When another assessment is not needed: Best interests decision-making for a patient with a prolonged disorder of consciousness

By Jenny Kitzinger, 14th October 2021

In September 2019, a young man’s car collided at speed with a stationary lorry – leaving him with severe brain injuries. Two years on he remains in a Prolonged Disorder of Consciousness (an umbrella term that includes states previously known as ‘vegetative’ and ‘minimally conscious’). 

The hearing I observed on 7^th October 2021 (Case: COP 13820439 before Sir Jonathan Cohen) was instigated by an application from the Clinical Commissioning Group responsible for commissioning this patient’s care. The CCG (represented by Emma Sutton) believed that it was not in his best interests to continue with clinically assisted nutrition and hydration. Nor did the CCG believe that a further assessment of his level of consciousness was needed. The CCG’s position was that it was in the best interests of this young man (referred to as “ED”) to now be moved to a hospice for end-of-life care.

The first respondent in this case was ED, whose best interests were represented by the Official Solicitor (OS)  (Fiona Patterson). The preliminary position of the OS was to support the CCG’s position, pending hearing oral evidence.

Both his parents (who separated some years ago) were also parties to the case:

• ED’s mother (a litigant in person) supported the CCG’s application
• ED’s father (a litigant in person) opposed the application, arguing instead that his son should have further structured assessments, specifically another ’SMART’ test^[1]

In addition to the parties, ED’s treating physician and an independent expert in neurological rehabilitation were also in court. 

The hearing was listed to last for one and a half days.

The hearing

A strong sense of ED as an individual was conveyed from the outset of the hearing – not least because of the letters from family members about him which had been submitted to the court. The judge went out of his way to comment on how much he appreciated the thought that had gone into these statements (and in the case of ED’s sisters “the shafts of humour”) that “have helped build a picture of a very impressive young man”.

ED was in his 20s and had, before his injury lived with his mother and stepfather. He was humorous, hard-working, set himself high standards and was very ambitious and successful at work. He was also physically fit and a keen sportsman: we heard that a photograph of him in his rugby kit was included in the court bundle and the judge made a point of noting that he was “not only a big fan but also a proficient player”. 

ED was now fully dependent on others for everyday care, with no ability to communicate and no control over his body and he had various complications (including spasticity and reduced control over basic physiological functions such as temperature and pulse rate.) He’d been extensively assessed by experts and had been looked after in a specialist neurorehabilitation centre since December 2019.

There was, the CCG barrister stated, “no real prospect of recovery to a quality of life that [ED] would have found acceptable”. 

It was clear that extensive work had been done prior to the case getting to court (as per guidelines from the BMA and RCP guidelines that you can find here and here). This preparation work included detailed assessments of his condition, collating clinical evidence, collecting information about ED as an individual and running best interests meetings with family members in order to attempt to resolve the case without  the need for a court hearing. 

It was the fact that the father continued to disagree with the best interests decision that had triggered the court application – and the area of disagreement had been honed down such that it focused on one issue: whether or not another assessment was needed.  

The first witness was Professor Derick Wade. He was one of the two independent experts who had assessed ED and reviewed the conclusions drawn by ED’s clinical team and the evidence they relied on.

The two independent experts (normally only one independent expert is commissioned in these sort of cases) had submitted evidence that ED is in a prolonged disorder of consciousness, with no behavioural evidence of self-awareness ever having been seen since the brain injury. There was a consensus between the two independent experts, and between them and ED’s treating physician, about his prognosis.

Professor Derick Wade was sworn in and asked to explain his qualifications and experience in the area and summarise his basic conclusions. He was then cross-questioned first by the barrister for the CCG and then by the barrister for the OS. A clear focus of the questioning was, as counsel for the OS put it, to test “why we can be confident that, to put it in lay terms, ‘no stone has been left unturned’”.

Professor Wade described his role as an external expert as ensuring that “the totality adds up and there are no unusual features”. He outlined the nature of the original injuries to ED, some of the explorations of treatment and tests done on him, and the nature of the care he’d received over the last two years.

We heard that ED had three ‘insults to the head’ from the high-speed collision: firstly diffuse axonal injury from the deceleration, secondly direct trauma to the brain, and thirdly a reduction in oxygen to his brain because of injuries to his chest. Professor Wade commented that the mechanics of injury “obviously don’t directly determine what his clinical state is afterwards, I don’t make assumptions [that these injuries would have inevitably resulted in his being in a PDoC] but I’d be surprised if he weren’t”.

