By Celia Kitzinger, 15th December 2021
This was an urgent application concerning withdrawal of life-sustaining treatment from a 73-year-old woman (AA) who’d collapsed at the family home while preparing dinner on 2nd November 2021.
Her family had performed CPR until paramedics attended and took her to hospital, where she was admitted to the Intensive Care Unit (ICU).
Following a series of assessments and examinations, she was diagnosed with a significant hypoxic brain injury, which has caused irreversible brain damage.
She’s sedated, breathing spontaneously albeit with high levels of ventilatory support and receiving clinically assisted nutrition and hydration (CANH). There does not appear to be any dispute that she lacks capacity to make her own medical decisions.
The treating clinicians consider that there is no realistic prospect of recovery, and that it would be in AA’s best interests for life-sustaining treatments to be withdrawn and for her to be treated with palliative care only. (They had already, separately, decided that cardio-pulmonary resuscitation was not an “available option”.)
The family disagree and want all treatments continued (and also do not agree with the DNACPR decision). They had asked whether there was any alternative NHS or private hospital in the UK willing to treat her: at present none has been found.
The hospital trust made an urgent application to the Court of Protection for a declaration that continuing life-sustaining treatment was not in AA’s best interests.
The evening before the day of the hearing, the family stated (via one son’s solicitors) that arrangements were in place to transfer AA overseas for treatment via air ambulance (funded by the family). Neither the air ambulance nor the hospital to which it was proposed to transfer her had been in touch with the clinical team caring for her.
The hearing was before Mrs Justice Knowles on the afternoon of 14th December 2021.
The applicant trust was represented by Rhys Hadden of Serjeants’ Inn.
It had been proposed that Emma Sutton, also of Serjeants’ Inn, should be counsel for AA, via the Official Solicitor. This was eventually confirmed, despite opposition to this appointment from a family member in the hearing.
One of AA’s sons was formally represented by Varun Zaiwalla and it was initially stated that the family “spoke with one voice” such that, in effect, this barrister represented all family members.
Jurisdiction and habitual residence
The first issue the court had to address was whether in fact it had any jurisdiction over AA, who is a Pakistani national.
The family has argued that the court has no jurisdiction because AA is a Pakistani national and is domiciled in Pakistan.
The Trust position is that AA is habitually resident in England. Until her injury, she was living with her sons in England. She has an NHS number and has been registered with a GP since November 2018.
Both the Trust and the Official Solicitor drew the judge’s attention to paragraph 7, Schedule 3 of the Mental Capacity Act 2005.
Scope of jurisdiction
7(1) The court may exercise its functions under this Act (in so far as it cannot otherwise do so) in relation to—
(a) an adult habitually resident in England and Wales,
(b) an adult’s property in England and Wales,
(c) an adult present in England and Wales or who has property there, if the matter is urgent, or
(d) an adult present in England and Wales, if a protective measure which is temporary and limited in its effect to England and Wales is proposed in relation to him.
(2) An adult present in England and Wales is to be treated for the purposes of this paragraph as habitually resident there if—
(a) his habitual residence cannot be ascertained,
(b) he is a refugee, or
(c) he has been displaced as a result of disturbance in the country of his habitual residence.paragraph 7 Schedule 3, International Protection of Adults, Mental Capacity Act 2005.
The phrase “habitual residence” is not defined in the Mental Capacity Act 2005, but has been previously addressed by Mrs Justice Knowles in another case: The Health Service Executive of Ireland v IM & Anor  EWCOP 51.
In respect of AA, Knowles J ruled that she had “reason to believe” that AA was “habitually resident” in England and that – at least on an interim basis – she was persuaded that this was so.
She later asked for a third-party disclosure order of AA’s medical records from 2018 up to the date of her admission to ICU. It’s likely that AA was in regular communication with her GP since she has long-standing hypertension, type 2 diabetes and gastroesophageal reflux which was treated with medication. Ongoing contact with an English GP would, the judge said, “be relevant to” and “part and parcel of the factual matrix” pertaining to habitual residence.
“Even if “(said Knowles J) “I am wrong about that [that AA is habitually resident], 7(1)(c ) gives jurisdiction to the Court of Protection if the person is present in the country and the matter is urgent” (see Re QD (Jurisdiction: Habitual Residence)  EWCOP 56 at para 30 for consideration of the matter of ‘urgency’).
