When I joined the hearing, I was unaware that the lady at the centre, Mrs W, had sadly died the previous evening.
Learning this, in the opening minutes of the hearing, added an emotive element and changed the hearing from a decision-making process about Mrs W’s future to a more unusual “lessons to be learned” situation.
It was, as counsel said “a profoundly sad time” for the family, who had also experienced the death of their father just twelve days earlier.
As the case opened, we learned that the Trust (the London North West University Healthcare NHS Trust) had commenced a full Serious Untoward Incident (SUI) investigation and would be referring Mrs W’s death to the coroner.
The Court heard from Mr Hallin (who represented Mrs W via the Official Solicitor) that “it is hard to accept there may not be other cases which have not come before the Court” and listening to the case I agreed.
The case was originally brought to court by the family of Mrs W when they were told that clinicians had withdrawn Mrs W’s nasogastric tube. The nasogastric tube ensured that Mrs W received nutrition and hydration, and had been in place since around 23rd November 2021. After it was withdrawn, her hydration was provided by an IV route, but she received no nutrition other than some sugars dissolved in her hydration.
Details of the case as disclosed in earlier hearing on 10th December 2021 can be found here and (in a report on this same hearing) in this blog post.
Why this case interested me
I promote proactive Advance Care Planning, conversations about What Matters Most and formalising planning through tools such as Lasting Power of Attorney.
I advise people that appointing an Attorney, via a Lasting Power of Attorney, is part of normal life planning. I do so in the belief that this provides a legal framework ensuring that decisions about whether or not to consent to treatments can be made by people we choose if our capacity to make independent decisions is lost.
The hearing demonstrated that, without professional understanding and good organisational practice, frameworks for planning ahead can fail.
There are two specific legal frameworks at the heart of this blog, each of which I’ll address in turn. They are (1) Lasting Power of Attorney; and (2) Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) decision-making.
1. Lasting Power of Attorney
A Lasting Power of Attorney is a legal document that enables a someone to nominate a person or persons to act for them if they ever lose capacity to make decisions for themselves.
There are two Lasting Power of Attorney forms, one for Health and Welfare and one for Property and Finance.
In a previous blog, I have focused on Property and Finance decision-making; here the issue is Health and Welfare. However, the basic principles that professionals need to understand are the same for both.
Mrs W had nominated one of her sons and one of her daughters as attorneys for a Health and Welfare Lasting Power of Attorney. She selected Option A in the Lasting Power of Attorney application. This meant that Mrs W gave her son and daughter authority to give or refuse consent to life sustaining treatment.
From the downloadable form to create and register your LPA for Health and Welfare on the government website
Provision of nutrition via a nasogastric tube is a life sustaining treatment and included as an example in the formal guidelines for making a Lasting Power of Attorney:
By not consulting with Mrs W’s attorneys the Trust failed to recognise their legal role.
The lack of communication has been highlighted as a failing for which the Trust has apologised.
The law is clear on withdrawal of clinically assisted nutrition or hydration (CANH) following the Supreme Court case of An NHS Trust v Y and another [2018] UKSC 46 and the subsequent publication of national Guidelines by the British Medical Association and the Royal College of Physicians, endorsed by the General Medical Counsel.
GMC guidance (since 2010) has been clear that doctors must seek a second medical opinion where a decision is made not to start, or to withdraw, CANH in a patient who is ‘not expected to die within hours or days’ (as in this case). The guidance is reiterated in Re Y and in the national guidelines.
Celia Kitzinger and Jenny Kitzinger comment on the “apparent disregard for the fact that the patient has a son and daughter who she designated as her health and welfare attorneys. She assigned them authority over consenting or refusing consent to life-sustaining decisions, and backed this up with a statement of preferences (or instruction) on the form appointing them.clinicians – If life-sustaining treatments were on offer, then the decision-makers were the son and daughter, NOT the clinicians – and it was up to them to make the decision as to whether it was in her best interests to continue with CANH or not.
The decision-making process is summarised in a useful flowchart in the guidance. The flowchart demonstrates explicitly the hierarchy of decision making in a person who lacks capacity. Taking precedence is an Advance Decision to Refuse Treatment (ADRT), followed by a Health and Welfare attorney with relevant power.