Professor Wade had also looked at earlier structured assessments that had been conducted (SMART and WHIM) and at reports of CT scans. Again stressing that he would never make a diagnosis on the basis of a CT scan alone, he commented that the “CT scan is totally consistent with the severity of the initial injury and what we see”. He had also examined the patient himself and examined day-to-day nursing notes.

Counsel for the OS then asked whether the way in which the patient presented physically gave a steer to his prognosis and Professor Wade highlighted ED’s “autonomic instability” – poor control over temperature, heart rate, and rate of breathing – which, he said, suggested that the hypothalamus (located in a very sheltered part of the brain) had been injured. Close observations of the patient by his family and all the professionals looking after him were also discussed.

This led to a discussion of elements such as startle responses to loud noises or occasional eye-tracking (described by Professor Wade as “when the individual will fixate on something and if you move whatever it is, their eyes will follow it”). Professor Wade commented that eye tracking could be an important prognostic indication early on after injury, for example, “If after 5 weeks they start tracking you can say that this increases the chance they will wake up”. However he stated that brief periods of eye-tracking two years after injury did not substantially alter the situation: it does not indicate presence or absence of awareness, and it is no longer useful prognostically. (Wade referenced his published work on this point which you can read here).

Further cross-questioning explored whether physical disabilities, or depression might significantly inhibit P’s ability to display a higher level of consciousness, and Professor Wade was asked whether pain relief might be artificially suppressing ED’s level of consciousness. He responded:

“If he needs the medication to keep him comfortable then assessing his situation when he is not on medication to keep him comfortable is slightly pointless as that is not how he is going to be. If the medication is not needed then he shouldn’t be on it”

Pain was obviously a particular concern for ED’s mother. Counsel for the CCG reported that ED’s mother said medication for spasms and pain were reduced for the original SMART (and she was opposed to this being done again). Professor Wade responded by commenting that:

 “Reducing medication that reduces pain or spasms does potentially cause harm to the person. I believe he doesn’t experience anything, I do not know that, and if he looks like he is in pain… the clinical team have to treat that.”

It was clear that the harms of conceding to ED’s father’s request for further testing might include ongoing potentially unwanted treatment, and P’s own clinical team were concerned about the possibility of physical deterioration and increased pain (they had already increased analgesia administration in response to increases in agitation). The question was then: what were the benefits of further testing?

Professor Wade highlighted the value of providing additional systematic information at particular points in time and especially if those looking after the patient were not experienced in PDoC. In this case, however, for this patient, at this point in time, given everything already known, and the fact he’d been cared for in a specialist setting, Professor Wade thought that ““you have got more than enough [information] to make the decision that you have to make”. He did not consider another SMART would add anything useful. He commented: 

“The main question is .would knowing the SMART assessment in detail (it’s already been done once) alter the decision? […] What we need to determine is what is ED’s life like now, and that is described in the day-to-day nursing notes and experience that day-to-day clinicians have. Given how ED is and how is life is going to be, what would he have decided? He was not going to decide that on the basis of a SMART score.”

Counsel for the OS asked Professor Wade what the best possible ‘against the odds’ outcome might be for this young man in future. The response was:

“At his best, he wouldn’t be able to undertake any ‘useful’ activities (e.g. chewing, swallowing, interacting with friends/family)….At his best ED might be awake for much longer periods. Localise more consistently, such that he would normally look at someone entering the room. If a conversation going on around him, he might look at the person speaking and then the next person speaking.”

Professor Wade agreed that more time might also mean more deterioration (a major concern for this treating team). He also acknowledged the treating team’s view that ED was needing increasing amounts of more analgesia. He accepted that:

“he is showing changes that are indicative of pain in most people – I’m not necessarily agreeing he is experiencing pain, but it looks like pain and we have to treat it”.

It was at this point that the barrister for the OS alerted the court that she had received an email from ED’s father – and asked for a short adjournment. The judge asked a few questions of Professor Wade himself, and then adjourned.

Following the adjournment, the court was informed that, having listened to Professor Wade’s evidence, ED’s father wished to withdraw any opposition to the CCG’s application

The judge then asked, “Would it be helpful if I made a judgment?” and after a brief period of consultation (e.g. the counsel for the OS checked with ED’s mother), it was agreed that would be useful. The judge made a formal oral judgment approving the CCG’s application. (I’ll add a link here to the written judgement once it is published).

