The most complex Covid patient in the world: Planning for a re-hearing after a successful appeal

By Celia Kitzinger, 30th November 2021

This hearing before Mrs Justice Theis on Monday 29th November was to sort out what needed to be put in place for re-hearing the case of AH, “the most complex Covid patient in the world”. 

The full and final re-hearing is listed for 7th and 8th December 2021 (starting “not before 11am on the 7th) before Mrs Justice Theis.  We will publish details about how to access the hearing once it has been listed on the RCJ listings, (i.e. on the evening of  6th December 2021), but it is likely to be held via MS Teams and be accessed in the usual way via an email to the Royal Courts of Justice court staff. 

Background

A 56-year-old woman, AH, has been an inpatient at Addenbrooke’s Hospital, Cambridge, since the end of December 2020, where she was admitted, on an emergency basis, suffering with severe symptoms of Covid-19. She no longer has Covid-19 but the virus has left her with extensive and serious brain damage.

Dr Chris Danbury, a Consultant Intensive Care Physician instructed by the Official Solicitor, reported back in July 2021 that she has cerebral encephalopathy, brainstem encephalopathy,  motor neuronopathy affecting the anterior horn cells or axonal degeneration and necrotising myopathy.  She was said to be in a minimally conscious state.

After a hearing before Mr Justice Hayden (blogged here), the judge ruled that continued ventilatory support was not in AH’s best interests (Cambridge University Hospitals NHS Foundation Trust v AH & Ors (Serious Medical Treatment) [2021] EWCOP 51).  

The judge said: 

I do not consider that AH’s best interests are presently met by ventilatory treatment in the ICU; ventilation is now both burdensome and medically futile; it is protracting avoidable physical and emotional pain.”

He allowed time for family members outside the UK to travel to be with AH and ruled: “I make it clear that ventilation should be discontinued by the end of October 2021

In fact, ventilation was not discontinued, because the family launched an appeal and the order was stayed pending the outcome of that appeal.

The appeal (blogged here) was successful, and reported widely in the media (e.g. “Relatives of ‘most complicated’ Covid patient await life or death appeal ruling”, “Family of woman with Covid allowed to appeal against end-of-life ruling”).  

The full judgment from the Court of Appeal is available here: Re AH (Serious Medical Treatment) [2021] EWCA Civ 1768

Grounds of Appeal

There were five grounds of appeal, only one of which was successful. 

  1. The judges did not consider that Hayden J had given insufficient weight to AH’s earlier capacitous decision (as recorded on a ReSPECT form) that she wanted “full escalation of treatment”.  That, said Moylan LJ, who wrote the main judgment, relates only to emergency care and treatment, and not to her current ongoing situation.
  2. The judges did not accept that Hayden J had failed to appreciate the overwhelming importance, to AH, of her religious and cultural values and the impact of those on her treatment decisions. They concluded that Hayden J did consider those issues and was entitled to conclude that “I am not prepared to infer that it would follow that those views would cause her to oppose withdrawal of ventilation in these circumstances …”
  3.  The judges did not accept that Hayden J had failed adequately to consider AH’s past and present wishes and feelings.
  4. The judges did not accept that Hayden J had failed properly to balance the inteference with AH’s right to life in accordance with the European Convention on Human Rights.

As Alex Ruck Keene puts it: “The Court of Appeal were at pains in this case to make clear that this was not a case where it considered that Hayden J had necessarily reached the wrong decision as to where AH’s best interests lay.”

The appeal was successful on the fifth ground of appeal.

5. The judges accepted that Hayden J’s visit to AH in hospital, and the use he appeared to make of it in his judgment, undermined the fairness of the process and the validity of his decision. Hayden J visited AH after the conclusion of the hearing and without subsequently reporting back to the parties about what transpired during that hearing, or his interpretation of that.  In his subsequent judgment he wrote: “I got the clear impression [AH] wanted some peace, she showed me that she did”.  This is capable of being interpreted as indicating that Hayden J considered that AH had given him some insight into her wishes.  This is problematic on two grounds. First because Hayden J is not properly qualified to make any such assessment, given AH’s complex medical situation; and secondly because in order to ensure procedural fairness, the parties needed to be informed about this and have the opportunity to make submissions.

On that basis – and that basis alone – Moylan LJ, “very regrettably,” came to the conclusion that Hayden J’s decision could not stand and must be set aside, saying that “There will need to be a rehearing which will have to take place as soon as possible”.

The key message of the appeal for those involved in the Court of Protection is a pressing need for guidance on judicial visits to the person at the centre of the case (e.g. Pressing need’ for guidance on judicial visits in CoP – McFarlaneThe black box of the judicial visit to P – the Court of Appeal’s concerns and requirements‘).

What happened at the hearing on 29th November 2021?

The hearing was listed for an hour, starting at 9.30am[1] – from which I deduce that it was slotted into the listings before the usual court sitting times in response to the Court of Appeal ruling that the re-hearing “will have to take place as soon as possible”.  