I find this flowchart invaluable in demonstrating the importance of Advance Care Planning, and a stark reminder that without an ADRT or Power of Attorney a family member does not have authority to consent to or refuse treatment for their loved one. One positive action that might result from this case and associated publicity is greater awareness of Lasting Power of Attorney and ADRT.
Witnessing the hearing, it appeared that the failing to consult with attorneys was not the action of a single person, but rather the outcome of a system failure.
This made me question the professional understanding of Lasting Power of Attorney within the Trust.
As a Registered Nurse, I have completed mandatory Mental Capacity Act (MCA) Training since the Mental Capacity Act was introduced in 2005. I have worked in a number of different NHS organisations and Trusts and draw on experiences from them all. Training invariably included awareness of Lasting Power of Attorney, but specific detail was absent. My learning and understanding of Lasting Power of Attorney has been gained through professional curiosity and my role as a Lasting Power of Attorney Consultant
With an awareness of the general lack of professional understanding about Lasting Power of Attorneys, I have previously blogged about how to check the validity of an Lasting Power of Attorney here and in further detail here .
The key points I summarised for clinicians checking a Lasting Power of Attorney:
Clarify which Lasting Power of Attorney has been made – Health and Welfare, Property and Finance or both.
Be aware that you need to know more than whether or not someone “is” an attorney; for Health and Welfare LPAs you need to understand the detail of the LPA, specifically if option A or B has been selected for life sustaining treatment, and any instructions the donor has given to the attorneys, or wishes and preferences they have expressed, on the form.
Ask to see the original Lasting Power of Attorney document (for LPAs registered pre- 17.7.2020). The picture below shows the stamp and perforated confirmation you would expect to see on a registered document.
If the LPA was registered on or after 12.7.2020 the attorneys and donor will have been issued with an activation key (a number) to create an on-line account. The online service enables people to:
view a summary of the LPA
keep track of people or organisations given access to the LPA
see how people named on the LPA are using the service
request or replace an activation key
The LPA reference number will be required in addition to the activation key. This is a significant improvement to the efficiency of checking LPAs. Full details of the service can be found on the Gov.UK use a Lasting Power of Attorney page.
Clarify how the attorneys can act if there is more than one attorney; this could be jointly (together) or severally (separately) – and might differ for different decisions.
An LPA for Health and Welfare can ONLY be used when the donor has lost capacity to make the specified decision. When making the LPA for Health & Welfare the donor will have made an important decision whether or not to give their attorney(s) authority to give or refuse consent for life sustaining treatment
An LPA for Property & Finance can be used EITHER as soon as it is registered or only when the donor loses mental capacity. The donor will have selected which option they wanted when making their LPA.
In this hearing,Peter Mant (Counsel for the Trust) questioned why events “took the turn they did” and asked “what can be learned and how can proper respect be given to Power of Attorney and to those that have this in their favour“.
I would echo this statement and be interested to find out how the Trust will be supporting clinicians in better understanding of Lasting Power of Attorney in future.
2. Do Not Attempt Cardiopulmonary Resuscitation
Moving to the second framework, Do Not Attempt Cardiopulmonary Resuscitation (DNACPR), there is a similar lack of evidence that the correct process was in place for Mrs W.
The attorneys had been told that Mrs W was not for cardio-pulmonary resuscitation, and they did not agree with this.
Cardiopulmonary resuscitation or CPR is an active intervention or treatment aimed at restarting the heart in someone who has experienced a sudden cardiac arrest. The important word is treatment; like any medical intervention, the benefit and burden must be balanced. CPR is not an appropriate action for someone who is approaching the end of life and, contrary to popular belief, is not an action that can be requested. CPR can however be refused by an individual with capacity or by an attorney who has been granted “Option A” decision-making via a Lasting Power of Attorney.
The NHS information Do not attempt cardiopulmonary resuscitation decisions updated in March 2021, makes this explicit with the statement: “It is important to understand that nobody has the right to demand CPR, so the decision may not change if there was a good clinical reason for it (for example, your heart, lungs or other organs are struggling to work). The doctor should explain their reasons and ask about your wishes and preferences“.
