Cancer treatment in the face of unknowns and expert disagreement

By Ruby Reed-Berendt, 18 October 2022

A man (MB) in his 30s has been in hospital (and deprived of his liberty) since May 2022 after his mental health deteriorated. Although there remains uncertainty as to the cause of his poor mental health, there is a working diagnosis of T-cell lymphoma of the nervous system. Newcastle upon Tyne NHS Foundation Trust seeks a declaration that he lacks capacity to make decisions regarding treatment of the suspected disease, and that it would be in his best interests to receive chemotherapy. 

By the time the case came before Mrs Justice Morgan (COP 1398600T) on 27^th September 2022, there was agreement between the Trust and MB’s litigation friend, the Official Solicitor, that MB lacks capacity to make decisions about treatment for his lymphoma. The sole issue presented for consideration by the court is whether MB should receive two cycles of chemotherapy. Whilst this is not an entirely novel form of treatment, its proposed manner of delivery is. Due to the extreme changes in MB’s condition and his reported level of “emotional dysregulation”, it would need to be given in intensive care (ICU), with MB intubated, ventilated and sedated. The parties agree that treatment could not be delivered in a less restrictive setting and could constitute a deprivation of MB’s liberty. The full facts are set out in Morgan J’s judgment which is now available: Newcastle upon Tyne NHS Foundation Trust and MB [2022] EWCOP 43.

The hearing was carried out in a hybrid format (some parties were present in a physical court room and others joined remotely). I observed the case online across two days and heard evidence presented to court from:  

• MB himself, who spoke with the judge in private at the start of the hearing, and “does not believe he has cancer or has ever had cancer”
• Members of MB’s family, who relayed their views via Miss Emma Sutton, counsel for MB via the Official Solicitor, towards the end of the second day. 
• Six medical witnesses, whose evidence formed the bulk of the hearing. The six witnesses were consultants working in haematology/oncology, intensive care, and psychiatry. In each speciality, one witness worked for the Trust, and the other was an independent expert instructed by the Official Solicitor. 

Throughout the case, what struck me was the extent of uncertainty and unknowns in this case, and how “finely balanced” the decision was. It also meant that the expert evidence was far from unanimous, with numerous points of distinction, and each consultant came from their own perspective based on their past expertise, and their experience of interacting with or examining MB. These opinions were revealed through examination-in-chief and cross-examination, a process where counsel for the Trust and the Official Solicitor ask questions of the witnesses and seek to challenge their opinions. As the judgment outlines the facts in detail, in this blog I focus instead on how these views were drawn out through counsel examination.  

Diagnosis and prognosis 

The first major uncertainty surrounded MB’s diagnosis of T-cell lymphoma, which was the focus of the haematology evidence. It was described by Mr Rhys Hadden, counsel for the Trust, as a “best guess”, but no other alternative diagnosis was considered likely by the parties. On top of this uncertainty, T-cell lymphoma was described as very rare and especially within the brain. MB’s cancer was progressing much slower than most other cases and was seen as atypical and as such the witnesses were uncertain about prognosis.  

The first witness to give evidence was Dr Nicholas Martinez-Calle, consultant haematologist and an independent expert. In his evidence he emphasised that T-cell lymphoma was “rapidly growing and aggressive” and that having looked at the evolution of MB’s symptoms and the decline his in “psychiatric behaviour”, his view was that the condition would be lethal within 4-6 months if treatment was not given. Miss Sutton in her examination-in-chief pressed him on whether MB’s deterioration was actually caused by his illness: 

Miss Sutton: Could an alternative reason for MB’s mental health decline be that he’s been deprived of liberty and wants to go home?  

Dr Martinez-Calle: There is clearly an organic cause. Radiological imaging demonstrates there are changes in his brain that could account for his behaviour. The psychiatric manifestations are novel and a consequence of the lymphoma.  

This questioning was helpful in exploring the other causes for MB’s distress. Mr Hadden also pushed Dr Martinez-Calle in cross-examination on his view on MB’s prognosis, which also drew out the atypical nature of his progression:  

Mr Hadden: If MB’s current condition were not treated, you said the prognosis is effectively 4-6 months. What is your opinion based on? 

Dr Martinez-Calle: It is an estimation that is likely to be accurate. The survival of brain lymphomas if left untreated is normally very short, weeks probably. I am being conservative because I know the progression of the disease has been slow compared to what we are used to, but it is expected to continue progressing into sensitive aspects of the brain that will risk his life. Although the disease might not grow in volume, it might grow in sites that will cause rapid deterioration.  

The Trust haematologist, Dr X, was the last witness to give evidence and it was clear that she had reflected carefully on the evidence she had heard (she attended most of the second day remotely, so had the benefit of hearing from other witnesses). Based again on MB’s unusual progression, her view was different – and this was drawn out through Mr Hadden’s examination in chief: 

Mr Hadden: what is MB’s prognosis if the cancer is left untreated?

