“She is religious and she is a fighter”: Three perspectives on best interests decision-making in the Court of Protection from ‘Compassion in Dying’

By Jemma Woodley, Zach Moss and Upeka de Silva, 23rd June 2022

Editorial Note: The judgment has now been published: Imperial Healthcare NHS Trust v C & Ors [2022] EWCOP 28

We are three people who work for Compassion in Dying, a national charity that supports people to make their own decisions about end-of-life care in line with the Mental Capacity Act 2005.

We promote the rights of capacitous people to document their care preferences using Advance statements, Advance Decisions to Refuse Treatment and/or Lasting Powers of Attorney for Health and Welfare. 

We also promote the rights of incapacitous people to be treated (or not to be treated) in accordance with these documented preferences or in their best interests taking into consideration their past and present wishes, feelings, beliefs and values. 

Sadly, our free nurse-led information line often receives calls from individuals and family members anxious about not getting the treatment and care that is right for them and their loved ones, in line with the law. 

We watched a two-day hearing before Mr Justice Hayden, in person, in the Royal Courts of Justice on 15thJune 2022 (Jemma) and 16th June 2022 (Zach and Upeka).  

The hearing (COP 13933678) concerned LC, a 77-year-old woman who had suffered hypoxic brain injury following cardiac arrest (and eight cycles of cardio-pulmonary resuscitation) in hospital in January 2022. The Trust and two independent external experts report that LC is now in a prolonged disorder of consciousness.

The judge had to consider whether LC’s wishes were being properly taken into account in continuing to give her mechanical ventilation, and whether or not an attempt should be made to wean her off the ventilator with a tracheostomy. An application had been made by the Trust to use a tracheostomy, but the family were adamant she wouldn’t want this.

Helping to resolve disagreements about medical treatment between family and clinicians and ensuring that the person remains at the centre of the deliberations goes to the heart of what Compassion in Dying deals with every day.  

My reflections on observing my first CoP hearing, By Jemma Woodley

As I walked through the airport style security, the excitement which I had woken up with had quickly turned to apprehension. The weight of what I was about to listen to started to feel real. I felt intrusive and hesitant as I walked towards the court room. The intricate details of P’s life were about to be laid out for anyone to observe, I felt heavy with the weight of the decision which needed to be made. 

As I waited with Celia outside the courtroom, we discussed the details of confidentiality, and I was introduced to expert witnesses and practitioners. I felt privileged to be able to attend and grateful to the Open Justice Court of Protection Project. I watched as the family, lawyers from all parties and expert witnesses spoke to each other outside the courtroom, waiting for the case to begin. The court was delayed as a video had been shared by a member of the family. I watched as all parties stood around a small mobile phone, watching a poor resolution clip of LC, trying to determine whether she was blinking in response to the family member’s request or whether this was merely a reflex. My apprehension eased. I no longer felt as if I were the only one unprepared to enter the hearing. 

As the hearing started, I was immediately grateful to Mr Justice Hayden. He ensured a detailed summary was given before proceeding with the case. As the opening summaries began, I was taken aback by the sheer number of interruptions from the judge. It was clear to me he was disappointed with the sizable amount of medical jargon which was used. I was confused, I don’t have a clinical background and therefore the jargon which was used was unfamiliar and perplexing. I can only begin to imagine how this language on top of the emotional weight of the impending decision must have felt for LC’s family who were in attendance. I was grateful for Mr Justice Hayden’s interruptions, calling the practitioners out for their use of medical terminology. He stated, “When we have lay people and family members in court,  it’s just helpful to explain”.

I was also pleasantly surprised with how the judge interrupted the proceedings at one point to usher two family members to the front of the room. As we had entered the courtroom, the family looked fearful and had taken a seat on the back row. With Mr Justice Hayden moving them directly to the centre of the room, to me, this felt almost symbolic. By physically placing LC’s family at the centre of the room, the importance of LC and her family’s wishes to the decision being made were emphasised.   

