“He deserves a chance”? Continuities and shifts in decision-making about life-sustaining treatment

By Jenny Kitzinger, 14th December 2022

Mr P, an active and relatively healthy middle-aged man, had a heart attack at home on 3 September 2021. 

His family, and then subsequently, paramedics, delivered Cardio Pulmonary Resuscitation [CPR]. This was successful, insofar as he remained alive and his heart was re-started. However, he suffered devastating, irreversible hypoxic brain injuries. He has been left in a prolonged disorder of consciousness [PDoC]. This outcome is sadly not uncommon after CPR, a fact which complicates a general public narrative about CPR successes and ‘saving life’.

The medical evidence (from his clinical team and from two independent experts) is that P is currently completely unaware of himself or his environment and has been for the last 15 months. He is in a ‘vegetative state’ (one of the sub-categories of PDoC). There is a very small chance he might, in future, move into Minimally Conscious State minus, another category under the umbrella term PDoC. This slight shift in his level of (un)consciousness is very unlikely to occur. Even if it does it would, for him, simply involve, as one independent expert described, having the ability to feel pain, for example, but no ability to even distinguish between individuals around him. 

His future is likely to involve further physical deterioration (e.g. infections and increased spasticity). His life-expectancy, if current interventions continue, could be seven years. Meanwhile he is at risk of another heart attack or might die because of his increased risk of respiratory infections.

Mr P had not made an advance decision to refuse treatment or appointed anyone with Lasting Power of Attorney for health and welfare. It is, therefore, in the first instance his clinical team and (now) the judge who must make decisions about which of the medical treatments available to him are in his best interests. 

His clinical team is no longer willing to offer CPR or antibiotics for life-threatening infections.

They are apparently still willing to offer clinically assisted nutrition and hydration (CANH). However, they (and independent experts) do not think such treatment is now in his best interests. Efforts to reach an agreement about this with his family (including via formal mediation) has not succeeded. 

The questions before the court in this case were whether it is in P’s best interests for life sustaining treatment (specifically CANH) to be withdrawn, or not (or as more properly described, whether such treatment should continue to be provided). 

Alongside this, the court was also being asked to decide whether the Trust’s proposed palliative care plan is in his best interests.

I was interested in observing this hearing because I have been researching family experiences of having a relative in a Prolonged Disorder of Consciousness for over a decade now and am co-director, with Celia Kitzinger, of the Coma and Disorders of Consciousness Research Centre. We’ve published widely in this area and contributed to guidelines about the care of PDoC patients from the Royal College of Physicians. We’ve also developed resources for families and online courses to support clinical teams with law, ethics and best interests decision-making.

I have been observing court cases for a long time now – and also providing support to families going through them – so I am also interested in how the law, and the conduct of hearings, has shifted over recent years.

In this blog I describe the efforts by everyone involved to try to work out P’s best interests and specifically what P might want in his current situation. This work was done by family and friends on the one hand, and the clinical team/Trust and the Official Solicitor, on the other. Attempts to determine what he might want built on the same evidence (medical information combined with testimony about P’s values and how he lived his life) but different parties had come to different conclusions.

I conclude by reflecting on how this hearing is situated within the context of changing professional guidance/practice and case law over the last few years (including the ground-breaking Supreme Court judgment in Re Y (An NHS Trust & Ors v Y [2-18] UKSC 46).

Who was who in court

The hearing I observed was on Wednesday 7th December 2022 in the Royal Courts of Justice before Mrs Justice Arbuthnot.

The application was brought by the Trust responsible for P’s care, represented by Ian Brownhill of 39 Essex Chambers. The first respondent was P, represented by his Litigation Friend, the Official Solicitor – the barrister was Nageena Khalique KC of Serjeants’ Inn Chambers. The second respondent was P’s eldest daughter (supported by the rest of P’s family) – she was represented by Ben McCormack of Garden North Chambers.

Written evidence had been provided by P’s family and friends and by P’s clinical team. There were also reports by two independent experts (both Consultants in Neurological Rehabilitation). Professor Derick Wade provided a report in January 2022 and Dr Andrew Hanrahan, a jointly instructed expert, provided another independent report in July 2022.

