A best interest decision about life-sustaining treatment for a person with profound neurological injury following COVID-19 infection

By Jennifer O’Neill, 20th July 2021

At relatively short notice I was afforded the opportunity to observe a hearing (COP 13783897) before Mr Justice Hayden.  The case (in the ‘urgent hearings list’ on 14^th July 2021) concerned the proposed withdrawal of life-sustaining treatment from a lady in her mid-fifties (AH) who, having suffered severe neurological complications of COVID-19, may lack the capacity to make her own treatment decisions.  

This was the first time I’d observed a hearing in the Court of Protection and the first time I’d observed a fully online hearing.  Having been told about the hearing at 1.33pm,  I requested a link to join proceedings via email and  received the details within 10 minutes.  

When I joined the hearing via Microsoft Teams at 2pm I was not quite sure of what to expect.  Despite the online setting, it was clear that there was no lack of formality.  Mr Justice Hayden’s clerk emphasised that this was not a meeting and very much a court setting.  All participants were instructed to ensure that they were in a private space with no other persons present, or within range, so as to maintain confidentiality:  those without an active role to play were instructed to turn cameras and microphones off.  Everyone was reminded of the restrictions on recording and reporting.  The hearing commenced with all those present instructed to “rise” as Mr Justice Hayden – who was physically present in the High Court – joined the virtual courtroom.   

Mr Justice Hayden brought an immediate air of authority to the online proceedings, yet he also displayed warmth in how he approached this sensitive case from the outset.   Mr Justice Hayden’s immediate priority was to establish which family members were present, and to ensure that all the family members were visible on screen: he therefore requested everyone else (other than counsel in the case) to turn off their cameras. This meant that the faces and expressions of the family were clearly visible throughout.

The Hearing

The hearing was opened by Sophia Roper, counsel for the applicant Trust.  She provided a brief summary and introduction to the case.  She reported that AH has suffered from a range of “profoundly damaging” neurological conditions resulting from COVID-19 infection and has been in the intensive care unit since December 2020.  As later described by Mr Justice Hayden, these complications were the result of the virus having “attacked every part of AH’s body and every aspect of her bodily functions”.  

The most serious complications were four separate neurological conditions: necrotising myopathy, motor neuropathy, brain stem encephalopathy and cerebral encephalopathy.   The motor neuronopathy had affected at least 90% of AH’s nerve cells, resulting in loss of function from below the neck, including limited movement of the diaphragm.  In addition, the brain stem encephalopathy had also caused permanent and significant damage to the brain stem itself – an area of the brain which contains respiratory regulatory centres.  This means that AH is now permanently dependent upon a ventilator to breathe.  AH has also lost a degree of function in the face, neck, and eyes.  The damage caused to both cerebral cortices, resulting from the cerebral encephalopathy, has placed AH in a condition which is akin to, but markedly more complex than, that of ‘locked in syndrome’.  

Before admission to hospital, AH lived at home with her immediate family members. During the hearing, the importance of those relationships was emphasised to the court.  The court heard how AH’s family were “the centre of her world” and Hayden J commented that it was also evident that AH was at the centre of her family’s world, as evidenced by how quickly those family members had rallied to attend the High Court with less than an hour’s notice.

AH has a medical history which could have predisposed her to the severe effects of COVID-19, having suffered seasonal respiratory infections and acute bronchitis.   However, the effect that the virus took upon her body was rare.  AH initially contracted the virus in December 2020 and was admitted to a leading hospital. She subsequently self-discharged, but then rapidly deteriorated and was re-admitted and has been in a neurological ICU for the past seven months.   Whilst AH was described as “locked in”, Hayden J emphasised his aversion to terms such as ‘locked in syndrome’ which may fail to encompass the associated complexities of these conditions.  The High Court heard that AH could communicate to a degree and was able to respond to ‘yes and no’ questions with eye movements.  AH’s clinical case had been referred to a national COVID neurological team which reached three conclusions about her condition; 

• although each of her complications has been experienced by other COVID patients, no other patient has experienced the “unique combination” that she had; 
• there is no additional treatment available 
• there is no realistic expectation of “meaningful improvement”.

The hearing arose because the Trust no longer considered life-sustaining treatment to be in AH’s best interests.  It asserted that whilst there had been “limited improvement” in AH’s condition, such improvement coincided with greater awareness and subsequently increased suffering and distress.  The treatment required to keep AH alive was also described as “invasive and burdensome”.  Counsel for the Trust referred to one aspect of that treatment – suctioning – describing it as being painful and causing AH “significant and repeated distress”.   Hayden J later acknowledged that this assessment of distress was determined by the physicians’ subjective interpretation of AH’s facial expressions.    

Capacity

Although the issue of capacity was not addressed in any depth at this early hearing, the trust inferred that AH’s capacity was diminished.   In accepting that AH could communicate, there was concern that her “concentration was impaired” to such an extent that she would not recognise when being asked the same question twice. So, the Trust considered that a best interests decision would be necessary since AH would not be able to make treatment decisions for herself. 

Nageena Khalique QC, on behalf of AH (via the Official Solicitor), explained that the family had, in their possession, video evidence showing AH communicating that she did not want to die.   Concern was raised as to the Trust’s apparent focus upon AH’s ‘negative facial expressions’ rather than her positive responses to seeing family members – something which was consistently mentioned in her notes   Whilst medical records indicate that AH lacks the mental capacity to make “all but simple decisions”,  Nageena Khalique QC requested that the expert opinion of a neuropsychiatrist specialised in ‘locked in syndrome’  be sought in order to “interpret her facial expressions and responses to questions”.   It was noted that AH has an awareness that she is in hospital and clinicians acknowledge that she may be “emerging from a minimally conscious state”.    