At the hearing for Mrs W on 10th December 2021, the applicant, represented by Katie Gollop QC , requested a review of the DNACPR decision:
“The son also wanted the DNACPR removed (again on an interim basis), disclosure of medical records, and an independent second opinion from an expert.”
DNACPR is an emotive subject. I have seen first-hand, and have personal experience of, DNACPR conversations handled poorly with little professional understanding. It is never appropriate to ask “do you want your mother resuscitated”: the decision to attempt CPR is a medical one. But it is always appropriate, and indeed part of the legal framework, to consult with a person about the DNACPR decision.
The ruling concerning Janet Tracey (R (Tracey) v Cambridge University Hospitals NHS Foundation Trust & Ors [2014] EWCA Civ 822) concluded that: “there had been an unlawful failure to involve Mrs Tracey in the decision to impose the first DNACPR notice, in breach of Article 8 ECHR for the following reasons:
Since a DNACPR decision is one which will potentially deprive the patient of life-saving treatment, there should be a presumption in favour of patient involvement. There need to be convincing reasons not to involve the patient.
It is inappropriate (and therefore not a requirement of Article 8) to involve the patient in the process if the clinician considers that to do so is likely to cause her to suffer physical or psychological harm. Merely causing distress, however, would not be sufficient to obviate the need to involve the patient.
Where the clinician’s decision is that attempting CPR is futile, there is an obligation to tell the patient that this is the decision. The patient may then be able to seek a second opinion (although if the patient’s multi-disciplinary team all agree that attempting CPR would be futile, the team is not obliged to arrange for a further opinion).”
The later Winspear judgment Elaine Winspear v City Hospitals Sunderland NHS Foundation Trust [2015]EWHC 3250 (QB) in 2015 made clear that the principle of consultation applied both in the presence and absence of capacity:
“As Blake J noted: “[t]here is nothing in the case of Tracey or the Strasbourg case law to suggest that the concept of human dignity applies any the less in the case of a patient without capacity” (paragraph 45). He therefore accepted the claimant’s case that the core principle of prior consultation before a DNACPR decision is put into place on the case file applies in cases both of capacity and absence of capacity.”
There would appear to have been be a similar lack of consultation or discussion regarding DNACPR for Mrs W and I hope this will be included as part of the SUI.
What next? Organisational accountability
Ensuring correct frameworks and best practice requires appropriate education. Equally important is a monitoring and assurance element.
The shocking feature for me in attending the hearing is what appeared to be a systematic failure in process.
I am left wondering how decisions such as DNACPR and CANH are monitored within the Trust, how decisions are audited and how best practice can be assured.
It is the details of this case that matter so much, and the apparent lack of reference to legal frameworks, alongside a lack of communication with a family.
I noted that the family was fighting for the interventions not as a cure or believing their mother’s condition was reversible, but so she could “move to home and end her days there”.
I find it profoundly sad that there is no evidence of proactive Advance Care Planning and eight years after the Janet Tracey ruling we are witnessing yet another family who have not been included in decision making.
My deepest sympathies are with Mrs W’s family. They are contending with grief for both parents, and with an investigation into the death of their mother.
I remain mindful that there is a very human story behind the facts of the case and respectful of the opportunity I had to be in Court to witness it.
My sincere wish is lessons are indeed learned by this Trust – and beyond.
By Jenny Kitzinger and Celia Kitzinger, 29th December 2021
This hearing (COP 13861502) on 13th December 2021 before Sir Andrew McFarlane, President of the Family Division, concerned the failure of London North West University Healthcare NHS Trust to comply with the requirements of the Mental Capacity Act 2005 in relation to the care of a brain-injured woman in her 70s, Mrs W[i]. It was the second hearing in this case, the first one having taken place on 9th December 2021.
The dispute at the centre of the case began when clinicians removed Mrs W’s nasogastric tube on 10th November 2021 without any consultation with her health and welfare attorneys (one of her sons and one of her daughters).