Matters concerning AA are “urgent” because there’s an immediate need for protection in the form of detailed case management orders, and for the Official Solicitor to be properly engaged to act for AA, and for an independent expert to be appointed to assess her. It’s also “urgent” because of the information available to the court regarding proposed transfer arrangements by air ambulance, without any liaison between treating clinicians and ambulance personnel or overseas hospitals.
“I am not satisfied at this moment in time that I can avoid exercise of my jurisdiction on an urgent basis. That is my decision”, said the judge.
The judge addressed one of AA’s sons who was visible on screen throughout the hearing – alongside three other adults (and – at times – a baby) who I took to be family members. This was not the son who was formally represented by Varun Zaiwalla.
This (unrepresented) son had earlier interrupted the hearing during the opening submission by Emma Sutton, counsel for the Official Solicitor, when she was expressing concern about the air ambulance that had apparently been ordered to collect AA without “even a skeleton plan for a vulnerable adult who’s in ICU to travel from [City] to [City] via [City]”.
His intervention was something along the lines of “the ambulance is coming on their information” but he was quickly cut off by the judge who said, “I do not tolerate interruptions in my courtroom. It is discourteous.” Before withdrawing he said: “I would like an opportunity to speak. I am not represented”.
Turning to him now, the judge asked whether he wanted to be represented as a separate party (rather than via Varun Zaiwalla with the rest of the family, as had been previously indicated).
“I want to help my mother as much as possible”, he said. “We disagree with the opinion of the Trust and the treatment plan they have set out”. He said the family had obtained other treatment plans, from India and Turkey. “She is slowly improving,” he said. “These patients take about a year to recover. Maybe it is constraint of resources, I don’t know….”
The judge clarified that what she was asking was “who should be a party to the proceedings. Is it the case that if I join your brother, there’s no need to join anyone else, because the family all agree?”
I wasn’t convinced that he really understood the question. He referred to people’s availability and people being away on holidays.
The judge said: “I’m going to join your brother via Varun Zaiwalla, and if there’s any difference of opinion between now and the next hearing, let the court know, and we’ll join you.”
That seemed satisfactory at the time but later unravelled when proposed dates for the next hearing were discussed (5th and 6th January 2022 before Mr Justice Poole).
The son said that his preferred counsel (naming one of the UK’s most highly regarded advocates) would not be available until the following week. “I was told by you that family speak with one voice”, said the judge – clearly surprised that the son was apparently seeking separate representation. “Yes, but we can have different representation and counsel,” he replied.
The judge fixed the hearing for those dates nonetheless “because I am not prepared to leave it uncertain”. She was, she said, “anxious to resolve this on behalf of AA sooner rather than later” and finding an available judge in the context of the “intense scrutiny over a truncated period of time” can be difficult.
“My Lady,” protested the son, “my mother is not in a condition where there’s any urgency. She’s not in pain. This is not an urgent case at all. They are making it out to be that, but it’s completely false”.
Second opinions and expert evidence
Counsel for the Trust said that they had tried to obtain a second opinion from another hospital and informed the family of this, but the family had subsequently contacted that hospital and asked them not to provide a second opinion as they did not consider them to be an independent body.
Counsel for the Official Solicitor was now proposing an independent expert unconnected with the Trust, Dr Chris Danbury.
“Is the instruction of Dr Danbury in dispute?” asked the judge.
“The instruction is opposed on the basis that it shouldn’t be necessary in light of the expert evidence and medical reports already obtained”, said Varun Zaiwalla.
Counsel for the Official Solicitor said that a second opinion was “clearly necessary… because of the seriousness of the decision about whether clinically assisted nutrition and hydration should continue”. She also referred to the national Guidance on Clinically Assisted Nutrition and Hydration for adults who lack capacity, pointing out that best medical practice requires a second opinion (paragraphs 35-39 and section 2.8). The cost would be borne by the Official Solicitor and it would not involve any delay as Dr Danbury was able to visit AA the following day and produce a report by 22nd December 2021. “It’s quite unusual,” she said, “to have an objection where there’s ‘necessity’, no delay, and no cost to the party”. Moreover, Dr Danbury is “a leading expert”.