Dr X: It is hard to say. This is a working diagnosis of lymphoma causing damage to brain tissue. If we assume we are correct, we are dealing with a low-grade end, cells that divide slowly. I don’t think this is typical in any sense and it is clear from psychiatric assessments and history from family that he has been not well for 18 months, which is quite slow for T-cell lymphoma. So prognosis without treatment is likely measured in short years using what has already happened.  

Mr Hutton: We have heard evidence of psychiatric deterioration since hospital admission in May. Have you seen further deterioration?  

Dr X: I would say we have not. I would agree that his behaviour is different now. The question we are wrestling with is whether that is due to the disease or effect of environment and restrictions of liberty. I would concur there has been a change.  

Mr Hadden: So your view is different from that of Dr Martinez? 

Dr X: It is difficult. This is not typical and, normally, for nervous system lymphoma rapid deterioration is more normal. We just haven’t seen that and I’m inclined to think a slower prognosis.  

What both exchanges demonstrated just how uncertain things were for MB in terms of the impact of his illness on his life, and also how those assessing him evaluated his behaviour in different ways; where Dr Martinez-Calle saw deterioration caused by disease, Dr X was more open to alternative causes. 

The proposed treatment

The second uncertainty surrounded whether the treatment would actually work. Whilst the proposed treatment is effective in B-Cell lymphoma, it is novel and “one could call experimental” for this type of cancer. Mr Hadden also noted that approval was being sought for the initial phase of HDMTX and if successful “this won’t be the end of it” and active consideration will be needed as to what should happen next.  

A figure of 20% chance of success rate was referenced throughout the hearing and in the judgment, but each of the experts brought a differing perspective on what effectiveness and success would look like and how this figure had been arrived at. Dr Martinez-Calle stated the 20% was an “extrapolation” of the B-Cell lymphoma literature, and considered success to be “radiological improvement, survival and neurological improvement”. He also suggested that treatment would be useful in that it would help demonstrate whether the diagnosis was correct, as if it was not the treatment simply would not work. He certainly appeared to be the most optimistic about proceeding with the treatment and attempting more aggressive forms of chemotherapy after it. It was however clear that the 20% figure was by no means a certainty and may have been produced to assist the court more than anything else, as was drawn out in Miss Sutton’s cross-examination of Dr X:

Miss Sutton: The 20%, where did that come from?  

Dr X: You’ll appreciate this is difficult. I tried to estimate the incidence of this kind of disease as we don’t have a lot of data, about 1-1.5 cases per 10 million population per year. Even B-cell is rare (170 per year). We are in the realm of the case report here, and I am aware of 1 other case reported. We work closely as a team as you get a spectrum of views. So the 20% comes from the question of have we got the diagnosis right or wrong, if the treatment works or doesn’t, if there is brain recovery or if there is none. So whilst I’m confident the T Cells will die, the chances of that happening are 70-80%, whether that reflects in a better outcome is something we will find out.  I used the word “trial of therapy” in my statement and I would stand by that. It was a number put forward to give some idea to the court, but you are right that it is an opinion.”  

Miss Sutton also questioned Dr X on why she felt this treatment should be embarked upon now instead of waiting a little longer: 

Miss Sutton: Why not watch and wait if MB’s prognosis is in years?  

Dr X: The rationale is, what are we watching and waiting for? I don’t see a better window to do this. We need to decide that either there is a rationale for proceeding or that there isn’t. My worry about deferring the decision is it becomes less and less reversible. The caveat to that is if we have the diagnosis wrong, but as you can see from the papers we have had an array of experts and specialties give their opinion. 

Dr X noted that if the diagnosis is correct and the treatment works, the question was then how much brain injury was reversible. To her, “Success would mean arresting progression and improving cognition to some degree. Level of functioning, being able to recognise family, seeing how much support MB might need with everyday life even in a successful outcome.” She felt that if improvement lasted five years and MB could have an improved quality of life out of hospital, it would be a success. 

Dr Y, consultant liaison psychiatrist at the Trust also supported the treatment going ahead, focusing on the question of whether the damage to MB’s brain was reversible. This was brought out most clearly in cross-examination by Miss Sutton. When asked about the chances of recovery, Dr Y stated: 

“We haven’t been able to do more detailed testing to work out what areas of functioning are affected. Dependent on this, global functioning might improve but won’t be back to pre-morbid function and likely there will be residual difficulties. Early symptoms include poor judgement (leaving cooker on, walking into the road without looking), they relate to frontal lobe atrophy and might remain. But memory might improve, as might functional tasks.”She however concluded it would be “unfair not to give him a chance”, with her focus on the aims of the treatment to not only improve his delusional beliefs, but also prevent “deterioration of a wider cognitive dysfunction and executive function.” Her evidence on quality of life was that if the treatment could allow him to function more independently it should be attempted.” 