The medical evidence presented in court

The medical evidence was not contested. Neither of the two independent experts gave oral evidence to the court and there was no cross-questioning or direct challenge to the medical consensus about P’s current state or likely prognosis. The level of certainty about his diagnosis and prognosis seemed compelling, informed by knowledge of the nature of the original incident, evidence from brain scans, the fact that it was now 15 months since the hypoxic injury, and evidence from repeat testing over time.

Hearing from family and friends in court

I think this hearing was originally planned to be entirely ‘in person’; however, in the event, it was actually hybrid (due to difficulties experienced by family members in getting to the Royal Courts of Justice on the day). 

Use of technology ensured effective participation from all parties and from people “engaged in caring for [P] or interested in his welfare” (s.4(7)(3) MCA 2005) e.g. a friend who provided oral testimony by video-link. Mr P’s wife and three daughters (also all on video-link) appeared together from their home, with his eldest daughter taking the lead to represent the family and provide an oral statement about her fatherAlthough patients’ relatives can feel that they should be (or want to be) in the physical courtroom, facilitating the option of online connection can be very valuable. Online access allows  family members to support each other while giving evidence from a familiar environment, and avoids additional time and financial stresses at a point when they are often very overstretched and want to be at the bedside.

Everyone in court was consistently committed to ensuring that information about P as an individual was central to the hearing. When the friend due to give evidence had technological challenges joining the hearing, the court allowed plenty of time (half an hour) for this to be resolved and made a point of appreciating the efforts he had put in to participating once he did establish a connection. When the daughter became upset and faltered giving her testimony, the judge gently suggested that the order of witnesses be changed to allow time for her to compose herself. The judge said she wanted to be sure that P’s daughter would be left with no regrets, and would know that she’d been able to communicate what she wanted to in court. 

A point was also made about sharing photographs of P “in happier times”, before his injury. Although not formally filed, all parties were content for these to be shared and counsel for the family gave these to the clerk to pass on to the judge to look at. 

There also seemed to be a very positive relationship between Ben McCormack and the eldest daughter who he was representing. I hope this, and the general approach from the court, meant that the family felt heard, respected and supported.

Witness statements about P as a person

Oral evidence from the eldest daughter: P’s daughter showed great determination in speaking out about her father and painted a vivid portrait of him. I noticed how (like many of the family members with relatives in PDoC I’ve interviewed), she switched between past and present tense when talking about her father, perhaps revealing a tension between acknowledging the extent of what had been lost alongside recognition of his ongoing physical existence and some hope for his return in some form in the future.

“He was an all-round great dad. We have so many great memories”, she said, “He did anything for anyone – he would give the clothes off his back. He is just a great guy”. It is, she said, “really hard to see him [as he is now].” At which point she faltered and could not go on.

Returning to give evidence later, she started by saying that, whatever his current condition, “His presence now is just as powerful as what it was before”. It was clear that even if entirely unconscious, this man is still very much ‘there’ for the family who visit him daily as the much-loved father and husband he has always been.

During her testimony P’s daughter gave more detail about what kind of person he had been. He was, she said, “a loving soul”, a husband who had (until his cardiac arrest) not spent more than one night away from his wife throughout their long marriage. He was also a father devoted to his children, being sure to make time to collect them from school, and – now some of them are older – collecting them from work too, as the whole family continued to live together. He came across as a father committed to raising strong, resilient and independent offspring. He taught his daughters how to plaster walls, change engine oil, and spray paint cars. “Coming from a mixed-race household”, his daughter added, “ he always made sure we were comfortable in our own skins, and true to ourselves”.

A strong theme in the evidence about P was that he would always want to be with his family. His daughter described an incident at work when he fell off scaffolding and broke his leg. In spite of being in great pain, he insisted on being driven to the hospital closer to his family, rather than the hospital closest to his workplace. “Even though he was going through the worst pain imaginable, he still wanted to be closer to us so we could see him.” Her father, she said, would “always fight to come back to his family”.