The (unrepresented) son then also opposed the appointment of Dr Danbury – in part, he said, because “he’s an intensivist – he’s not even a neurologist. How can he give an opinion?” More fundamentally, “I don’t trust any doctors in this country. I have already obtained second opinions from India and Turkey I am satisfied with”.
The judge made a short ruling on the matter. “This court,” she said, “is going to be asked to make extremely serious and difficult decisions”, including “treatment withdrawal resulting in inevitable death”. Under those circumstances, “it is absolutely clear to me that all reasonable steps should be taken to get a second clinical opinion”. Dr Danbury is “a well-known intensive care specialist with the necessary expertise to assist the court with these questions”. Although the family say evidence has been obtained from other sources, these are “based abroad and have not had the benefit of seeing AA in the flesh”. She approved the instruction of Dr Danbury.
There was some subsequent discussion about the status of the opinions the son says he has already obtained. “If [son] has already obtained opinions, he is at liberty to present them to the court”, said Rhys Hadden (for the Trust), “although whether they will be accepted as evidence is another matter.” Responding to some indication from the family that they might engage an overseas doctor to assess AA, he pointed out that this would need to be the subject of an application to the court.
In another contested case concerning treatment withdrawal, which I observed and blogged about earlier this year, some family members instructed a doctor to conduct a remote assessment without the permission of the court, the hospital, or the patient’s wife (who took a different position to them on best interests): (Z v University Hospitals Plymouth NHS Trust & Ors (Rev 1)  EWCOP 69). This is clearly something the courts want to avoid families doing in future, since it breaches the court rules on the instruction of experts.
The Air Ambulance
Counsel for the Trust intervened to say he’d just received an email from the Trust who reported that a private air ambulance company, engaged by the family, had phoned them to say that they were planning to arrive on site today at 5pm.
It was shortly after 2pm at this point.
Judge: Mr Zaiwalla, what’s the position?
Counsel: I don’t have up-to-date instructions.
Judge: At the moment there is no clinical liaison at all with the air ambulance staff and the doctors who are treating her. That is, if I may say so, the bare minimum. This court is not going to be bounced into arrangements like this.
The judge called a 20-minute adjournment for counsel to the family to take instruction: it actually extended for nearly 30 minutes. The family liaised with their counsel by telephone, leaving the video-link running. Although we couldn’t hear what was being said, everything about their body language and gestures signalled – at different times – anger, disbelief, panic and frantic distress.
When the hearing resumed, Varun Zaiwalla said that there seemed to have been a “misunderstanding” on the basis of which the family had sent the air ambulance to the hospital. They had apparently believed that the Trust (or the Hospital staff) had agreed to the transfer. He apologised on his client’s behalf.
The judge was gracious in her response. She said she understood, that the situation is “very difficult”, that “everyone’s upset and I completely understand that. I don’t criticise them”.
Rhys Hadden (for the Trust) said that “to promote clarity” and “in an effort to assist” he suggested an addition to the order before the court, to the effect that “’AA is to reside in and receive care at the Hospital and must not be transferred or removed pending further order of the Court or agreement between the parties in writing, and that must include the Official Solicitor’. I don’t say that to be heavy-handed. I do think it will promote clarity.”
The matter was not so easily settled, however. Later, when asked to address the unrelated matter of the Official Solicitor’s role in the proceedings, the (unrepresented) son returned to this issue and said “the ambulance was not sent out of the blue. I have email after email after email asking when I was going to make arrangements to transfer the patient. The only question was who was going to pay, and I said I would.”
And still later, this air ambulance was raised again. At around 4.30pm (half an hour before the projected time for the air ambulance transfer to be effected), Varun Zaiwalla said that his client had “evidence that the Trust has agreed to transfer AA today by air ambulance…. As such the court should go ahead and authorise that transfer today”.
The judge asked for that evidence and after a few fragments of email correspondence were read out in court, she said she was not willing to engage with a few emails out of context but would need the full correspondence, which had not been submitted to the court. “No. Produce all of it NOW if you want to make that application.”
This led to another adjournment of around 25 minutes, following which Varun Zaiwalla returned only to say, “I have no more submissions to make with regard to the emails”, suggesting the judge might want to hear from the (unrepresented) son. The judge declined: “I don’t have any of the primary material in front of me. I don’t have the full run of emails before me, so I don’t think I’m going to be assisted by oral submissions on this topic.”