The family had new counsel, Simon Miller of Harcourt Chambers, acting pro bono through the Bar Pro Bono Unit (without, as yet, a solicitor). Three of AH’s four children were in court, as well as her sister.

As before, Nageena Khalique QC continued to act for AH via the Official Solicitor, and Katie Gollop QC continued to represent Cambridge University Hospitals NHS Foundation Trust.  

The Trust

Katie Gollop QC (for the Trust) said that to “start from the end and work back[2], the final hearing had been listed for 7thand 8th December 2021, although she understood there was an application from the family to push that back.  Before those dates, it would be necessary to get updated medical evidence, provide the full set of medical records since the last hearing to the parties, and give the family the opportunity to update their witness statements. 

Additionally, the family were asking for a capacity assessment of AH to be performed by someone outside the Trust, and they would like to be involved in the choice of assessor.

She added that the ICU at Addenbrookes is “at capacity at the moment” and that “a Winter surge is anticipated by 13thDecember.  Preparation for more capacity is being made.  If it’s in the best interests of AH to be ventilated the hospital will continue to do so, but that is the situation, with intense pressure on resources and concomitant intense pressures on staff, and that’s why we’ve asked for an early hearing”. 

The Official Solicitor

Nageena Khalique QC (for AH) said “We are going to propose updated evidence from Dr Danbury.  He’s available on 8thDecember only, for oral evidence. He’d require records from July onwards by the end of tomorrow midday.  He’s indicated that he can then provide an updated report, possibly by the end of Friday but certainly by 9am on Monday 6thDecember”.  

She listed some of the medical records he’d need (CAT scans, nerve biopsy, EEG and so on) but said he was “working on the assumption that he does not need to see her unless there is something in the records that alerts him to the contrary”.  

She suggested that, if the family want another capacity assessment, then (although “the Official Solicitor doesn’t see the need for one”) Dr Danbury as an independent expert, might be asked to see if there’s anything in the records that gives rise to the need for a further capacity assessment.  She suggested, too, that the family could send Dr Danbury the videos they have made which give them hope that their mother might be recovering further, and might even have capacity to make her own decisions.

The family

Simon Miller (for the family), said he’d only had a chance to speak to family members for the first time that morning. 

He said there was a broad measure of agreement with the proposals from the Trust and the Official Solicitor.  In particular, the family felt that the videos they’d made would be helpful to Dr Danbury.  

He gave an example of a recent event which they saw as evidence of improvement: “they were joking with their mother and she laughed and giggled back.  They believe there is a response that is coming back from her that they haven’t seen before.  It may be small but it is important to them that there is an engagement from their mother when she hears their voices and, indeed, what they are saying”. 

He raised the question as to whether the final hearing might reasonably be deferred with reference to “the well-worn mantra that justice must not be sacrificed on the altar of speed” (a near quotation from para. 40 Mrs Justice Pauffley in Re N (A child) [2014] EWHC 270 (Fam).   

He said that the family would need time to digest the report from Dr Danbury – and especially if it was only provided first thing Monday morning (with a hearing on Tuesday and Wednesday) the court should “exercise some caution”.  There needed to be time allowed for them to reflect on their response, not just individually, but to share their views within the family as well.

There was also an issue with an application for a Property and Affairs Deputyship which Simon Miller raised and Nageena Khalique supported,  saying that there was “financial hardship for the family”.  The Deputyship, she said,  “was going to be dealt with by Mr Justice Hayden but essentially it got stalled, and in fact it would be quite straightforward for the court to make this order, dispensing with some of the procedural hurdles.  In the circumstances the Official Solicitor supports the making of a Deputyship order so that property and affairs matters can be dealt with as a matter of urgency.”

The judge seemed favourable to this position.

Simon Miller said, “Thank you. That’s very reassuring to the family.”

Timetabling matters and other details

The judge asked for a written document to accompany the videos to be sent to Dr Danbury (and acceded to Simon Miller’s request that this is not “formalised within a COP statement”).  

Katie Gollop reported new information she’d just received that a formal capacity assessment had been undertaken on Friday and that “nobody in the Trust considers AH has regained capacity to make her own medical decisions”.  Apparently Simon Miller’s clients (AH’s children) had not seen this capacity assessment.

There was some further discussion of timetabling: Dr Danbury’s report will hopefully be received by 4pm on 3rd December and the family evidence (having read it) will be due at 2pm on 6th December.  If Dr Danbury’s report is not available until 9am on 6th December then the family evidence is due at 9am on 7th December.   The hearing will be listed to start “not before 11am to give everyone time to absorb the documents”. 

It’s planned that the treating clinicians will give evidence on Tuesday, Dr Danbury on Wednesday morning, and then the family after Dr Danbury  (although Katie Gollop suggested that it may also be possible to hear some family evidence on the first day of the hearing).

The judge sought to establish what it would be necessary to hear in court: “The previous medical history was dealt with in detail and was tested in court. It seems to me we don’t need to go back historically because of the detail in the judgment”.  This seemed agreed.