Although they did not directly dispute the medical evidence, there was a sense that this family found it hard to reconcile what they were being told about P’s condition and what they experienced when they visited him (a very common challenge for PDoC families). During the process of his assessment, we heard the family had shown assessors a video of him. One clip showed him rapidly blinking, for example, which to them seemed to be in response to instruction, but which the experts assessed as a common spontaneous behaviour. Even on the day of the court hearing, the family wanted the judge to see a video too, of what he had been like the day before. Although the video was not formally submitted as evidence all parties were happy for this to be shared with the judge. (For discussion about the use of family videos in other court cases see, “Seeing is Believing? Patient Videos in Life-Sustaining Treatment Disputes”).

The family also seemed to hope against hope that P might defy the odds. “He was a fighter – there wasn’t anything he couldn’t do’, said his daughter. “All we want is to be given more time, he deserves a chance”…and later “All we want is more time. If there is any chance at all, he’d want to take it, to get back to his family”.

Evidence from a friend: The image of this much-loved man was reinforced by evidence from a close friend. Describing P as “like a brother, more than my own brothers”, the friend told the court how Mr P would “never turn anyone away….the generosity of the man just overwhelms you”. He also had huge physical strength and energy. His friend described moving a piano with P; four people on one side, and P on his own on the other, lifting that side all by himself. Prompted by the family’s barrister to talk more about “inner strength”, this friend also underlined that P had great mental strength and a “willingness to do whatever his family needed from him”. Expressing his own difficulty accepting the medical view he added:

“He’s got his eyes open – not focusing on me, but he lifted his head off the pillow which shocked me. I still think he’s in there, fighting. They tell me it’s just muscle spasms, but I find it hard to believe that when he lifts his head. Knowing the man I do, I believe he’s fighting to come out of that coma.” 

He added “I’d like to see him up and about again, to be with his family. I’d like the court to give him that opportunity”.

None of the barristers had any questions for P’s daughter or his friend. They were simply thanked for giving evidence.

Closing submissions and queries from the judge

In his closing submission Ian Brownhill, for the Trust, emphasised that no amount of medical intervention is going to return Mr P to his family. His future is bleak. He’s at risk of physical deterioration, totally dependent on nursing staff to meet personal needs, and at risk of respiratory infection, which, left untreated, are likely to bring his life to an end. He asked the judge to consider whether Mr P would want to live in his current state or, alternatively, be allowed to die with dignity in a hospice surrounded by the family and friends by whom he is so clearly loved.

The judge had some questions for counsel for the Trust. She asked for confirmation that the only reason P had continued to receive antibiotics last time they seemed to be potentially useful was because the family had at that point agreed to mediation (a few weeks earlier, in November 2022) – “so clinicians decided to treat rather than need an urgent hearing or face an unplanned death for Mr P?’ Ian Brownhill confirmed this was correct. She also asked about the current situation about antibiotics and was told by Ian Brownhill that “He won’t be given antibiotics again”. No court order was needed in relation to antibiotics as the clinicians were not willing to offer antibiotic treatment. A similar situation applied to CPR. 

The judge then asked whether the experts were saying there was “no prospect of recovery at all, is that right?” She was told by Ian Brownhill that, if anything, his condition was worsening. There followed some discussion about ensuring that the palliative care plan (should a decision be made to discontinue CANH) was fine-tuned to address P’s and his family’s needs, especially in relation to religion and culture. The plan had been carefully drawn up and, Ian Brownhill said, met the gold standard of clinical care (as outlined in the Royal College of Physician’s guidance on care in these circumstances). However, the family had felt unable to engage with end-of-life planning so far. The judge wanted to be sure this would now happen and expressed concern about, for example, ensuring that P’s large family could be with him at the end (rather than the practical and covid-informed limit of four visitors in the room at any one time, which was the hospice’s general policy).