The views of the intensive care specialists were more mixed. Dr Z, consultant anaesthetist at the Trust, supported treatment but emphasised the chances of success were low, again citing the 20% figure: 

“I think he is in an extremely unfortunate position no matter what happens. If we don’t offer treatment, he is extremely unlikely to be better off, and much more likely to develop further problems and die. He is in a restricted environment already, the options he has will be more or similarly restrictive. If we do offer chemotherapy, chance of benefit is low but it is measurable. I think it’s less than 20% and his tumour may already have caused fixed deficit so I think that is his only chance. He probably won’t make a full recovery even with chemotherapy. I don’t think any of us are going into this with our eyes closed. We know doing nothing is an option and there is a spread of opinion in intensivists. The majority opinion is we should offer this trial, it is less likely to benefit him than not, but I feel it is in his best interests.”  

Dr Chris Danbury, consultant intensive care physician (the independent expert), took the opposite view, considering that the case was finely balanced but he felt that “we will probably do more damage to MB by admitting him to intensive care”. He focused heavily on the risks of admission to ICU and the potential mortality from infection. His emphasis was on MB’s quality of life, rather than its duration, and the lack of certainty in this case led him to conclude treatment should not proceed: “If I was more certain about the benefits of chemotherapy on his neurocognitive state, I would be more certain. My understanding of the imaging is it’s sufficient to explain symptoms, so I am not convinced the chemotherapy will make a difference.” 

The picture I gained from hearing these competing views was the complexity of assessing what benefit MB might derive from treatment, what his life would be like, and whether this made the risks worth running. Dr Danbury on the one hand was significantly concerned about the chances of infection in ICU and the impact this would have on MB’s quality of life. Dr X felt that even if there were “marginal gains” (as Miss Sutton put to her), that this still needs to be attempted. This chimed with Dr Y’s view that MB at least ought to be given a chance to get better. It was interesting to see in the judgment that the judge aligned with the latter view and adopted a human rights perspective to support her approach: 

“I accept that having the treatment may if successful prolong his life and that the starting presumption is protection of his life; that the right to life carries with it strong weight and that even and although the estimate of success is put at 20 % within the context of Article 2 EHCR that is not negligible. Even the most pessimistic of the evidence before me does not suggest the treatment is futile.”

§88, Newcastle upon Tyne NHS Foundation Trust and MB [2022] EWCOP 43.

One ITU admission or two? 

Whilst the parties agreed that the treatment would need to be take place in ICU, the witnesses also provided differing perspectives on whether both cycles should be attempted in a single ICU admission (i.e. up to 15 days of continuous ventilation and sedation) or two admissions of approximately 5 days with intubation and extubation (the placement and removal of a tube in an individual’s windpipe to administer drugs and oxygen) and the beginning and end of each of those periods (and a gap of 1-2 weeks between cycles). The delivery of treatment in ICU is considered to be particularly ‘novel’ and had not been attempted in the Trust before. The psychiatric and intensive care evidence focused heavily on what form of ICU admission was best, with the witnesses again offering slightly different perspectives. 

When it came to the intensive care specialists, Dr Z favoured two admissions based on MB’s youth and physical fitness, and Dr Danbury preferred a single admission based on an increased risk of MB experiencing Post-Traumatic Stress Disorder (PTSD) and delirium. To me, a key challenge here seemed that MB was not being admitted to ICU because he needed life-sustaining treatment: he was being admitted as a healthy young man in order to give chemotherapy under sedation, and for Dr Z, this changed the risk profile and pushed the discussion further into hypotheses and ‘unquantifiable’ risks. For example, when Miss Sutton pointed to Dr Danbury’s differing opinion, Dr Z responded: “It is not accurate to equate this patient to standard ICU admission. The question we should be asking are what the extra risks are for this patient of intubation/extubation.” 

Dr Danbury’s clinical focus however was on the psychiatric evidence and his concern that MB’s mental health challenges would be made more difficult by the intubation and extubation process. This led him to believe one admission would be preferrable if the treatment were to be attempted.  In spite of their disagreement, both recognised that there would be a ‘spectrum of views’ within their specialty and that there was perhaps no right or wrong answer. 