As the hearing proceeded, I couldn’t help but watch Mr Justice Hayden attentively. It was evident how heavy the weight of this decision was on his shoulders. A decision to move LC to palliative care was clearly a serious one. I was reminded of how traumatic the death of a loved one can be. Mr Justice Hayden asked the doctors who were giving evidence about their experience with Post Traumatic Stress Disorders following Intensive Care. He wanted to know about the repercussions for LC, if she were aware of her surrounding, and for the family. I was grateful for the time he took to listen and understand this. 

A final reflection I had was a personal one. At Compassion in Dying, the majority of our callers want support to refuse treatment they don’t wish to receive. We support and advocate to help treatment come to an end, for those who wish it to. This case challenged my personal values and previous experience. The family emphasised throughout the hearing how important sanctity of life was to LC and how strongly they knew she would wish to continue fighting and receiving every treatment possible. This was not something I had personally come across in the six months that I have been at Compassion in Dying. I am grateful for the opportunity to better understand the breadth of people’s end of life wishes and it served as a good reminder that my own personal values should always remain personal when supporting people to express what matters to them. What mattered in this courtroom was not my own feelings (or Mr Justice Hayden’s or anyone else’s) but what was important to LC and what she would want to do. 

This thought process was something that was subsequently emphasised further by attending the Judging Values and Participation in Mental Capacity Law Conference this week. I listened to the likes of Baroness Brenda Hale and Sir Mark Hedley speak openly about how they negotiate their values in decision making. I was struck by the responsibility that judges bear. 

I was sorry not able to attend the second day of the hearing, but I am very grateful to the Open Justice Court of Protection Project for the opportunity to attend on the first day (and support in doing so) and I look forward to attending more hearings in the future. 

Dieu et mon droit –> God and my right, By Zach Moss

During the hearing, I kept wondering what the French writing meant (Dieu et mon droit) which adorned the The Royal Coat of Arms above the judge’s head in the courtroom. It translates to “God and My Right” which would prove fitting given the eventual judgment in this hearing. Mr Justice Hayden, who was presiding over the case, seemed to signal that his decision would rest on what weight to give LC’s faith.

My first time observing a case

As someone who has followed the Open Justice Court of Protection Project for some time, it was exciting to attend the Royal Courts of Justice on Thursday 16th June 2022 to view an in-person hearing. 

Through my work at Compassion in Dying I’ve often heard about how some people might theoretically end up in the Court of Protection after a disagreement or dispute about a medical treatment, but to actually be there watching a case unfold was memorable. It may seem silly to say, but the responsibility of those involved in the case and that of the judge to ultimately make the decision was palpable.

The time to be heard

Day two of the hearing (which I attended) was entirely about LC. I’m not quite sure what I was expecting in terms of process and questioning – but hearing Mr Justice Hayden probing LC’s three sons and daughter, I was struck by the incredible thoughtfulness of his approach. It felt to me entirely unconventional – but entirely appropriate. Hayden J after all, as he mentioned a few times, was the one ultimately having to make the very difficult decision. 

I got the sense that the two family members present, and the two others who joined remotely by phone and video were nervous. Entirely understandable, given the context and intimidating environment at the court. Looking on from the viewing gallery though, I was seriously impressed with the way Mr Justice Hayden was able to put the family members at relative ease. The questions he asked of them were deliberately open, authentic and not in any way tokenistic – he allowed LC’s children to build a rich picture of their mother. These weren’t questions to ‘break the ice’ or to set the scene – they were critical to the process, to in effect bring LC into the courtroom.

            “Who was LC closest to?”

            “What was her favourite food?”

            “Did she join in when you watched the football? Who did she support?”

There was a memorable moment (amongst many) which had the courtroom break into laughter when Hayden J was speaking to LC’s daughter JC on the phone. She had, I think, prepared a list of things she’d wanted to talk about – and each time the judge thought she’d finished, she’d say “oh and one more thing…”. There was a level of desperation from JC getting her chance to convey her feelings as clearly as possible but the time, patience and space Hayden J was able to give her will stay with me for quite some time.