The court then moved on to hear the closing submission from Ben McCormack. He underlined the fact that family and friends opposed the Trust’s application to withdraw CANH. They had, he emphasised, conveyed a vivid picture of P and the code and principles by which he lived his life: it was a matter of priority to them that this be considered by the court. He also highlighted that the family accepted the medical facts, but they did want to challenge the suggestion that his muscle tone was worsening; this was not their impression from their experience of helping with physiotherapy for him, and it was important to the family that this point be made. 

Ben McCormack also drew attention to P’s religion: “He was a Muslim who believed only God could choose a time of dying. He wasn’t a regular attender at mosque but would have held himself up to be a practicing Muslim”. He highlighted an extract from a written statement submitted by P’s brother: “He would say to me ‘when your time is up, your time is up, until then you don’t give up, no matter what’”. He also highlighted other statements from family about religion: “taking away nutrition would go against his beliefs” (daughter) and “a vital tenet of his faith is the preservation of life” (wife). 

Ben McCormack asked the judge to give due consideration to P’s possible attitude towards ‘chance’. He acknowledged that doctors are unlikely to go into print definitely stating that there is ‘no chance’ of any change, he agreed that the medical evidence was that even minimal change was “spectacularly unlikely”, but invited the court to consider the fact that the family feel that “even if these prospects are really small, this is a man who can and would want, to fight on”. Mr P was an individual who “doesn’t take no for an answer, whether it’s carrying a piano or manoeuvring a steel joist into a building. His family invite you to ensure those core beliefs are accounted for”. 

During this discussion P’s daughter intervened to raise another concern. She described what the family had experienced when P’s catheter had become blocked and “he’s maybe trying to push the water out. To us that means he can feel pain. So, withdrawing nutrition is a really cruel thing to do to someone”. Clearly the family needed to know how any possible pain would be managed if CANH were withdrawn. The issue of how many members of the family might be able to be present at one time was also raised again by the judge and Ian Brownhill asked his instructing solicitor to step out of court to contact the hospice to raise this question with them.

The final closing submission was from Nageena Khalique KC (acting for P, via the Official Solicitor). She outlined Article 2, the right to life and the strong presumption in favour of preserving life – but this is “not absolute and can be rebutted”. She described how reasonable steps had been taken to prolong P’s life over the 15 months since his heart attack and how the MCA Code of Practice indicates that in a limited number of cases treatment could be futile, overly burdensome with no prospect of recovery. She underlined the need for “anxious scrutiny” of what a treatment can do. In this case, she said, there is “a volume of evidence that treatment is not going to change the condition of Mr P…The most that can be expected from treatment is to fend off the infections, pressure sores and worsening contractures”. Quoting from an expert report she highlighted the clear expert view of “what can be expected for Mr P for the remainder of this life”.

“In practical terms ‘there is no doubt’- I pause there – ‘there is no doubt’ about what will happen for the remainder of his life.” 

The words written by the independent expert, she emphasised were ‘clear and unambiguous’ and ‘very stark’. Mr P will not have any autonomy or ability to control any area of his life. He will, by extension, not be the provider he’s always been. He will not have any functional abilities – even to the level of scratching an itch himself. He won’t be able to interact socially “at any level, even at the level of being able to recognise a particular individual”. This was, Ms Khalique KC surmised, something that, “had he had the opportunity to consider” he would be “extraordinarily distressed about”.

Quoting from a joint statement provided to the court by two of P’s daughters, she drew attention to their view that “We wouldn’t want our dad to live in this condition for the rest of his life, and dad would not want that either. But if there is any chance of recovery, he would want that”. She argued that “The whole basis of which the family would want him to continue is based on the possibility of a miraculous event going against all the medical evidence, that he might improve or recover”. There was, she said, “incontrovertible evidence about fixed and extensive” damage to his brain. Addressing the question of what Mr P might wish for in these circumstances she argued that “while the court may accept he’d want a chance at recovery, the court must forensically examine whether there is, in reality, a chance at all”.

Turning to the question of his religious faith Ms Khalique KC quoted from earlier case law and argued that “Religion may well be integral to character but that should not lead to assumptions that P would have taken a particular theological position based on his religion” and that it is “impossible to know what Mr P’s attitude would have been to life being sustained artificially”.

Finally, she highlighted that there was no evidence that Mr P was deriving any pleasure from existence, but that there were some concerns about the possibility of pain. She concluded that for his dignity and autonomy in his final days, it was right for life-sustaining treatments not to be continued. A palliative care plan which allowed him to die with his family around him was now in his best interests.

The hearing concluded with further discussion of the palliative care plan, some discussion about the Transparency Order, and the statement that the judgment would be handed down on Friday. The judge again thanked the family for giving evidence.

The judgment – Friday 9th December 2022

The judgment was handed down the following Friday morning in open court. (It is not yet publicly available in written form but should be posted soon on The National Archives and I’ll add the link when it appears.)

The oral judgment was given online, and everyone (including the family) joined by video-link. 

Mrs Justice Arbuthnot outlined the legal reasoning behind her decision and declared that it is lawful and in Mr P’s best interests for the treating team (a) not to provide ventilation or life sustaining treatment in the form of CANH, and not to provide CPR, and (b) to provide palliative care. 

In handing down this judgment the judge was careful to acknowledge both the kind of man P had been and the family’s concern. She highlighted P’s daughters’ view that withdrawing life-sustaining treatment might “stop what God has written for our dad”. But she said, “The life sustaining treatment delivered thus far has already interfered with what God has written for their father” – and was at pains to point out: “the time of death has nothing to do with the decision of this court”. After CANH is withdrawn: “nature will take its course”.

Execution of this order was delayed until noon on Tuesday 13th December 2022. This was to allow family to consider whether they wanted to appeal (I understand there won’t be an appeal) and to give them time to meet with the palliative care consultant and input into the palliative care plan if they now feel able to engage with this process. 

Reflections: continuities and shifts over time

Since the landmark Supreme Court case of Re Y in 2018, withdrawal of CANH from patients in a vegetative (or minimally conscious) state no longer requires a court application. 

Before Re Y, there were many court hearings at which clinicians and family agreed that withdrawing CANH was in the person’s best interests, but doctors and palliative care teams were unable to proceed without the approval of the court. The decision in Re Y means that decisions about CANH for PDoC patients now come to court only if there is disagreement about what is in the person’s best interests, or the decision is ‘finely balanced’. 

Clearly this case was in court because of disagreement between clinicians and family, and the bases for that disagreement are very familiar to me. 

Like many other families (including those who eventually – years later – ask for treatment to be withdrawn), the family in this case was holding on to the smallest glimmer of hope to stave off the devastating certainty of loss if their loved one died. Like so many people, they also had a belief that their family member was the one who would defy the odds – he is a ‘fighter’ whose sheer determination will enable him to overcome catastrophic brain injury. They also conveyed their strong sense that the person they knew is still ‘in there’, in the warm and moving body, that looks so different from how one imagines a classic ‘coma’.

The hearing was typical of most hearings I’ve observed in recent years, in that the court’s central focus was on working out what P himself might want in the circumstances. 

Mr P meets all the criteria for the diagnosis of a ‘Permanent Vegetative State’ [PVS] (as defined by the RCP PDoC guidelines). The diagnosis of PVS is one which for various reasons, is less emphasised nowadays, in favour of recognising a continuum of consciousness between absolutely none and the flickering awareness of the minimally conscious state, and combining this with a detailed discussion of prognosis. This is a change that comes with pros and cons in terms of family reactions and understanding (CDoCTraining, “Introducing Prolonged Disorders of Consciousness: Unit 3). In earlier hearings,  the suggestion was sometimes made that someone in PVS has ‘no interests’ (an argument made by the Official Solicitor in the Bland case (Airdale NHS Trust v Bland [1993] AC 789). This point was notable by its absence from this hearing (and I have not heard the ‘no interests’ argument mentioned recently at all in court hearings). At the very least, it was acknowledged that Mr P – even if entirely unconscious – had an interest in the manner of his death, and as a devoted family man, he would care about his family’s experience of his end-of-life care, their future wellbeing and how they might remember him. 

