Withdrawing life-sustaining treatment: Faith and Science

By Jenny Kitzinger, 25th November 2024

Update: Judgment was handed down to the parties on 11th November 2024 and is available here: https://caselaw.nationalarchives.gov.uk/ewcop/2024/68. It authorises the withdrawal of life-sustaining treatment on the basis that, due to severe and extensive brain damage. continuing treatment is not in the patient’s best interests. The daughter sought permission to appeal against this decision. The case was heard on Tuesday 26th November 2024 at 10.30am and was live-streamed and recorded. Click on this link Re: XY (by her litigation friend, the Official Solicitor). The Court of Appeal did NOT give permission to appeal. Jenny Kitzinger has written another blog about the Court of Appeal hearing: Application to appeal against judgment authorising withdrawal of life-sustaining treatment: Re XY

My interest in observing Court of Protection hearings is informed by my sociological research on Prolonged Disorders of Consciousness [PDoC] – a term used to include patients along the continuum from ‘vegetative’ to ‘minimally conscious’ states.

I’ve been researching family experiences of PDoC since 2010, shortly after my own sister, Polly Kitzinger, suffered a catastrophic brain injury. In joint research with another sister, Celia Kitzinger, we’ve been tracking patient pathways, and interviewing family members and healthcare professionals about decision-making.

We’ve also contributed to professional guidelines relating to PDoC and life-sustaining treatment (for the Royal College of Physicians and for the British Medical Association) and created online staff training, and a support resource for families.

Court hearings about treatment for PDoC patients can give powerful insights into how healthcare professionals and families navigate the intersections between law and medicine, culture and ethics.

The desperately sad hearing that I observed on 5^th and 6^th November 2024 concerned a woman in her fifties who suffered a cardiac arrest in early May 2024, which deprived her brain of oxygen and had left her in a PDoC. This case (COP 20002405) was heard before Mrs Justice Arbuthnot.

The woman (I’ve been asked to refer to her as ‘XY’) is at the centre of a strong family and community. Until her collapse, she worked hard in her job and relished a rich family and social life. She was a loving mother, sister, niece and friend – a person who loved life, was a great cook, and a woman of faith who regularly attended church. Since her collapse however (now 6 months ago), she has never regained consciousness and she remains in intensive care. The treating team, and all three ‘second opinion’ experts who looked at her case agreed that she was in the lowest level of Prolonged Disorder of Consciousness (what used to be called a ‘vegetative state’) and that there is no prospect of any significant improvement. Her clinical team had already decided that antibiotics or interventions such as a tracheostomy were not clinically appropriate and these treatments were not on offer.

The Trust responsible for her care (King’s College Hospital NHS Foundation Trust) was seeking a declaration that XY lacks capacity to make her own decisions about medical treatment – something not in dispute – and also that it is no longer in her best interests to continue with clinically-assisted nutrition and hydration [CANH] and assisted ventilation. The application was passionately opposed by XY’s family and friends.

The applicant Trust was represented by Mr Michael Mylonas KC. The patient was represented (via her litigation friend, the Official Solicitor) by Ms Sophia Roper KC. XY’s daughter was represented by Mr Parishil Patel KC.

This hearing starkly highlighted the gulf that can exist between clinicians’ and family views of a patient’s condition and it showed the ways in which family may seek to challenge expert diagnostic and prognostic assessments. It also vividly illustrates how family and friends’ approach to decision-making about life-sustaining treatment may be fundamentally in tension with the approach taken by medical professionals, including for cultural or religious reasons, and how barristers for each party attempt to address this.

I’ll first describe the medical evidence as presented on the first day of the hearing, and then describe what happened on the second day, when family members gave evidence and the lawyers presented their closing positions. I’ll end with some reflections.

Day 1: The medical evidence

The first day of the hearing focussed on evidence from three eminent medical experts with many years’ experience in intensive care, brain injury and neuro-rehabilitation. These were: Mr X (from the hospital where XY was being cared for); Professor Wade, one of the two second opinions instructed by the Trust; and Dr Bell (the additional second opinion expert instructed by XY’s daughter).