There is an undeniable sense of dignity in this process: the family is there in court to be heard. This is surely what the Court of Protection is about– this perhaps being the first time a family feeling able to tell their story. 

You could feel that this detailed discussion and exploration of LC’s wishes just simply had not occurred before – for whatever reason.

Reflecting on this, it feels like this forensic and compassionate approach is entirely missing from the medical discussion. I fear that even with the best intentions, there is no space for this in an NHS under immense strain.

I even at one point imagined whether a world where a medically trained Mr Justice Hayden was the potential answer? Do we perhaps need to turn medical training upside down and start with social first, and medical second?

The role of religion 

It was clear from all the witnesses that LC’s Christian beliefs played a significant part in LC’s life and that, because of this, she’d be “up for the fight”. Even faced with some bleak medical evidence about what this ‘fight’ might mean, each of the children in their own way believed she’d want attempts to be made to wean her off the ventilator despite the poor odds of success. I thought Mr Justice Hayden was very careful to properly define what ‘success’ in this case might mean, both medically and also framing it in terms of what LC would not return to, as it seemed the children still clung to some sort of hope of a fuller recovery than the medical evidence suggested.

Ultimately, Mr Justice Hayden concluded LC would “be up for the fight.” She was, and had been, a woman of conspicuous courage. Given the all the medical evidence, I thought it touching for him to say that LC and her family would need that courage in the weeks ahead.

Reflections

My overall feeling is that I am impressed. Mostly I think by the compassion, skill and forensic ability of Mr Justice Hayden to place LC in the heart of the courtroom for 2 days and to decide what is in her best interests. 

I think I am convinced – at least on the basis of this one hearing – that the Court of Protection provides a way to settle disagreements about medical treatments. 

I am left with some questions though. Mr Justice Hayden in his (oral) judgment said this case should have been brought to court by the Trust far sooner – it is only in court where LC will “find expression”.

This left me wondering why exactly it hadn’t. It also made me realise how important the work of the Open Justice Court of Protection Project is.

I wonder how both sides of this hearing reflect on what has happened: How does the family of LC reflect on what they’ve gone through? They may have got the outcome they were seeking, but their experience is sadly not over, and it sounds as if their relationship with the Trust is perhaps irreparably broken. 

I wonder too how the Trust will reflect on this? There will be many people who were involved, but how do they perceive these cases in the Court of Protection? Perhaps as a headache or a cost? How do the clinicians reflect on what has happened – does it make them more fearful of medical litigation? Or do they view it as a practical, compassionate option to work through medical disagreements for their patients and their families?

The perception of the Court of Protection and these cases is important. For us working at Compassion in Dying, we often hear from people and families with concerns about medical treatments and potential disagreements . We need to know how we speak about the Court of Protection as a genuine option. How might we de-mystify the process?

I am very much looking forward to observing another hearing.

 “It is because she matters that we are all here”, By Upeka de Silva 

Thanks to the Open Justice Court of Protection project, I had observed hearings remotely before (blogs hereand here) but to be in the Royal Courts of Justice; in the presence of Mr Justice Hayden; discussing decisions at the end of life, a topic I feel passionately about, was particularly meaningful.

After what was reported to be an anxious and stressful first day, day two was about bringing LC into the court room through the evidence of those who knew her  – the very essence and value of the Court of Protection. 

Mr Justice Hayden had requested to hear first from M, one of LC’s sons, because he said he had observed how, unlike the other brother in attendance who had seemed more upset and agitated, M appeared to have been engaging more fully with the previous day’s discussions.  I was in awe of his ability to make such an astute observation during what must have been an intense day of deliberation.

Guided by Justice Hayden’s thoughtful questions about what LC’s life was like and his acknowledgement that there will be “very few occasions in life when you are called up on to assist in something as important as this,” LC’s three sons and daughter brought LC into the court room. We learned about LC’s devotion to her family and faith, love of cooking and soap operas, her support for Liverpool FC, and her work for the NHS delivering the very equipment that is keeping her alive. 

