University Hospitals Bristol NHS Foundation Trust v ED
Judge: Moor J
Citation:  EWCOP 18
In this case, Moor J had to consider whether treatment escalation would be in the best interests of a woman with learning disability. The decision was made in the context of the COVID-19 pandemic (and the hearing was conducted remotely in consequence), but the reasons why it was said that escalation (including admission to the hospital’s Intensive Care Unit and attempting any form of resuscitation) would not be in her best interests were not related to the pressures placed on the hospital by the pandemic. The judgment was delivered extempore – i.e. ‘live’ at the end of the hearing, rather than by way of written judgment provided later.
The case concerned a 35 year old woman with quadriplegic Cerebral Palsy and severe learning difficulties. She had no verbal communication and communicated with facial expressions. The Trust’s case was that she could communicate basic feelings, such as whether she was comfortable or distressed. Her mother disagreed and believed ED communicates to a higher extent than that. Her mother also believed that ED had capacity to make the relevant decisions.
ED had lived at home throughout her life with her mother in the West Country. She had had a short ICU admission when only a matter of months old, and none again until 2013. Her medical position had become more complicated since 2018, and she was in hospital in March 2020, having been admitted with pneumonia; her respiratory condition deteriorated. She was initially given non-invasive ventilation by a hospital ventilator almost 24/7. By 17 March 2020, she had improved with intravenous antibiotics and she was only, at that point, having non-invasive ventilation for approximately 3 hours per day plus at night. Nevertheless, the clinicians considered that she should have a tracheostomy (initially performed in 2013 and then removed in 2018) reestablished, but her mother was not keen. On March 2020, ED’s position deteriorated again. She became ventilator dependent and antibiotics were again prescribed. The tracheostomy was then performed, and there was then a significant improvement. ED was back on the Respiratory Ward, and had improved to the extent that the ventilator was being removed for increasing periods of time.
There were, however, no plans for her imminent discharge from hospital, and the Trust were concerned that that there might be a further deterioration in the future. It therefore brought an application to court for declarations that:
- it is lawful, if there is a deterioration in the condition of the First Respondent, Ms ED, (a) not to provide CPR or any other resuscitative measure and (b) not to admit her to the ICU Unit or provide an ICU level of care, even if, absent this order, she would meet the criteria for ICU admission.
The Trust’s reason for seeking the declarations were to avoid ED from undergoing extensive and potentially invasive medical treatment that the Trust considered not to be in her best interests. It submitted they would have a low prospect of success and that, if successful, would likely lead to a worse quality of life.
Moor J set out the evidence before him in considerable detail, concluding that ED did not have capacity to make the material decisions. As to best interests:
- In her closing submissions, Ms Watson urged me to make the declarations that have been sought. She said that, in particular, it was not appropriate to put ED through the sort of ICU treatments that would involve, for example, vasoactive drugs, renal replacement therapy, ICU level ventilation, treatment that requires central venous access, or cardio- pulmonary resuscitation. She said that the Trust will continue to provide the highest level of treatment that they can give in the current Respiratory Ward, but they should not have to give treatment that is burdensome, unpleasant and painful. This should ensure that, when the time comes for ED to pass away, it should be in a dignified manner with all appropriate palliative care at that point. I accept that submission. I take the view that the Trust’s position is correct. I endorse the position.
- Mr. Patel QC for the Official Solicitor agreed and adopted the same position. He said that there was quite compelling medical evidence of the trajectory downwards. The position is diminishing episode by episode and that, at some point, a line has to be drawn. He accepted the evidence of the three doctors that the line should be drawn from now on. And that any further treatment should be in the Respiratory Ward and there was, he submitted to me, compelling medical evidence behind that position. I accept those submissions.
- Ms Butler Cole QC asked me to take into account the other factors in ED’s life. And, of course, I do so. I entirely accept that she has had a good quality of life with her mother over the years. I have read with great care of the trips to various festivals that she has made. I have seen the pictures of her with what might be described as celebrities. I understand the enjoyment that she and others have had out of her life. And of course, I as the Judge very much want her to get better from this current infection that she has had. I am pleased to have heard of her improvement in the last few days. I hope that it will be possible for her to return home. I accept entirely that she should continue to have a good level of treatment as is provided to her in the Respiratory Ward. I am quite sure that that is in her best interests.
- What I do not agree, and I come to this with something of a heavy heart, is that it is in ED’s best interests to have the far more invasive treatments that are involved usually and regularly by ICU admission. In particular, I cannot see that it is in her interests to have CPR or such other resuscitative measures at this point of time. In the healthy, such measures are extremely painful, distressing and difficult to administer. In somebody with ED’s conditions, I consider it would be quite intolerable and burdensome. And I am absolutely satisfied that I should indeed make the declaration that I have been asked to make as to CPR and any other resuscitative measures.
- I have also come to the conclusion that I should make the declaration about future admission to an ICU Unit. I make it clear, and have already done so, that by making this order, I do not consider it to be obligatory. I am saying that it is permissory. It will be up to the doctors on the ground to decide what to do in each particular circumstance. But assuming that there has been no significant change of circumstances, I take the view that it is right that I should authorise no future such admissions. It is quite clear to me that many of the things that would be involved in that, such as the renal treatment or the treatments via the neck, are likely to be extremely burdensome to ED and to provide no significant benefit to her whatsoever.
- It is of course sad to come to that conclusion. I very much hope that she will not get ill again and that we will not have to get to the point of needing such treatments. But I am clear that, if she does so, the treatment that she should have, all other things being equal, is on the Respiratory Ward. It will be the best possible treatment on that ward. It will include ventilation. It will include antibiotics. It will include physiotherapy. But it will not include the extra active involvements of the ICU Unit. That in my view will not assist her, will harm her and cause her pain and is likely to be entirely futile.
It appears from the judgment that Moor J had, essentially, concluded at that point, but that Counsel for ED’s mother then addressed him further upon s.4(6) MCA 2005:
- Ms Butler-Cole QC then submitted to me that I had not addressed at all the matters in relation to s4(6) of the Act concerning not just the expressed view of the person or wishes and feelings but also the beliefs and values that would be likely to influence their decision if they had capacity and the other factors they would be likely to consider. She said that those were matters that she in her submissions about the evidence or lack of it as to whether ED was the sort of person who would take a less than 10% chance of survival or not.
Moor J then responded at the hearing and subsequently:
- This is already a very long extempore judgment, but I entirely accept that I did not deal directly with the point in relation to section 4(6). I take the view that ED would recognise that the treatment she is getting on the Respiratory Ward is excellent treatment and that for her to have to go through the additional invasive treatments of the ICU and CPR would not be in her best interests because it would be futile in the long term and it would be likely to cause her pain and suffering and not achieve any advantage. And that is the reason why I have come to the conclusion I have.
- Although I did not make the point at the time, I add, when approving this note of the judgment, that it is not as though I am authorising only palliative care going forward. I am approving these declarations on the basis that ED will continue to get a very high level of care on the Respiratory Ward. I take the view that this makes this case entirely different from other cases referred to by counsel and that this is something that ED would undoubtedly take into account pursuant to section 4(6).
The decision in this case – as in all decisions of the Court of Protection – intensely fact-specific, and those wishing to understand the underpinning clinical reasoning in more detail should review the evidence as set out by Moor J. However, four broad points of more general importance arise:
- ICU admission will be crucial in certain cases – essentially to give the person a fighting chance – but as Moor J highlighted, it is something that carries with it its own serious traumas, and is not to be contemplated lightly in any case;
- The point made at paragraph 33 is of very significant importance. Moor J was not declaring that it would be unlawful for ED to be admitted to ICU, i.e. barring her admission there. Rather, he was saying that, if the doctors decided at the time that her circumstances were the same as they were at the time that the case was before him, then they would not be acting unlawfully by not admitting her. This may seem a distinction without a difference to non-lawyers, but has a real significance. Just as with a DNACPR/DNR decision (which, in effect, Moor J was making by his declaration in that regard), the declaration of Moor J in relation to ICU served to guide the doctors as to their actions in the event that a particular event came to pass, not to prevent them exercising their clinical judgment at that point;
- Some may think that Moor J’s approach to ED’s wishes, feelings, beliefs and values did not properly comply with the injunction of the Court of Appeal in Re AB (Termination)  EWCA Civ 1215 that: “[t]he requirement is for the court to consider both wishes and The judge placed emphasis on the fact that AB’s wishes were not clear and were not clearly expressed. She was entitled to do that but the fact remains that AB’s feelings were, as for any person, learning disabled or not, uniquely her own and are not open to the same critique based upon cognitive or expressive ability. AB’s feelings were important and should have been factored into the balancing exercise alongside consideration of her wishes.” Some might think that, at a minimum, Moor J should have undertaken the exercise of considering whether there were, in fact, any reliable indicators of these factors, or whether what FD was relaying reflected her own (entirely legitimate) feelings – i.e. the approach taken by Hayden J in Abertawe Bro Morgannwg University Local Health Board v RY & Anor  EWCOP 2;
- It might be thought striking that the Official Solicitor agreed with the Trust’s application, without reference (at least in the transcript of the judgment) as to ED’s wishes, feelings, beliefs and values. This could have been on the basis that the Official Solicitor had undertaken the exercise from the RY case and considered that there were no reliable indicators. However, some might feel that this is an example of another case where the Official Solicitor was being asked to do the impossible, i.e. both represent ED and provide the court with ‘neutral’ assistance in the resolution of what might be in her best interests. For more on this, see this article here.
 Note, Tor having been involved in the case, she has not contributed to this report.