Whilst both the psychiatrists favoured one admission, their focus on the risks of two admissions was also slightly different, and the reasons for this came out through cross-examination when Dr O’Donovan, the consultant forensic psychologist (the independent expert) was questioned by Mr Hadden. The differing opinion on PTSD is reflected in the judgment, but another point which was discussed in the hearing was the potential damage to MB’s therapeutic relationship with his treating team, especially if he became aggressive and had to be restrained. Dr Y had previously given evidence that she was not convinced that MB recognised his clinical team and that she was “not sure therapeutic relationships are fragile”. This led to the following exchange with Dr O’Donovan which clarified why she considered this to be a risk: 

Mr Hadden: Dr Y was less convinced [about damage to the therapeutic relationship] as she was less certain he recognised his clinical team and he maintains the belief he works on the ward.  

Dr O’Donovan: It is important to look beyond the individuals and the environments. He does feel a degree of safety in that the episodes of distress are short. Whilst not being able to identify people by name, he feels on same level they are not complete strangers, because he responds quickly to the de-escalations that have been tried.  

The psychiatric evidence had a clear impact on members of MB’s family who attended the hearing, and when Miss Sutton conveyed their views, their concern for delirium came across strongly. This was hardly surprising given that both Dr Y and Dr O’Donovan viewed delirium as almost a certainty, but the family’s take on it was an important reminder about how hard this information must be to hear.

Concluding reflections

The assessment of best interests in this case appeared to be particularly challenging because of the number of uncertainties – the diagnosis, the chance of the treatment being successful, the manner in which the treatment will be delivered, the chance of recovery. The involvement of three distinct specialties with different expertise, drawn out through examination in court, provided the judge with a significant amount of information for her decision, even in the face of considerable ambiguity. Five out of six of the experts came to the conclusion that proceeding with treatment was the best course of action because it aimed to prevent further deterioration, and some of them did this through reference to what they would want for themselves, or for a family member. As Dr Martinez-Calle summarised: 

“I try to look at cases where the patient lacks capacity and think what we would do if we could have a conversation with the patient and what we would say… It is what I would do in a similar case if they had capacity. The decision to treat is very clear, and the question for the court is whether the means we need to give the treatment are proportionate.”

As noted above, Dr Danbury did not share this view and felt if he had been approached by haematologists in his hospital, he would not offer treatment. He focused in particular on MB’s quality of life, because “this is not curable, so trajectory at the end is generally applicable but you are moving the time.” 

It was also clear that all parties felt the burden of the decision keenly. It seemed to me that the treating clinicians were grateful to the court process for allowing them access to independent expert opinion and an opportunity to “thrash things through”. I was struck by their compassion for MB and their evident wish to do the right thing for him, even if identifying this was incredibly difficult. The clinicians were also clear in their evidence that they would be happy to proceed in accordance with what the court determines and would be open to the options of one or two admissions to ICU. Here, I felt the hearing also served a purpose of not only making a decision, but allowing someone independent to make the decision instead of the treating team or the family. A potential anxiety or guilt over doing the wrong thing was conveyed clearly by Miss Sutton when she provided the family’s view:  “[Relative A]’s personal view is the treatment should be attempted and she would like him to try to have it. She wants no responsibility to be placed on her shoulders so she would have a guilty conscience.”

To this, the judge quickly responded that although she wanted to know what the family thought and felt, “it is a decision for me, not for them. Nobody is asking them to make a decision and it is not a decision for them to make.” 

Although I could not see how the family in the hearing reacted to her response (their cameras were turned off), I hope that her clear response offered them some of comfort. 

The medical evidence was discussed throughout the case, as was how to manage MB should he resist the treatment (e.g. with the involvement of a liaison psychiatry team in the acute hospital). It was notable that it was discussed at far greater length than the views of MB and the views of his family. This is perhaps unsurprising given the complexity and variety of medical issues, and that MB’s current views were not (based on the judgment) considered to represent his true views. Similarly, before the final witness gave evidence, the family were largely supportive of treatment going ahead. MB’s family members suggested that MB would want the treatment because he would want to live for his family, and it is this that the judge appeared to rely on when she ascertained that this would be his wishes if he had capacity (paragraph 89 of the judgment). However, I wondered if there could have been more opportunity to consider what MB’s views would be if he did have capacity in the oral hearing. I did not feel that any real picture was given in court of what kind of person MB was, his feelings about his family and other views which might be relevant to the best interests decision. 

In the face of all this uncertainty, the judge was left with an unenviable task of deciding what to do, and she came down in favour of treatment through a single admission to ICU. 

This may not be the end of court proceedings for MB.  If the treatment is successful (and if the success is quantifiable, which seems far from certain), it seems likely that the matter will return to court at some point in the future. Given the fine balance of this case, it may be impossible to ever know if the ‘right’ outcome was reached. 

My main hope is that MB’s family have been relieved of any burden they might have felt, and although the court process must have been incredibly hard for them to hear, they are able to enjoy whatever time they have left with him. 

Ruby Reed-Berendt is Research Associate and PhD Candidate in the School of Law at the University of Edinburgh.  She tweets @RubyReedBerendt