Appointment of the Official Solicitor
At some point in the hearing, in response to an unrelated question, the son had said that he opposed appointment of the Official Solicitor: “I don’t think the Official Solicitor should be allowed”.
Once the matter of the air ambulance had been cleared up (and before it returned again as an issue), the judge picked up on this and addressed Emma Sutton, the proposed litigation friend for AA via the Official Solicitor – who despite not having been formally appointed played a full role in this hearing: “Why do you say AA requires to be represented, and represented by the Official Solicitor?”
Emma Sutton explained the role of the Official Solicitor in the Court of Protection. When someone lacks capacity to conduct proceedings, as AA clearly does, she requires a litigation friend. In serious medical treatment cases, that is often the Official Solicitor. In a situation like this one, where there is a clear divide between the Trust and family members, and where the (unrepresented) son says he doesn’t trust any doctors, it’s not feasible to have a family member act as litigation friend. The Official Solicitor “doesn’t take sides” and will “provide an objective analysis”. Her appointment is “inevitable on the particular facts of this case.”
For the Trust, Rhys Hadden agreed that “the case does require an independent, impartial litigation friend, and at the moment no alternatives are put forward”.
For the family, Varun Zaiwalla said, “I don’t believe there’s anything I can fairly say against the submissions of Ms Sutton”.
The judge asked the unrepresented son for his views. He first spoke about the air ambulance saying, “We want our mother to have treatment overseas”. “Yes,” said the judge, “I understand that. I am asking you about the Official Solicitor.” “The Official Solicitor is not independent”, he said. “We would prefer a relative of ours should be in his place.” (I’m pretty sure he used “he”, which struck me as odd at the time.)
The judge gave a short ruling. It was “self-evident that AA requires to be represented within the proceedings”. The son’s view that the Official Solicitor is not independent is “mere assertion”. In fact, “the Official Solicitor is independent, does not take sides and no one else is advanced as a litigation friend who can act impartially”. Therefore, she said, “I decline to endorse [the son’s] assertion against the Official Solicitor acting for AA.”
Ceilings of treatment
The Trust was seeking an order that it was lawful and in AA’s best interest to impose a ‘ceiling of treatment’ in relation to cardiovascular support and renal replacement therapy – “on the basis that it would be clinically futile”. (My understanding is the clinicians should not give “clinically futile” treatment in any event, and that the court cannot require them to do so, so this wording seemed odd.)
A doctor responsible for AA’s care was available to give evidence on this matter, but in the event she was not called as a witness.
Varun Zaiwalla argued that it was “not appropriate for the court to set a ceiling on what treatments may be appropriate in future exigencies” and that it should be left to the clinicians to make decisions as the relevant circumstances arise.
The judge expressed concern that “in circumstances where it’s transpired that the Trust and the family are at loggerheads, what reassurance does the court have in the interim that if her condition deteriorates, it won’t end up in this court out-of-hours?”
For AA, Emma Sutton’s position that there was not enough (written) evidence before the court on these points, and “the court should ordinarily be asked to simply ‘hold the ring’ at an initial hearing pending a comprehensive analysis of a patient’s best interests and not make very serious decisions ‘summarily’ which have consequences to the continuation of life”.
After a brief adjournment for Counsel for the Trust to take instruction, Rhys Hadden said the Trust was “content to effectively withdraw that application”.
“Of course”, he said, “any decision on future treatment will be subject to the individual clinical judgment of clinicians involved as part of best interests consultations, which – if time permits – will involve consultation with the family and with the Official Solicitor”.
The hearing ended around 5.15pm.
I was left with a strong sense not only that the family and the Trust were (as the judge put it) “at loggerheads“, but also that the family was effectively ‘on a different page’ about how serious treatment decisions are made in a patient’s best interests, and how the Court of Protection works to ensure that.
Many families, of course, falsely believe that ‘next of kin’ can make decisions for incapacitated adults, and also that if they have money to pay for particular interventions or treatments for a loved one, there can be no reasonable objection to them doing so.
Discovering that this is not so within the medico-legal context in which decisions are now being made for AA is clearly a source of shock and dismay for this family – who seemed at times incredulous at the direction the court was taking.
This is likely to be a painful and difficult process for the parties, especially the family, as the case moves towards a next hearing on 5th and 6th January 2022.
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia