Coma and treatment withdrawal: An unusual case

By Rhiannon Snaith, 2nd August 2023

Note: The judgment has been published here: Re IN (Withdrawal of CANH) [2023] EWCOP 32

This case (COP 14094683, before Mr Justice Poole) was heard in the Royal Courts of Justice on Friday 21 July 2023. The hearing was listed as a ‘hybrid’ hearing which meant that people could attend either in-person in the courtroom in London, or via a video or telephone link. In my case, I attended remotely using Cloud Video Platform (CVP).

I received both the link and, a bit later, the Transparency Order on the morning of the hearing which was scheduled to begin at 11am. The person at the centre of the case (IN) is a 55-year-old man who is currently in a coma after suffering a severe pontine haemorrhagic stroke whilst driving his car, resulting in a car crash. Consequently, IN suffered both a cardiac arrest and hypoxic brain injury. He has been in a coma for over 6 months and is currently being treated in a neuro-rehab ward in Hospital. 

It was indisputable in this case that IN lacks capacity to make his own medical decisions.  The question before the judge was to determine whether treatment, primarily CANH (clinically assisted nutrition and hydration), should be withdrawn or continued. 

As is common in hearings such as this, a focal point throughout was what IN would want for himself in this situation. As stated by Mr Justice Poole during the hearing, IN “has not made an advance decision and has not appointed an attorney” – so there was no record of what treatments he wanted to refuse under what conditions, and he had not appointed anyone to make decisions on his behalf if he became unable to do so. 

Furthermore, it became clear that IN and his family had not previously discussed his wishes which meant that determining what IN would want for himself in this situation was incredibly difficult. The family believe that he would want to continue treatments, with his daughter saying that she would want him to “pass away naturally”. But the judge said towards the end of the hearing, “in terms of beliefs and values there is no clear evidence that the court can use as a marker to determine one way or the other what he would want in this circumstance”.

The hearing 

The applicant in this hearing was the Trust, represented by Rhys Hadden. The application was made to the court to ascertain whether it is lawful and in the best interests of IN to discontinue CANH. Two members of IN’s family – his brother and his daughter – were parties to this case as litigants in person, (i.e., they did not have legal representation). 

I noticed that, Emma Sutton KC, who was present as counsel for IN via the Official Solicitor asked questions throughout the hearing in order to assist the family’s understanding. 

Also present at the hearing was IN’s treating doctor, Dr N, and independent expert Dr Andrew Hanrahan. 

As the hearing began, the judge first spoke to IN’s family. He asked how they would prefer he refer to IN, to which the family responded that they did not mind. He also explained that they were able to give evidence if they wished and checked whether an interpreter was needed for IN’s daughter who joined remotely. She indicated that she did not need one but said “I don’t know because I have emotions, maybe I will”. The judge also explained that there were observers present who would be able to report, or comment, on this case but were not permitted to publish anything that would identify, or be likely to identify, either IN or any of the family members. 

Counsel for the Trust 

Rhys Hadden, counsel for the Trust, provided a useful summary of the case for those attending the hearing. He explained that IN, who also has Type 2 diabetes and is receiving insulin, is currently in a coma and is being treated in a neuro rehab unit in a hospital, to which he was admitted in December 2022. It was explained that following his accident, IN’s brain has atrophied globally, and he has been consistently assessed as being in a low awareness state below the vegetative state (VS). Mr Hadden explained that the Trust’s view is that IN’s coma is “irreversible” with no prospect of recovery and any further treatments would be “futile”. It’s said that the burdens of treatment far outweigh their benefits. As a result, it is the Trust’s belief that it would be in IN’s best interests for CANH to be withdrawn with IN being subsequently “placed on a palliative care pathway”.

The application made by the Trust was, primarily, to address the following issues: 

1. Whether IN lacked the capacity to make his own decisions regarding his medical care and treatment. 
2. What would be in IN’s best interests with regard to medical treatments. 

In order to have capacity to make a decision, a person needs to be able to understand, retain, and weigh information relevant to the decision they need to make (s. 3.1 Mental Capacity Act 2005) and then communicate their decision. It was uncontroversial that IN did not have the mental capacity to make a decision in this case. 

Judicial visit 

The judge told the court that he had, accompanied by a representative of the Official Solicitor, recently visited the patient in hospital stating: “I introduced myself to him… an occupational therapist stood by his bed with me and answered some questions about his care”. The judge noted that IN’s bed area “had no personal touches except for poster that I would describe as iconography” that was placed above his bed. It was later established through a discussion with IN’s brother that the poster had been brought by a priest who had visited IN, who belongs to the Romanian Orthodox church.

Witness evidence 

Next, IN’s treating doctor, Dr A, a consultant in rehabilitation medicine, was called to provide evidence. During this section of the hearing there were some audio issues with Dr A’s audio being distorted and indiscernible. It was suggested he disconnect and reconnect again, and to also find a headset if available to help mitigate these issues. After a few minutes, Dr A had logged back in and was using a headset, after which the issue with the audio was not solved but seemed slightly better (at least to me). 

Dr A stated that he had been treating IN since March 2023, though he had previously visited him in the intensive care unit. Dr A stated that though “there isn’t a category of persistent coma state or chronic coma” if there were, that is the category that IN would be in. He said that IN has no awareness and no sleep/wake cycle, further stating that IN is in a persistent vegetative state (PVS). Dr A explained that though he has treated many patients in PVS, he has “never have I seen a patient with no sleep/wake cycle seven months down the line”. Ordinarily, it is rare for a coma to last beyond two to four weeks. 

When asked about the prospect for someone in IN’s condition to progress from a coma state to a vegetative state, Dr A stated that due to the duration of time that IN has been in a coma, paired with the fact that there has been “no positive trajectory”, this prospect is non-existent. In terms of his quality of life, Dr N stated that IN “has very poor quality of life”: he is fully dependent on nursing staff for all his care and day-to-day needs.

If it was ruled that life sustaining treatment should be withdrawn, Dr A explained that they would “remove nutrition and hydration, and insulin but keep tracheostomy and administer medications via a PICC line to keep him comfortable”, though he stated that he cannot be “100% sure” that IN would not experience any pain. Dr A said that he had a discussion with Dr Hanrahan about his experience in similar cases, and that Dr Hanrahan’s opinion was that if they were to take away the tracheostomy IN would struggle to breathe which would be distressing for both the family and the care staff. “So, I think on reflection I have suggested that we do not remove the tracheostomy”.  If CANH were not to be withdrawn, Dr A stated that they would “put in a feeding tube [directly into his stomach] and would seek to place [IN] in a nursing home” that would be able to care for his needs. Currently, IN has a nasal-gastric tube for feeding.  

Regarding the issue of pain, Dr A described the two measurements that have been “intermittently used to assess his [IN’s] pain”. He said that both scales have been used on more than one occasion and that IN has rated significantly low on both scales. Dr A further stated that the only response they have seen that may indicate that IN is in pain is a grimace. When questioned further on this, Dr A said, “When you move his legs or sometimes when we take blood samples and when he is moved, there is a small twitching of his face which we surmise to be a grimace… And other times we take a blood sample, and he wouldn’t bat an eyelid. There’s no consistency about this.” 

The judge asked Mr A “In terms of the step-by-step withdrawal, what if there was an apparent change in his level of consciousness during the stages that are set out in this plan, what would happen then?” To which Dr A responded that if there was a “surprising” improvement that they would withdraw from the plan and seek further advice. The judge then went on to ask, “If palliative care is given what would that involve?” Dr A explained the plan would include pain and secretion management, medication to help with breathing struggles, and the use of midazolam to control any seizures IN may have – all to help make him as comfortable as possible. 

When IN’s daughter was asked if she would like to ask Dr A any questions, she raised the concern that her father would feel thirsty or hungry if CANH were withdrawn. This is often a concern for family members and loved ones of the patient. Dr A explained that while he can’t be sure IN wouldn’t feel pain or discomfort, they would use drugs that suppress the central nervous system, and the expectation is that IN would be in “such a deep sleep” that he would not be able to feel anything. 