At the outset there was discussion of whether the judge had access to the medical notes – I wasn’t sure I heard right – but think there was mention of an anticipated 2000 pages of medical notes actually turning out to be 13,000 pages (which might not be unreasonable given XY has so far spent around 180 days in ICU).

Rather than go straight into this extensive medical evidence however, everyone in court was careful first to acknowledge XY as the individual at the centre of the case and make it clear that her family and friends had been, and would be, heard. Mrs Justice Arbuthnot checked at the outset how the patient should be referred to (e.g. clarifying that the name for XY used by family was actually different from the name that appeared in some medical records). Mr Michael Mylonas, barrister for the Trust, opened his introduction by describing how loved XY was, and acknowledging the large number of family and friends present in court. Mr Patel, representing the daughter, then said he’d like to introduce not only XY’s daughter but also her grandson, brother, aunt, cousin, and ex-partner as well as two friends. The judge made a point of welcoming them – throughout the hearing she also reminded clinicians giving evidence to use ‘lay terms’ and ‘plain English’ when explaining clinical findings, and seemed to do everything she could when family and friends were giving evidence to ensure they were as comfortable as they could be in the circumstances. I felt there was a clear commitment to treating XY’s family/friends with sensitivity throughout the hearing, and perhaps some hope that they might find it useful to hear the evidence presented.

The four key medical experts had provided the court with devastating and entirely consistent written testimony. The three who gave oral evidence in court explained the reasons for their clinical judgments, the tests and examinations that had been carried out, and provided further explanation prompted by cross-questioning. This included questioning around the usual issues in these cases such as how the effects of any sedation had been taken into account in assessing XY’s level of consciousness, the meaning of her behaviours, the margins of error in medical predictions and the nature of tests such as the Coma Recovery Scale – all of which were meticulously explored and unpicked during the course of the hearing.

The clinicians explained that their conclusion that XY was at the lower end of a prolonged disorder of consciousness was supported by a combination of factors, all pointing consistently towards a negative prognosis. These factors included: the nature of the initial insult to the brain; evidence from brain scans, and XY’s trajectory of change; and current presentation in terms of responses and reflexes.

Initial insult: Evidence from ambulance records showed that XY had suffered oxygen deprivation for well over an hour. There was physical evidence of this long ‘down time’ – it had damaged other organs as well as her brain. It was, said Dr A, “One of the longest cardiac arrests that I have ever encountered where there has actually been a return of spontaneous circulation” (Dr A).

Brain scans: Findings from structural and functional scans of XY’s brain carried out regularly since her injury give no hope for improvement. The last electroencephalogram [ECG] (the most recent of five) “shows no improvement” and is “profoundly abnormal”. The latest computer tomography [CT], Dr A explained “shows a deteriorating situation – with essentially shrinkage of brain; the medical term would be ‘atrophy’.” Any hopes that somehow the brain might repair or rewire itself were unjustified, given the global damage resulting from oxygen deprivation.

Trajectory since injury: The trajectory of the patient presentation over the six months since her injury was further evidence against hope for recovery. All that had happened during the first couple of months since her cardiac arrest was that her eyes had opened and she’d developed sleep-wake cycles and then there had also been a change in the characteristics of eye-opening (e.g. eye-opening to loud auditory stimuli). None of the medical witnesses thought that these changes altered XY’s prognosis. These were, the doctors explained to the court, simply characteristic of a normal evolution in this condition rather than anything to indicate improvement. The care taken with language was notable: at one point the treating clinician (Dr A), while drawing attention to the fact that such changes had also happened several months ago and there had been no changes since then, stopped himself on the verge of saying “improve” and replaced it with “evolve”: ‘Things have not continued to imp…… evolve over time’ (Dr A). The clear implication is that even if there had been a change, it would not necessarily have pointed in the direction of recovery.