There was also no suggestion that Mr P’s values or statements of beliefs should be anything other than core to the decision. Even though there was no evidence of explicit statements about what he would have wanted in his exact circumstances (and no advance decision) a great deal of thought was put into trying to see things from his potential perspective based on what was known about how he had approached life, his faith, his commitment to his family and the code he lived by. It was clear that this would be given significant weight in the best interests balance sheet. This, of course, was not always the case. In W v M, heard in 2011, the judge stated:

“Given the importance of the sanctity of life, and the fatal consequences of withdrawing treatment, and the absence of an advance decision that complied with the requirements previously specified by the common law and now under statute, it would be in my judgment be [sic] wrong to attach significant weight to those statements made prior to her collapse.

I would be very surprised to see a similar statement in a judgment today, over a decade later.

The other element of this hearing that stood out for me was how well-prepared the case was (at least at this stage in proceedings). It seemed clear that Mr P’s clinical team had taken ownership of their responsibilities in relation to best interests and that they had also sought out independent opinion in a timely manner: the first independent expert report was commissioned within a few months of Mr P’s anoxic injury. All the appropriate evidence was in place for the hearing. Although the judge said it was unfortunate that there may have been a delay in enacting Mr P’s best interests because of the mediation (in November 2022), I thought that must have been a hard judgment call for the clinicians trying to work out the best way forward. 

From what I could deduce from the hearing, the action of clinicians in this case reflected what I have seen since the Supreme Court decision in Re Y – which is that clinical teams are increasingly building up the confidence to take responsibility for going through a full best interests process and making every effort rigorously to adhere to the (very clear) RCP and BMA guidelines. It was also good in this case to see explicit statement from clinicians that some treatments were simply not on offer (something which has been more ambiguous in other hearings I’ve observed, where clinicians seem to say that they do not think they should offer a treatment, but would if the judge decides it is in P’s best interests to do so).

Finally, what was evident in this hearing, and I have increasingly observed in other best interests decision-making discussions (both inside and outside the courts) was adherence to the principle that CANH should be treated in law as a life-sustaining treatment like any other and subject to the same best interests processes (as is spelt out by the BMA/RCP guidelines). Alongside this, there seemed to an acceptance that death following CANH-withdrawal might even be preferable to death from, for example, an untreated infection. This can seem counter-intuitive, and certainly challenges the popular discourse around ‘dehydrating and starving to death’ but the suggestions that this can be a relatively ‘good death’ is something supported by family reports to us (see Deaths after feeding-tube withdrawal from patients in vegetative and minimally conscious states: A qualitative study of family experience;  see also CDoC Training: ‘End-of-Life care course: Unit 4, ‘Positive experiences’).

Evidence that death following discontinuation of CANH can be relatively peaceful is also supported by clinical experience. Lynne Turner-Stokes and her colleagues published an invaluable review of ‘experience and lessons’ from the last eight years of decision-making about life-sustaining treatment for PDoC patients in their care. They note that: 

“However sensitively managed, BI discussions regarding elective CANH withdrawal can be very difficult for families, and they require support in their own right. Nevertheless, the feedback from families has been very positive with many expressions of gratitude to the team for supporting a dignified and peaceful death…our experience has been that dying in this situation has often been more peaceful than dying a respiratory death.” 

Understanding of Prolonged Disorders of Consciousness, the care of patients, support for their families, and the law around treatment decisions has undergone rapid evolution over the last decade. Clear monitoring and auditing of patient pathways and decision-making about (dis)continuing life-sustaining treatments is needed, both in the courts and in the clinic, but it seems to me there have been positive developments. I think Mr P’s family can be confident that a huge amount of skill, care, time and experience has gone in to trying to make the right decision, or ‘the least worst’ decisions, in the tragic circumstances in which he, and they, now find themselves. 

Jenny Kitzinger is Professor of Communications Research at Cardiff School of Journalism, Media and Culture. She also co-directs (with Professor Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre and runs online training for healthcare professionals about law and ethics. She tweets @JennyKitzinger

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