Following this, IN’s brother was also invited to ask any questions. It was at this point that IN’s brother questioned why Dr A wanted to “disconnect” his brother from treatment from the moment that IN was moved to the neuro rehab ward. The judge then clarified and asked Dr A “did you at a very early stage take the view that nutrition and hydration should be withdrawn?”. Dr A replied that no, he did not. He stated that he wanted to seek evidence of IN’s level of awareness which they did and that once they were certain that there was no positive trajectory, they contacted the court. 

Dr A stated that he wished to clarify that “My personal beliefs are extremely pro-life, and we have a lot of patients in PDOC [Prolonged Disorders of Consciousness] at [Hospital]. I frequently see such patients and I have never once approached the court for withdrawal of CANH because that is not something I take lightly. This is something I find quite distressing and difficult to handle.” He continued: “If I found the patient to be in a vegetative state, I would have no problems putting in a feeding tube and transferring him into the community, to a care home. That is the easy option. Taking the case to court is the harder option, but I strongly believe that is the right answer in this case.”

Expert Witness: Dr Andrew Hanrahan, Consultant in Neuro-Rehabilitation

Dr Hanrahan reiterated Dr A’s observation that this is “an unusual case” as it is rare to have someone in a coma (as opposed to VS) for over 6 months. He agreed with Dr A that IN’s life expectancy, if all treatment were to be continued, would only be a few more months. This is because IN has many risk factors including diabetes, stroke, infections, and prolonged immobility which may impact his life expectancy even if treatments were continued. 

When asked about the detriment of keeping IN alive for the 3–6-month period should treatment be continued, Dr Hanrahan argued that “discontinuing is not the point. The point is about whether you can continue it without consent”. 

This presents the very important point that if someone cannot give consent to the treatments being provided, then they can only be provided under specific circumstances.  This is how Baroness Hale put it in Aintree (Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67; [2014] AC 591)

“19. … Generally, it is the patient’s consent which makes invasive medical treatment lawful. It is not lawful to treat a patient who has capacity and refuses that treatment. Nor is it lawful to treat a patient who lacks capacity if he has made a valid and applicable advance decision to refuse it: see the 2005 Act, sections 24 to 26. Nor is it lawful to treat such a patient if he has granted a lasting power of attorney (under section 10) or the court has appointed a deputy (under section 16) with the power to give or withhold consent to that treatment and that consent is withheld; but an attorney only has power to give or withhold consent to the carrying out or continuation of life- sustaining treatment if the instrument expressly so provides (section 11(8)) and a deputy cannot refuse consent to such treatment: section 20(5). 

20. Those cases aside, it was recognised by the House of Lords in In re F (Mental Patient: Sterilisation) [1990] 2 AC 1 that where a patient is unable to consent to treatment it is lawful to give her treatment which is necessary in her best interests. Section 5 of the Mental Capacity Act 2005 now provides a general defence for acts done in connection with the care or treatment of a person, provided that the actor has first taken reasonable steps to establish whether the person concerned lacks capacity in relation to the matter in question and reasonably believes both that the person lacks capacity and that it will be in his best interests for the act to be done. However, section 5 does not expressly refer both to acts and to omissions, the giving or withholding of treatment. The reason for this, in my view, is that the fundamental question is whether it is lawful to give the treatment, not whether it is lawful to withhold it.”

The family said they wanted “a ‘natural death’ for IN.  This is a view often expressed in cases such as this. However, it can also be argued that discontinuing treatments could allow a natural death, as it removes artificial interventions that delay the dying process. Dr Hanrahan argued that it is “equally natural not to eat and drink after a severe brain injury. It is also a way of allowing natural death”. Furthermore, Dr Hanrahan stated “it is clear to me that IN is, in clinical terms, dying” with it just being a question of trajectory, time and interventions that interrupt the natural process of death.

When referring to the grimace that was mentioned by Dr A, Dr Hanrahan said it is “a neurological phenomenon not an emotion”, as he argued that when there is little neuro-connectivity, the face is where you are most likely to see motor movement. He said that when the nervous system is badly damaged, the most common response to any stimuli (even pleasant ones) is a grimace. Dr Hanrahan’s statements further support Dr A’s assertion that the grimace does not necessarily mean that IN is experiencing any pain or distress. 