 ‘Responses’/reflexes: The clinical witnesses also reported a lack of responsiveness – even to pain. The patient has a swollen and protuberant tongue and chews down on it – but although this has been distressing for staff, XY does not appear to have any pain response to this. (A special mouth guard is now used to prevent injury and regular general anaesthetic is needed to release and clean the guard). She also does not appear to respond to deliberately administered painful stimuli (such as is used in testing consciousness). The only potential marker of pain is when there is manipulation of the oral cavity and the mouth guard – when she shows increase in blood pressure and heart rate which could be explained by a “triggering of sympathetic nervous system” (Dr Bell). Movements made by XY likewise do not provide any evidence of consciousness, say doctors. In spite of the family belief that XY is now following commands at times, the tests and observations done by healthcare professionals do not support this. Family members felt that XY would move her foot to instruction, but Dr Bell said that his tests showed: “if you push the foot away, there would be backward pressure. If you pulled the foot downward, you’d get a similar backward pressure return to neutral – regardless of whether you were asking for it to be done. That is the basis on which I concluded that this was a spinally mediated reflex.” (Dr Bell)

A lot of time was spent on questions about the meaning of XY’s eyes, mouth, hand and feet movements with exchanges such as the following:

Counsel for daughter: Ms XZ (XY’s daughter) has taken videos – her mother can follow someone around the room [with her eyes] and is able to squeeze her hand…Would you consider that responsive to her environment?

Dr A: We have never been able to elicit such responses.

Counsel: But the family has reported that. Is that evidence of response to environment?

Dr A: There is a difference between what they’re reporting and what we are objectively seeing.

Counsel: Is that, in your view, evidence of XY reacting to her environment, if they’re right?

Dr A: I can’t deal in a hypothetical. We have not seen reactivity.

Counsel: Is it right to say that family, who know that person well, who have a history with that person, are able to elicit responses that doctors or nurses are not able to? That happens, doesn’t it?

Dr A: I disagree with you on that [in this case]

Counsel: So how do you explain that?

Dr A: I think what they are seeing is random eye roving.

Counsel: What about the squeezing of the hand?

Dr A: They are reflexes that are mediated by the spinal cord.

Judge: ‘Mediated’?

Dr A: The process relies on those parts of the brain that we already know have maintained function, such as the brain stem and the spinal cord. The hand movement [they describe] is independent of higher brain activity.

Counsel: They ask her to squeeze their hand, and she does it. Is that still explained by reflexes?

Dr A: I’ve not seen that response. And nobody that’s objectively examined XY has been able to elicit any such response.

Judge: When you say ‘mediated’, caused?

Dr A: Yes, caused.

One of the two second-opinion experts instructed by the applicant (Professor Wade) not only indicated that he did not think XY was responding, but said “I don’t think she has any awareness that individuals she knows are present … she doesn’t know whether a person (regardless of whether she knows them) is present or not”.

This view was supported by the third ‘second-opinion’ expert who had been instructed by XY’s daughter (Dr Bell, consultant in intensive care/anaesthesia). Although the daughter must have instructed this additional second opinion doctor in the hope that he might come up with a more optimistic view than the other experts, his findings were entirely consistent with what every other expert had found. When the Trust’s barrister asked Dr Bell “what are the prospects of XY understanding that someone is asking her to squeeze their hand and then squeezing their hand”. Dr Bell simply replied that this “would be outside all accepted medical knowledge”.

The family and friends listening in court (and the judge) could have been left in little doubt about the consensus from experts experienced in Prolonged Disorders of Consciousness in general, and about the condition of XY in particular.

Day 2: Family evidence and final positions of the parties

On the second morning, three family members (daughter, aunt and brother) testified from the witness box. The closeness of the family was very clear. XY’s daughter said: “She came to my house most days – she’s my best friend”; XY’s aunt said they’d speak on the phone almost every night: she had known XY even “before she was born” and went out with her often: “I was her basket for shopping – every time she wanted to go shopping, she’d call me”. Her brother said that his sister was like a mum to him: “the person who has always been there for me. She keeps me on the straight and narrow”.