I wondered if any of her clinical team knew this about her. Would it have helped in their decision-making? Or is the Court of Protection the only place where the “protected party’s” voice finds expression”?

Honesty and respect

Callers to Compassion in Dying have told us how appreciative they are of clinicians taking the time to engage with them honestly and respectfully about a loved one’s care. Equally, we receive regular calls from family members desperate for support because they are being excluded, dismissed and patronized by health and care professionals when they have tried to engage with their dying loved one’s care. I couldn’t help but think how vastly the quality of end-of-life care might be improved if all clinicians were able to engage with family members the way Mr Justice Hayden did. 

He was brutally honest about the clinical options available; 

  • “ She won’t ‘make it through’, or she will have a minimal level of awareness and be more vulnerable to pain”
  • “Has this fighter earned her rest?”
  • “I may be protracting her death rather than prolonging her life – would she want that?”
  • “We are not contemplating a future where LC will be able to cook or play with her grandchildren”

He was incredibly respectful of the family members’ voices and their brave and honest evidence. He commended them on bringing LC to the court room in “glorious technicolor”. He reassured them that what had happened to LC “was tragic but it doesn’t eclipse her remarkable life”.

From my experience with speaking with family members on our information line, I can confidently say that this is the sort of conversation family members value having with those caring for their loved ones – and it’s often missing in healthcare settings. 

With increased focus on person-centered care and shared decision making, might this be achievable?

The decision

In an ex tempore judgment, Mr Justice Hayden concluded that the evidence was that LC would opt to “fight” and would consider it a part of her faith to do so. This meant it was in her best interests to try weaning her off the ventilator and assess her ability to breathe independently. He observed that LC was a woman of conspicuous courage and that the family would all need this courage in the weeks ahead.

While I understood this to be what the family preferred, I was left uncertain about whether the trust that had been broken between the clinicians and the family over the last few months would be sufficiently mended so as to move forward in collaboration. 

What I took away

  • A reminder that cardio pulmonary resuscitation may be ‘successful’ in restarting your heart but still do more harm than good.
  • Conversations about care preferences are invaluable. The option of a tracheostomy was not on the table because helpfully, she had clearly stated in conversations with her family that having seen a friend with one, it was not something she would wish to have. 
  • Recording these conversations in an Advance Statement and/or an Advance Decision would perhaps be even more valuable when faced with challenging choices at the end of life.
  • When there is a disagreement about what is in someone’s best interests, an application to the Court of Protection should be made without delay. Both clinicians and individuals should necessarily be aware of this avenue of dispute resolution and not be overly fearful of the court process.

Jemma Woodley is Information Support Officer at Compassion in Dying and tweets @JemmaWoodley2

Zach Moss is Digital Manager at Compassion in Dying  and tweets @_zachmoss

Upeka de Silva is a Policy Officer at Compassion in Dying and tweets @de_upeka

Compassion in Dying tweets @AGoodDeath

One thought on ““She is religious and she is a fighter”: Three perspectives on best interests decision-making in the Court of Protection from ‘Compassion in Dying’

  1. This was an interesting and thought provoking post. My first reflection was around what a sad state, that the family’s ‘voice’ was heard in court, rather than with the ‘caring profession.’

    I also felt that the judge was a remarkable man, empathetic, kind and insightful. Bringing the family to the centre of proceedings, both physically and metaphorically, is really what all of us should be doing.

    I’m not sure I hold up that standard after a long shift, but whatever the profession, esp. need to think about what patient centeredness means.

    I find that I see more and more people in their 80’s and 90’s.Finger in the air.. I think they made up over 40% of my clinic last week! It’s such an important issue.

    Thanks for the post!
    Dr Jihad Malasi,
    GP, Clinical lead MH, CYP and Maternity
    NHSKent & Medway CCG

    Like

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