In terms of the palliative care plan, Dr Hanrahan suggested that it would be more benevolent to keep the tracheostomy in place, but to deflate the cuff as it “reduces risk” by creating an “alternative airway”. He stated that with regular mouth care, secretions can be managed which would reduce the worry of secretions appearing and moving elsewhere. Additionally, it was Dr Hanrahan’s belief that nothing could be added to the palliative care plan and that the plan would prevent IN from suffering. He stressed that “the event of dying, it should be as comfortable, and peaceful as possible”. 

Family beliefs

When IN’s brother came forward to provide evidence (via an interpreter), he spoke fondly of his older brother describing him as “an openhearted man with a lot of strength”. When describing IN, his brother spoke of the importance of religion to IN, “he was a believer in god” who attended church every Sunday even after he had moved to the UK. 

When giving evidence, he asked that if his brother has months left to live then “why can’t they let him pass away on his own?” The judge responded by stating that evidence was that IN had between 3-6 months to live if CANH was continued and asked IN’s brother whether, in his view, it would be in IN’s best interests to continue CANH. He responded, “I am not God to make a decision”. Though he later said, “I think he [IN] would like to see if he would be able to get better because he is a man who has been through lots”.

When asked about his brother’s health before his stroke, the brother explained that a year before, IN had to undergo heart bypass surgery, and after 2-3 months of recovery he returned to work. He points to this instance as testament to his brother’s strength. 

In his final comments to the judge, IN’s brother says, “The only thing I can say now is why should we take his life so early before his time is due and why should we not allow him to pass away the way it is supposed to be, the way God would say [want].” 

IN’s daughter took a similar stance stating that she would prefer her father to continue with the current treatment. As per her religious faith, she expressed her hope for a miracle and wished that her father be able to pass away naturally.

In the closing statements, IN’s daughter communicated her worry that her father would be in pain and expressed similar wishes to her uncle. She said, “it will take weeks for him to pass away, and he will be in pain all the way though. I can’t agree to put my father through something like this. It is up to God to decide my father’s life”.

When asked by the judge whether she would like to travel to the UK should the court rule that it is lawful and in the best interests of IN for treatment to be withdrawn, she answered that yes, she would wish to but was unsure as to how long she would be able to stay. The judge told her that the “Trust would delay starting withdrawal of nutrition and hydration for up to 10 days would you wish to come to England within that period”. 

In the closing statements, it was expressed that IN’s family had not had the opportunity to discuss with IN what he would want for himself in this situation. Though they believe that due to his religious faith and the fact that he was a “fighter”, that IN would not want treatment to be discontinued. 

Judgment

In his judgment, the judge concluded that it was not in IN’s best interest to continue CANH. “He has no prospect of recovery and provision of treatment by way of CANH would continue his burden and delays his death. The burdens of living far outweigh its benefits”. The judgment has subsequently been published in full (here).

Before the hearing ended, the judge said, “may I offer my sympathies to [IN’s daughter] and [IN’s brother] and his wife…I hope that they can all find some peace even in these awful circumstances”.

Reflections

There are a number of things that stood out to me in this case. Perhaps most notably, was the diagnosis of IN, and the unusualness of his condition in that he had remained in a medically stable coma even after several months. I couldn’t help but feel sympathy and sadness towards both the family and the treating staff. As Dr A stated, he found this to be a particularly difficult and distressing decision to make, and of that I have no doubt – though there is no denying that end-of-life decisions are rarely easy decisions to make. 

In other ways, this case was not unlike other cases that I have observed particularly in terms of the wishes, beliefs, and faith of the patient’s family members. Often, families hold out a hope that their loved one will recover even when medical evidence suggests that the prospect of recovery is extremely low. It is not uncommon for families to want to wait for a ‘natural death’ rather than feel implicated in decisions to withdraw treatment. And sometimes the religious beliefs of family members are clearly relevant. In this case, IN’s family held strong religious convictions and believed that death could only be decided by God. Religious belief is a topic that is often present in court hearings, and in discussions regarding end-of-life. While these beliefs can often provide an insight into the values of P, it can also be argued that while it is important to take into consideration, it is not always a defining factor when determining what P would want for themselves.