In spite of all the evidence presented the previous day, these family members remained adamant that XY had a level of awareness unrecognised by the treating team. Her aunt, for example, said that XY had moved her mouth trying to speak to her and had held hands with the pastor when he visited. The daughter said her mother sometimes blinked or squeezed her hand on request, or lifted her feet when asked (“I’ve got videos and everything”).

Family members felt XY had already improved (her eyes open more, and she no longer needs dialysis) and “she has had a massive improvement…at first, she was lying down in coma with eyes closed doing nothing at all; now that’s not the case” (Daughter). It was clear that they would not give up on fighting for the opportunity for XY to recover: “If a person is in hospital you are meant to do every single thing, try everything possible…. I pray for her, tell her ‘don’t give up on yourself, you are a fighter, we love you, keep fighting’.” (Daughter)

They challenged the doctors’ prognostication: “only God knows” explained XY’s daughter, highlighting a story about a young boy who had defied pessimistic predictions from doctors. XY’s aunt expanded on the issue of faith from her point of view: “The doctors are scientists and religion is different. I don’t say nothing bad about them, but we see miracles work in our church. … I can’t believe what’s happened but I know we are going back to shopping in [local place] together– yes, that’s my faith” and (addressing the judge) “Give her a chance, because God is waiting to deliver her. She is a miracle girl.” (Aunt)

The idea of allowing death by ceasing life-sustaining treatment was anathema to their family culture and their faith: “She’s still here. She’s here for a purpose. It’s not for man to take someone’s life” (Daughter); “If they do what they are planning – it is like catch an animal and cut their neck while they are still alive” (Aunt). Pushed on what her mother would choose if the doctors were right, and she could not improve, the daughter replied “My mum would choose life over death. Her religion, she would never choose to die…she wouldn’t want me to give up on her. She would want us to fight for her.” (Daughter)

The final witness was a close friend of XY’s – who could not be in court but joined by video link. Her testimony focused powerfully on her friend’s unwavering commitment to her role within the family. “Her children are literally her life. I believe she would want to continue as long as possible and hold on to the hope that she can still be part of her family’s journey… Her presence, even in her current state, is a source of comfort and inspiration to her loved ones…[XY] would value any type of life that allows her to be present with her children because they are everything to her, her children and her grandchildren”. (Friend)

The clinicians listening in court, and the judge, could have been left in little doubt about the values and beliefs that informed XY’s approach to life – and what those who knew and loved her believed to be the right way forward.

In brief closing statements, the barrister for the applicant Trust re-emphasised that the expert evidence was “all of one voice” in concluding that ongoing life-sustaining treatments are of no benefit to this patient. He reiterated key medical evidence and the legal framework for the decision now to be made. He pointed out that XY had not discussed what she might have wanted in the circumstances she now found herself in and that, while her loving family had aspirations for her recovery, regrettably there was no prospect of her ever returning to them in any way that they so fondly remember her and no prospect of her gaining pleasure from their presence. “In those circumstances, the applicant asks that the court makes the declaration in the form sought.”

Counsel representing XY’s daughter went next. He did not dispute the strong medical evidence but instead reminded the court of the strong presumption in favour of life and that a best interest analysis must consider what XY herself would regard as meaningful. “Witnesses who know her”, he said, “believe that she is still present. It is too early to give up on her… Not because they don’t understand the bleakness [of her situation] but because they believe in the power of faith, the power of miracles, God – and they say that is XY, that is the essence of who she is”. They appreciate, he said, that professionals explain her behaviours, such as hand squeezing, as merely reflex – “they understand their [the doctors’] view – but they disagree”. In addition, “If XY could choose being in her current very compromised state – they all, without hesitation, are of the view that she would choose life.” He rounded off by saying “The family are not unrealistic, they are not unreasonable. There may come a time…they would say when God chooses…but it is not now”.