Family statements

As this was a directions hearing, the court sought to establish what further information was required from the parties in order both to assess AH’s capacity and to decide on her best interests.   In turning to address the family, Justice Hayden explained that an assessment of a patient’s best interests involves consulting a “broad canvas of all the information which is available” and that includes obtaining a full picture of the person at the heart of such decisions.  On these grounds, he advised the family to prepare written testimonies for the subsequent hearing.  

With compassion, Hayden J reminded the family of the evidence that AH is “unlikely to recover any autonomy over any aspect of her life or do anything independently again.”  He said, “The damage she has sustained is enormous and awful to read about” such that she “will never be able to live outside of residential care” and “things that have been dear to her, she will never be able to enjoy in the way she would have contemplated”.  But he clearly stated that this “hypothetical factual matrix” (i.e. even if these facts are all true), “does not automatically indicate a clear best interests outcome”.   

Brief testimony was then provided from each of the close members of AH’s family in turn.   The family provided compelling testimony as to their love of AH who had consistently expressed to them, her wish to “carry on”.   

AH’s sister said that AH “might have been a bit of a worrier, but she was a very strong person who faced problems head on. She had a lot of resilience”, adding: “She’s my big sister. I’ll be there for her. Nobody wants to lose a sister”.

AH’s son said that “the best person to ask is my Mum, and we have video recordings of her clearly saying she doesn’t want to be end of life”.  He started to explain that treating clinician, also present in court, “has applied ridiculous amounts of pressure on the family”, but Mr Justice Hayden intervened:

“These are doctors from a centre of excellence, doing their very best. That idea is one I simply don’t accept. Everyone has a different idea of where your Mum’s best interests lie.  Dr A is here in court, in his scrubs, making part of his day available so that he can better understand how to do the best for your Mum.”

Another son, who works for the NHS, described how he moved out of the family home (where he’d lived for 34 years) to protect his Mum from infection.  “She’s a very strong person”, he said.  “She’d want to carry on in case there was some kind of miracle or a cure was discovered in the future.  I absolutely love my Mum.  If she was in pain, I’d say palliative care, but she’s not in pain and the more I see her, the more alert she is.”

The oldest daughter, who lives overseas, spoke movingly:

 “Mum caught the virus four days after I gave birth. Mum was really upset that because of covid she couldn’t be here with me to help me when I went into labour.  I was really looking forward to bringing my son to meet my Mum. She was very excited about it. When my Mum went into hospital, the last thing she said to me was ‘I want to see my grandson’.  None of us want her to go into palliative care. We are all holding out a bit of hope that she will recover. We want her to have a shot at recovery.”

The youngest daughter “lived with my Mum right up to the day she went into hospital”.  She visits daily during the week (and an aunt takes over at weekends).  “We all want our Mum to get better”, she said.  “We are listening to what the doctors are saying, but at the same time it’s a virus nobody knows about and she would not want them to give up on her”.  Mr Justice Hayden intervened again, pointing out that “nobody is giving up on your Mum”  and that:

“There’s lots we don’t know about covid, but when it comes to looking at evidence about the brain, we are in secure territory and we’ve all got to be intellectually honest.  At the end of the day, it is your Mum’s best interests that I have to keep unswervingly in focus.”

Having listened to the family evidence, Mr Justice Hayden said that he had “not come to even a preliminary conclusion on the evidence in this case”.  He noted that “the family has unified around the same position” and said that AH “would be proud of her children – they are testimony to the strong, independent, loving care that she has provided them with”.

Ongoing treatment or palliative care?

Hayden J, with great sensitivity to the plight of AH’s family, set out the choices which were available at the subsequent hearing: that AH be discharged from the Hospital to the care of a highly specialised residential unit – a risk which would not be without significant risk to her life and well-being – or that life-sustaining treatment be withdrawn and AH placed on a palliative care plan which would be followed by the end of her life in a way which was free from pain.  

Hayden J described the options before him as “awful and invidious”.  Of particular concern was that AH’s complex clinical condition – which Hayden J clarified was not to be “confused with long COVID or locked in syndrome’.  The complexity and severity of AH’s condition means that “70% of residential options” are simply not suitable, and therefore more information on specialist residential options is required.  In apologising to the family for speaking bluntly, Hayden J explained that AH “will never be anything like she was ever again [and therefore] is it important to ask whether a life that’s of value to her can be sustained”.

In nearing the end of the hearing Roper QC requested clarification as to the independent expert witness to be consulted.  Hayden J considered that the expert evidence provided by intensivists of the trust provide a “clear picture of AH’s presentation” and that while it was a “stretch” of provisions to say a further expert was required, he considered it necessary to address the family’s anxieties (which he considered to be “entirely unfounded”).  

In closing, Hayden J reminded the family that both his and their primary concern should be AH’s welfare.  He emphasised his hopes that the family would “engage in the process whereby everyone is considering what is best for AH”.  Hayden J also expressed his wish to meet AH, whether in person or virtually, before the next hearing (provisionally planned for the following week).  

Concluding remarks

Whilst familiar with many of Hayden J’s previous judgements, it was a privilege to be afforded the opportunity to attend as a member of the public on this occasion.  Throughout this hearing, Hayden J created a supportive and compassionate environment in addressing what was a sensitive and complex case.  He demonstrated an interest in getting to know AH and her family and spent time to ensure they understood proceedings.  He explained the nature of the hearing, the potential options available and the information he would need to determine which of those options was in AH’s best interests.  Throughout the hearing, he returned to the central concern which was the best interests of AH.  I came away from the court, assured that the case was considered by a judge who cared about all those concerned in the hearing. 

Jennifer O’Neill is a Lecturer at the University of Glasgow.  She tweets @j_o_neill_ 

Photo by Adrien Converse on Unsplash