Simon Miller said that Paragraph 69 of Mr Justice Hayden’s judgment “would appear to be the main issues for this court to consider”.

69.              Some key facts:

                                                            i.            AH is currently being cared for in a critical care unit and is dependent on mechanical ventilation, continuous nursing care, nutrition and hydration delivered via a nasogastric tube, and receiving various medications. Dr B described the burden of the ventilation on AH as the equivalent of being compelled to run a marathon every day;

                                                         ii.            AH requires frequent suctioning of her trachea to control respiratory secretions, this is, all agree, extremely painful (my emphasis). She is turned frequently to avoid pressure lesions and a hoist is used to allow her to sit in a specially adapted chair. The burden of the turning means that her rest is constantly disturbed. Added to this, is the inevitable noise generated in the ICU, which I witnessed and was rather surprised by on my own visit. AH has a urinary catheter and a rectal tube to manage faeces. She is unable to move other than small movements of her head and neck;

                                                       iii.            The care for a patient in this condition is, in Dr A’s words “associated with a loss of dignity and a total loss of autonomy – she is unable to provide consent and cannot participate in any meaningful choice about how she is treated. This extends from decisions of the utmost gravity, such as withdrawal of treatment, to very modest choices like whether her head faces the window so that the sun warms her, or whether her head does not face that way because the light hurts her eyes.”. I signal that, in my judgement, this weighs very heavily both in evaluating the quality of AH’s existence and in assessing how she would regard her present circumstances;

                                                        iv.            It is impossible to reverse, treat, or ameliorate any of the effects of the damage to her peripheral nervous system or brain;

                                                          v.            Until recently the treating team were concerned that if her consciousness level improved, she may become increasingly aware of her condition and its consequences and that her distress would worsen. They wished, if possible, to reach a consensus about her best interests before this occurred. They were concerned that whilst she may never recover capacity, the countervailing disadvantage of neurological improvement might be that her increasing awareness would be associated with inconsolable distress. It is Dr A’s settled view that such a point has now been reached. Ms C (senior nurse) also agrees with this as does Dr B. Indeed, in my judgement there is universal professional consensus on this important point;

                                                        vi.            During examinations, and for some time now, AH has become distressed, cried and appeared anguished. This occurs on every occasion. As I have already mentioned, this is reported to be very distressing to those who are treating her, particularly the nurses, because it makes them feel as if they are causing rather than alleviating discomfort;

                                                     vii.            The above describes a parlous existence but into this misery are the shafts of sunlight created by the presence and reassurance of her family. This is plainly both meaningful and important to AH, but it does not abate her physical and mental discomfort which continues in their presence. This I also saw on my visit as well as M and A’s sensitive efforts to ameliorate it. (I was shown a video of AH having a visit from her grandchildren. Her bed had been pushed out into the garden. She was undoubtedly happy to see them. I am also constrained to record that both the eldest son K and Ms C told me that AH had been initially resistant to the visit because they both strongly sensed she did not want her grandchildren to see or remember her in her present state);

                                                   viii.            Dr A is “now deeply worried that her awareness has reached a point where all she is able to focus on is fear, anxiety, and hopelessness”. He considers AH’s “recall is minimal” and speculates “it is possible that she relives the discovery of her condition repeatedly” (with respect to Dr A, whose evidence I have found to be extremely impressive, I am not prepared to follow him in that last speculation, for which I can see little, if any, forensic base);

                                                        ix.            Dr A concludes that “I cannot reasonably believe that she would choose to live in this way, unless there was a clear signal from prior discussions with her family, or evidence of any previous statements she may have made or written”.

Capacity

Katie Gollop was still concerned about the possibility that the family position would now be that AH has capacity to make medical decisions for herself – and the burden this might place on clinicians if their evidence was required to counter this since “they have a lot on their plates at the moment”.  She said:

I wonder if it would be fair to ask this.  If the capacity assessment on Friday is emailed by 11.30 this morning, can the family notify us by 4pm today whether it is their position that AH now has capacity to make the decision in question, and if that is their position, whether there are factual aspects of the assessment documented in the record that they wish to disagree with.”

After some to-ing and fro-ing, it was agreed that the family would do so by 9am the following morning.

As I left the hearing, the judge was asking whether there could be an agreed note about the clinical picture at the time of the last hearing (or at the time of the judgment).

All this detailed planning – what exactly needs to be provided by what deadline and by whom – is part of preparing for a full hearing, especially where (as here) matters are contested.  

Hearings like these feel relatively pedestrian: they lack the intrinsic interest we all feel about the ethically weighty decisions made in final hearings.  

But they are the essential scaffolding upon which those final hearings depend.

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia


[1] The hearing continued beyond 10.30am – though it seemed to be winding down – but I left at 10.30am for another hearing, so am not able to report on anything that happened after then.

[2] We are not allowed to record hearings, so all quotations of things said during the hearing are as accurate as I can make them, based on rapid typing during the hearing (I do not have shorthand), but are unlikely to be verbatim.

Photo by Clark Gu on Unsplash

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