Counsel for the OS presented her closing statement last. She paid tribute to the woman who “was, still is, a central part of her family”. But her position was that “XY’s family fundamentally do NOT accept the full medical evidence and believe she has improved, that she knows they are there and responds to them”. Very sadly, she said, the medical evidence refutes this, and the circumstances could hardly be more stark: XY will remain in the state she is until she dies from another event such as further cardiac arrest or overwhelming infection. She will never leave critical care which is simply keeping her alive with no prospect of improvement. With immense sadness, the OS therefore supports the application. Ms Roper rounded off by addressing the feelings evident in some family statements which suggested an equivalence between what was proposed for their loved one and actively ‘killing’ her. She signalled the difference in law between allowing death by discontinuing treatment (which is lawful in England and Wales) and an intervention to bring about death (which is not lawful – although, of course, it is currently being debated in parliament). Stopping life-sustaining interventions does not, she said, mean bringing about XY’s death but means ‘ceasing medical intervention that has halted a process that started on 6^th May”.

The judge said she would make her judgment on Monday 11^th November 2024 – although at the time of writing I have not yet been able to see a copy of this.

Reflections

In this final section I want to reflect on (a) the features of PDoC that contribute to challenges for decision-making about life-sustaining treatment and (b) the role of the court in cases like this

The challenges of PDoC in decision-making about life-sustaining treatment

This case powerfully illustrates some of the reasons why it can be difficult to reach a consensus about a PDoC patient’s condition and future (let alone a consensus about the implications this has for life-sustaining treatment).

Prognostication after brain injury can be complex for many (but not all) patients and needs to be specific to the individual. Some seriously brain injured patients make progress, sometimes unexpectedly (and sometimes this is because previously accurate diagnosis and/or appropriate care and treatment has been lacking). Prognostication can need time; clinicians talk about giving patients a suitable period in which to ‘declare themselves’ (depending on the type of brain injury among other factors). It’s also true that patients may demonstrate more awareness with people familiar to them, so it is important to pay attention to what family and friends report.

During the course of this hearing, the clinicians were very specific about the reasons for their high level of prognostic certainty for this particular patient. The quality of care given and individualised attention to her specific diagnosis and prognosis were explained. The high level of certainty was convincing. But it was obvious that family members testifying in court did not ‘agree with’ (Counsel for daughter) or ‘accept’ (Counsel for XY via the OS) this medical evidence. Part of the resistance from family members was linked to their specific culture and faith – but it also seemed to be tied up with more general features about PDoC that are relevant to many families I’ve worked with (whatever their culture/faith). I pull out four key aspects of PDoC here

1. Background information about PDoC is absent and/or distorted:

• Catastrophic acquired brain injuries come out of the blue, and relatives often have to process information while still in shock about someone being taken from them in the prime of life, and without the years of processing information about the condition that may happen with other types of disease (e.g. progressive neurological conditions).
• PDoC itself is rare, therefore people do not have a general understanding about it (as they might, say, about dementia which, however imperfectly represented, is a more common experience).
• However, they’ll have often heard stories about ‘coma’ – particularly the miracle recovery stories that are exchanged in everyday conversation and social and religious networks, as well as in the news and in films (check out this video on media representations of ‘coma’ here: https://www.youtube.com/watch?v=_hu-veDtj1w&t=55s)

2. Clinical information can conflict with family experience

• The clinical information is highly specialised and difficult to make sense of. (The care needed to try to turn the clinical information into ‘lay language’ and ‘plain English’ was foregrounded during this hearing).
• Patient presentation is confusing. What doctors are telling families (e.g. that the patient is unaware) may conflict with what families see. It does not fit with lived experience at the bedside (or media images of what unconsciousness looks like). I’ve explored this in depth in a previous blog: “Seeing is Believing”.

3. Not all injuries are the same

• The brain is very different from other organs – but people may expect brain recovery to follow the same trajectory as physical recovery. In this case it was evident that the healing of XY’s kidneys gave the family hope for the healing of other areas of damage
• Neuroplasticity allows for potential improvements in function after localised damage (e.g. from a stroke) but this cannot be extrapolated to the type of global, anoxic injury suffered by XY.
• Deterioration may not be obvious to families (as it would be with neurogenerative conditions) even though deterioration may be inevitable (in this case, for example, brain atrophy).