Reflections

Two things stood out for me as an observer – the first was the value of a holistic approach to assessing diagnosis and best interests, and the second was the speed with which the case was resolved in court.

The importance of a holistic approach

In this hearing, the expert witness, Professor Wade, offered a considered discussion of the importance of a holistic approach to determining best interests – taking into account information about the patient from those who knew them before their injury, and information about their current condition. This holistic approach was also evident in the discussion between expert witness, the different parties’ barristers, and the judge.

The value of systematic testing was acknowledged, while also emphasising the importance of looking at clinical information ‘in the round’ without fixating on any individual features of the patient’s behaviours and taking them out of context of other clinical information (or of information about the patient’s likely wishes).

This demonstrated positive progress compared to some cases I observed a few years ago. In the past I’ve attended hearings where instead of talking about PDoC there was a forensic focus on the borderline between VS and MCS – and this sometimes seemed to displace addressing what the patient might have wanted. For example, there were often requests for further refinements/repetitions of tests to see if there might be intermittent glimmers of consciousness, even when the patient had been in their current state for many years and when there was evidence that the patient themselves would not have considered MCS to be a ‘better’ diagnosis than VS or mean there was the possibility of a future life they would have wanted. (See, for example, Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32 and the issues about diagnosis discussed here).

The speed with which the case was resolved in court 

This hearing also demonstrated how useful the court can be in resolving a dispute.

It was clear that considerable discussion had taken place with ED’s father before the hearing, and he had met with his son’s clinical team, had talked with Professor Wade and seen his expert report. So it was a surprise that within an hour of the hearing starting (a hearing scheduled to last a day and a half), ED’s father changed his mind and withdrew his opposition to the CCG’s position. 

I think many of us in court were left wondering why this might have happened. Without hearing from ED’s father himself we can only hypothesis about what influenced him.

It is, of course, possible that the father just found the experience of the court overwhelming and perhaps just thought there was no point carrying on objecting given the consensus from the rest of the family, and all the experts present. However there is no suggestion that was the case, his concerns were treated with courtesy and respect throughout the hearing and the possibility of simply feeling ‘out gunned’ is something that no doubt would have been checked during the adjournment.

If ED’s father did genuinely change his mind about the right way forward for his son (as I think is likely to be the case) then this hearing highlights a valuable role that can be played by the courts where resolution cannot be reached in the clinical setting and makes me reflect on what a court hearing can offer in this situation.

Perhaps he changed his mind because of listening to the expert evidence given under oath in a (virtual) courtroom, rather than in the context of a medical consultation? Or was it perhaps because of the skilled cross-questioning from counsel for the OS and the CCG in which the barristers kept asking for a ‘lay version’ of the information and systematically unpicked concerns. Indeed both barrister and the judge asked for clarification of ambiguous medical terminology relating to PDoCs, such as the difference between “responsiveness” and “awareness”, until they were satisfied with the explanation.

Perhaps what made the difference was the gravitas and expertise of the court or the evident experience and empathy of the barristers and the judge. 

It is possible taking the discussion out of the clinical setting (with whatever history there was between the father and those directly involved in his son’s care) may have been crucial.  Perhaps it gave the father reassurance about independent scrutiny over and above that offered by independent medical experts. Or perhaps what was useful was the fact that the legal hearing process created a very formal framework for decision-making with a very set of criteria for evidence, and, of course, a very real deadline?

I also wondered whether the father may have benefitted from the clear message that the judge was responsible for any decisions made in the courtroom – whereas family members sometimes feel they bear more responsibility for a decision made in an everyday clinical best interests meeting. 

Whatever the reasons for withdrawing his opposition to the CCG’s application, I hope that ED’s father, mother, sisters and others who care about ED can find some peace in this tragic situation. 

The three things I hope that clinicians, and indeed family members, reading this account might take away from this blog are: first, that it is possible for further tests and investigations to be contrary to a patient’s best interests; second, that it is important for proper assessment and best interests decision-making processes to be carried out in a timely manner in the clinical setting (following the guidelines from the BMA and RCP referenced above); and third, that if (after following such robust procedures) there remains doubt or dispute about a patient’s best interests then the Court of Protection should be welcomed and sought out, not feared and avoided.

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

1. SMART stands for “Sensory Modality Assessment and Rehabilitation Technique” and is a standardised assessment for PDoC patients.

Photo by Josiah Day on Unsplash