Although they were not involved in this case, Christian Concern has often provided legal intervention and advocacy in end-of-life cases in the Court of Protection and in the Family Court. In their written evidence submitted to UK Parliament (found here), they state that “Christian Concern has been at the cultural forefront of supporting the right to life from conception until natural death” and “have supported numerous individuals and families where end-of-life issues have encroached on the threshold of what rightly should be labelled euthanasia”. Through their involvement, their ‘pro-life’ narrative is asserted, and while they seek to aid families and individuals, there is also a motivation to influence public policy and legislation and publicise their beliefs.  As we have seen before (see Celia Kitzinger’s blog post and Jenny Kitzinger’s blog post here), there have been instances where cases have been used as a way to promote a broader agenda. 

The topic of a ‘natural death’ is most associated with DNACPR (do not attempt cardio-pulmonary resuscitation) discussions, especially in academic literature. Allowing a ‘natural death’ often refers to allowing someone to die without the use of artificial life-sustaining treatments. However, in some cases in the Court of Protection the argument to allow a ‘natural death’ is used in support of allowing life-sustaining treatments to continue, as we have seen in this case. As a result, there is some debate as to what allowing a ‘natural death’ looks like. Media narratives of death are often focused on the polarising and contentious issues of end-of-life decision-making, for instance, dying naturally versus respecting individual autonomy. This case highlights these debates and shows how a ‘natural death’ may be somewhat of a subjective concept. 

For me, this case highlighted the importance of both advance care planning, which is a process through which you can document your personal values, goals, and preferences regarding future medical care, appoint someone to make decisions for you if you can’t, and – if you want to – you can make legally binding treatment refusals.  Though conversations about death and dying are never easy, it’s important to make sure that you and your loved ones have a plan in place or are aware of what kind of care you would want at end of life. This narrative is rarely seen in media coverage of these cases. In part, this may be explained by the fact that advance care planning is often a personal matter and doesn’t always include dramatic conflicts or disputes that capture media attention. However, as we have seen in this case, its prevalence in discussions involving end of life decisions is undeniable. 

There hasn’t been any media coverage of this case – at least so far.  It’s unfortunate, in my view, that journalists are not bringing cases like these to public attention.  In part, this is because of the reporting restrictions.  Not being able to name the people involved in the case – or even the public body (the Trust) or hospital – has a chilling effect on Transparency. So, I was pleased to notice that the judge addressed the matter of the Transparency Order following the Abbasi case in March this year. As a journalism student, I am concerned that reporting from the courts should be as open and transparent as possible and Abbasi (Abbasi & Ors [2023] EWCA Civ 331) has contributed to that.  he Court of Appeal grappled with the problem of reporting restrictions in serious medical treatment cases and concluded, as noted by Alex Ruck Keene in his Mental Capacity Law and Policy blog, that in future cases “indefinite RROs (at least in respect of securing the anonymity of professionals, rather than the person or their family) will very much be the exception rather than the norm”. 

In relation to this hearing, the judge ruled that the part of the Transparency Order preventing publication of the name of the Hospital and the treating clinicians shall be discharged seven days after IN’s death. Before Abbasi it was usual to see Transparency Orders simply stating that the prohibitions on identifying public bodies, hospitals and clinicians would remain “until further order of the court”.  So, this is an important development for freedom of the press – and in future, the possibility of naming at least the public bodies and the Hospital might result in cases like these being reported and adding to public understanding (see §44-§47 of the approved published judgment).

As always, attending this case was both an upsetting and an eye-opening experience. Observing cases such as this one is helpful both in developing my understanding of the court process and the decision-making process but also in developing an understanding of the impact these decisions and processes can have on those involved, and on the ways in which journalism engages with serious medical decision-making in the court.

Editorial Postscript: In the published judgment, there is a postscript: “I gave this judgment in open court on 21 July 2023. Very sadly IN died in hospital on 24 July 2023. This was before the implementation of the plan to withdraw CANH. I have offered my condolences to his family who raised no objection to this judgment to be published.”

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