4. The normal evolution of patients in PDoC can feed hope of further recovery

• It is common for families to feel their relative is a ‘fighter’ simply through having survived the initial life-threatening incident and to believe that the patient has ‘improved’ simply as they stabilise physiologically.
• The evolution from a ‘true coma’ to the vegetative state (which is typical of what happens early on after serious brain injury) is often interpreted by families as progress – with eyes opening and blinking being particularly emotive.
• Finally, the person in PDoC may look relatively healthy and this can prompt optimism about the future. Indeed, I’ve had family members tell me that a patient is actually healthier than they were before. For example, if the serious brain injury is associated with the consequence of drug abuse or anorexia the person may look ‘better’ because they can no longer abuse drugs or because a normal body weight has now been achieved via CANH. This isn’t applicable to XY in this case, but I wondered whether her excellent care (in spite of difficulties such as the swollen and protuberant tongue) was giving an unrealistic impression of wellbeing.

One potential value of the hearing for the family was the thorough and skilled way these features of PDoC were addressed by the experts as they gave evidence.

The role of the court

The second element I want to reflect upon here is the role of the court in cases like this. In some ways, this hearing seemed to work really well. It was a formal and respectful forum for a thorough, open (and, of course, public) consideration of the issues. The family had the opportunity to hear from (and question) the clinicians at length about their assessment in this formal setting; and the clinicians, and judge, had the opportunity to hear from (and question) the family. Everyone contributing to this hearing showed a huge amount of care and commitment to trying to make the right decisions for this patient – and a strong sense of XY’s own values and beliefs (alongside the clinical evidence) was foregrounded in court. It may be that the court process was useful in ensuring all the high quality evidence was pulled together and also in providing assurance (to the family) that any decision reached was the responsibility of a High Court judge and that, whatever the outcome, they had fought as hard as possible for XY to have any chance of recovery and had never ‘given up’ on her.

However, I was left wondering about the pros and cons of this case coming to court at all. The clinicians looking after XY were confident that interventions such as tracheostomy and antibiotics were not clinically appropriate and not on offer. Might they not have come to the same conclusions about CANH (especially given XY’s condition six months on from her anoxic injury)? I didn’t really understand, from what was said in court, why they had not arrived at that position.

Perhaps it was because, although CANH is legally defined as “medical treatment”, for many people (clinicians as well as families) it can feel more akin to ‘basic care’. Or perhaps the stark assertion that a treatment is ‘not on offer’ feels easier to make in relation to a treatment that has not already been started – despite their equivalence in law? Or perhaps the team or the Trust (or the lawyers) took the view that it was necessary to come to court in light of some recent rulings?

A blog post by Alex Ruck Keene and Victoria Butler-Cole (“Don’t ignore the Serious Medical Treatment Guidance – but let’s be clear about what the law requires”) was prompted by a case earlier this year (GUP v EUP and UCLH NHS Foundation Trust [2024] EWCOP 3). They comment: “it is not always necessarily easy to distinguish between a dispute about clinical appropriateness (including, as a subset, futility) and a dispute about whether a treatment that is in principle appropriate is nonetheless not in the best interests of the person“. In the particular case they were examining though (which has clear factual similarities to XY) the Trust had obtained independent second opinions from two doctors and this, they suggest “is one where that dividing line has been properly tested” such that it is “likely to mean that the Trust is on much stronger ground in concluding that it does not need to go to court to get, in effect, no more than confirmation that treatment is not clinically appropriate.” That’s effectively what happened in this case too.

I wonder whether the clinical team in this case genuinely felt this was a best interests decision for XY such that they would have been willing to offer continuing life-sustaining treatment indefinitely if the court had so ruled. Or whether, on the facts of this case, the situation was such that further treatment was simply clinically inappropriate.

Postscript: The daughter sought and was refused permission to appeal this judgment. Read Jenny’s blog about it here: Application to appeal against judgment authorising withdrawal of life-sustaining treatment: Re XY

Jenny Kitzinger is co-director of the Coma & Disorders of Consciousness Research Centre, and Emeritus Professor at Cardiff University. She has developed an online training course on law and ethics around PDoC and is on X and BlueSky as @JennyKitzinger