ways the online experience had the opposite effect. On my screen was a collage of faces, each with their own interest in the case, many being family and friends who were centrally involved in Lilia’s life. I could immediately tell that one attendee had a personal involvement in the case, as their eyes teared up and were quickly wiped away. 

When I’ve observed in a physical courtroom I’ve been seated at the back with a view for the most part of the backs of people’s heads and I’ve often been uncertain about everyone’s identity and role in the case. Here, there was no doubt as to who was who – their names appeared against their faces on the screen. Everyone was looking straight at me. I suddenly felt right in the middle of proceedings, and worried that I was intruding on the very personal matter of another family’s tragedy. It suddenly felt odd and uncomfortable to be witnessing this decision concerning the most significant right of all, the right to life, while sitting on my bed in my student house. These feelings subsided as the hearing got underway and my attention turned to trying to understand the medical complexities of the case. 

Hearing the medical evidence: Smiling and music lose all meaning

Two expert witnesses were called to give evidence: first, Dr Hanrahan, an expert consultant in Neuro-rehabilitation, who was approached to provide a second opinion, and second the treating clinician (whose name we are not allowed to make public under the terms of the transparency order).  

Initially I felt overwhelmed by the technical medical terminology and what it meant. However, as Dr Hanrahan settled into giving his evidence it was clear this was something he had done many times before. He was careful and selective in his choice of words and methods of explanation, making it understandable for the lay person. His professional opinion was Lilia would most likely remain in her current vegetative state, with no awareness and no arousal to stimuli. Her behaviours are automatic and primal responses, such as sweating and a high heart rate. She is not feeling the emotion of pain but rather just showing reflexes to it. 

I found it quite hard to listen to what Dr Hanrahan said about her facial movements. He said that facial movements often occur in a person in a vegetative state without this being intentional, or a reflection of anything they are feeling.  If Lilia smiles that is not necessarily indicative of an emotional reaction. Seeing a smile on the face of somebody you love when they are unconscious would automatically give me hope that this was a sign of communication or increased consciousness. Yet, I learnt from Dr Hanrahan the harsh reality that this is not the case.  A ‘smile’ can be simply an automatic muscle reaction. With this understanding, a smile seems to lose all meaning. 

Dr Hanrahan went on to expand upon the severity of Lilia’s situation through a distinction between the concept of ‘listening’ and ‘hearing’. He said if we consider the ear as the hearing organ and the brain as the listening organ, in Lilia’s situation there is virtually no connection between the two. So, while she may be able to hear, she cannot truly listen. This was significant, as it had been established that one of the things Lilia valued in life, and which gave her great pleasure, was listening to Japanese music. The consultant’s explanation indicated that she could no longer receive any pleasure from this activity.

I wondered, is it truly a life worth living if you are no longer able to access pleasure or happiness? Dr Hanrahan made it clear that in the very unlikely circumstances that there was any minimal improvement, the only increased awareness she would likely have would be of the pain and discomfort she was in.

Second, Lilia’s treating clinician gave evidence that was in essence the same as that of Dr Hanrahan – while also noting that Lilia’s condition had in fact worsened recently, and there was now sign of infection.  She expressed the clear and unequivocal position that it was the clinical consensus of the team at the hospital that the continuation of treatment could not be justified as being in Lilia’s best interests.  

Counsel for Lilia via the Official Solicitor asked what the process would be if the court were to determine it was in Lilia’s best interest to continue to receive ongoing treatment. The treating clinician answered that in honesty she did not know; this was not a position that the hospital had ever found themselves in before. Of course, the court cannot force clinicians to provide treatment which they consider to be unethical. This was a dilemma which I had not previously pondered and it made me realise that the outcome of this case also had the potential to put doctors in a rather difficult situation, going against their own ethical and moral beliefs. My focus so far had been completely on Lilia, not on the doctors’ role. 

Hearing from the family: Parental conflict

This was evidence I braced myself for.  In stark contrast to the factual and objective medical language, it was time to find out about Lilia as a person and what she would have wanted for herself. 

Her father spoke first. Knowing that he opposed the position of the other parties, in that he wanted CANH to continue, I was expecting an emotional plea to the judge about why he thought there was a prospect for improvement and why his daughter’s chance for recovery should not be dismissed. However, this was not quite the case. 

I was struck by how composed and well-spoken he was, considering the situation. If I had been in his position, I am sure I would have been a blubbering mess. His position was that Lilia gave great value to the life of other living creatures and animals, regardless of their level of consciousness and that she would want the same values to be applied to her in this situation. He thought she would appreciate the chance to have the sensation of holding hands and sharing love and companionship with others again in the future, even though she may not have the cognitive function to recognise this. His view was that as we do not know what she is feeling or thinking inside, he wanted to give her the benefit of the doubt. This was difficult to hear, especially in light of the previous medical evidence which made it clear that this was highly unlikely to ever be the case. I cannot imagine the grief that he was feeling – his desire to continue with life-sustaining treatment was completely understandable, but I feel this was coming from him as a father who did not want to lose his child, rather than from the perspective of what Lilia herself would have wanted. 

The central aim of Court of Protection proceedings is always to get a picture of the person’s values, wishes, feelings and beliefs – the choices they would make for themselves, and the way they lived their life.  A picture emerged of Lilia as a young woman who enjoyed music, nature, Japanese culture and wanted to travel the world. The quality of her life now was incomparable with this. This was the sentiment expressed by her mother, who said that being in a vegetative state with the inability to communicate would be, for Lilia, “a fate worse than death” – and Lilia had actually said so to her best friend (who provided written evidence to this effect). I admired her mother’s ability to set aside her own personal feelings and emotions, as she acknowledged what the doctors had said: that any happiness or pleasure that Lilia may one day be able to feel would be overcome and saturated by pain and suffering. 

My experience of the hearing

After hearing all the evidence, I had no doubt as to what Mr Justice Williams’ decision was going to be, but I still felt slightly taken aback when he said it, I had never before heard words of such importance – words which ultimately would be definitive in how somebody’s life was to end. He concluded that he was satisfied it was not in Lilia’s best interests to continue to receive medical treatment – only palliative care “with the anticipation that Lilia will then not live for more than three or four weeks”.  He added, “that, I think, is what she would have wished for”. He ended the hearing by addressing the family with “profound condolences for the awful tragedy that has confronted you”.

This experience of observing a hearing in progress operated to humanise the law for me. When discussing the law as it is in the books, it is often easy to dissociate from the fact that when it is applied in practice there is always a real, living human being at the centre of proceedings. Someone who is unable to consent to treatment. Someone who has been through trauma. Someone whose life is essentially in the hands of others – namely a judge, who they have never met, or probably even heard of. This is a situation which nobody ever envisages for themselves. 

I joined the hearing expecting to come out of it with an increased understanding and experience of the law in this area, which would complement my studies. And that certainly happened, However, to my surprise, I also gained an increased personal awareness of the importance discussing these often ‘taboo’ and topical subjects. After the hearing concluded, I sat and thought of all the various scenarios which could result in me ending up in a similar situation. It made me think about things in a new light and my head was full of questions. Recently I avoided collision with a car by the skin of my teeth, as it ploughed ahead at full speed while I was on a pelican crossing. What if the car had hit me and I had been seriously injured? Would my parents know what I would want to happen to me in such a situation? Did I even know what I would want to happen to me? 

One thing I knew for sure is that I don’t want my parents to be in a situation like Lilia’s, where there was room for uncertainty and dispute. This was a case dominated by the unknown: it was unknown what Lilia felt in her current state; it was unknown whether there was a future prospect for improvement (although the chances of such improvement were deemed negligible); and there was no way of knowing with absolute certainty what she would have wanted in this situation since she had never addressed it directly and her parents held different view.s 

There are many things in life we are unable to control: it is unknown what will happen to anyone in the future or when disaster will strike. But we can exercise some control.  I like to think my parents would have a good grasp of my values and the things I attach importance to in life – however, as made clear by Mr Justice Williams in this case, fleeting comments on the matter (like Lilia’s comment to her friend, while they were watching The Mentalist,  that she would not want to be kept alive in a coma) are not sufficient. They simply form one piece of the jigsaw that others then have to piece together to make a decision about you. If you want your own views about life-sustaining treatment to be definitive, you have to write them down in a formal way. So, the day after the hearing I began the process of making my own Advance Decision and advance statement of values (using the Compassion in Dying template, here).

Making decisions between life or death for another person is a huge thing to do.  It can be done so much more easily if the wishes of the patient are clear.  Obviously making an Advance Decision (and advance statement) is empowering; it gives me control and self-governance over my body.  But I am making an Advance Decision for myself primarily for other reasons – for the benefit of those who would otherwise have to make decisions about me.  Making such a significant decision on behalf of others, and being involved in court hearings,  is a huge burden and one I would not want to inflict upon my family, especially when I can so easily relieve them of it. 

Izzy Grove is a LLM student at Cardiff University. She tweets as @IzzyGrove99

Photo by Ian Taylor on Unsplash