When the health and welfare attorneys were informed the following day, they said that they considered it would be in their mother’s best interests to receive nutrition, and repeatedly asked the Trust to reinstate it.
The Trust continued to withhold nutrition from Mrs W, although they did provide hydration (with dextrose and saline) via an IV line.
Then, on 8th December 2021, they also withdrew artificial hydration, and only restarted it after representations made by solicitors representing one of the health and welfare attorneys.
Although the Trust knew that the attorneys did not agree with the decision to withhold nutrition (and hydration) from Mrs W, they did not make an application to the Court of Protection.
Mrs W’s son was forced to obtain legal aid and instruct solicitors to issue an application and bring the matter before the court on an emergency basis. It was first heard on the urgent hearings list before Mrs Justice Arbuthnot on Thursday 9th December 2021 (blogged earlier).
At the beginning of this second hearing (on 13th December 2021) we learned that Mrs W had died the previous evening.
Counsel for the Trust (Peter Mant of 39 Essex Chambers) offered the family his “deepest condolences”.
The Trust assured the court and the family that they were taking this situation very seriously. They outlined the following steps:
They had put in place arrangements to undertake a full Serious Untoward Incident (SUI) investigation into the circumstances surrounding the withdrawal of Mrs W’s nasogastric tube on 10th November 2021.
They would refer Mrs W’s death to the coroner.
The Trust Board, including the Chief Executive and Medical Director had been informed about the case and were fully aware of the concerns that had been raised.
The outcome of the SUI (and any inquest if the coroner decides to hold one), including any recommendations arising out of the investigations, will be considered and acted upon at Board level.
The first hearing (9th December 2021)
We have given a detailed account of the hearing on 9th December 2021 before Mrs Justice Arbuthnot, in our earlier blog, which focuses particularly on the legal role of Mrs W’s son and daughter as her health and welfare attorneys.
We also noted that the Trust had offered (as it says in the Order from the hearing) “a sincere apology in open court to Mrs W and to her family”.
They apologised for two errors: first, that the views of the family members/attorneys “were not fully elicited prior to removal of the nasogastric tube”; and, second ,“that an application to the Court of Protection was not made”.
At that hearing it was agreed that the Trust would ensure that no further medical treatment – including hydration – was withdrawn from Mrs W while the Court was seized of the matter (i.e. retained jurisdiction over the case).
The judge also declared that Mrs W lacked capacity to conduct proceedings or to make decisions about her treatment, and appointed the Official Solicitor to represent her best interests (taking over at this point from her attorneys).
The Trust agreed to take over the role of applicant for the next hearing, with the Official Solicitor as first respondent, and Mrs W’s son as second respondent.
The court appointed an independent expert, consultant intensivist Dr Chris Danbury, to prepare a report on Mrs W’s nutrition, diagnosis, condition, prognosis and treatment options and to provide the report to all parties by 10am on 13thDecember 2021, the date of the next hearing.
The second hearing at 2.00pm on 13th December 2021
The hearing opened with a brief summary of events so far from Peter Mant (counsel for the Trust). He covered the events summarised above, and also the upshot of the report that had been received from Dr Chris Danbury, the independent expert.
This answered some of the questions we’d been left with after the hearing on 9th December about Mrs W’s condition and the nature of the clinical options available.
According to Peter Mant, Dr Chris Danbury had reported that Mrs W was not in a prolonged disorder of consciousness (a diagnostic term erroneously applied to her in the hearing the previous week). She was stable, when he saw her, and although she was in the end stages of her life, and prediction is difficult, he had given her a prognosis of weeks or maybe even months. He had recommended reinstating the nasogastric tube, and then inserting a PEG, with a view to developing a care package that would enable her to spend her remaining time in the comfort of her own home (presumably an option her LPAs supported and believed that Mrs W herself would have wanted).
Sadly, she had then died the following evening in hospital.
The judge said that this was a profoundly sad time for the family, who had also lost their father less than two weeks earlier.
The judge pointed out that the jurisdiction of the court comes to an end with the death of the patient, but that the hearing was proceeding, despite Mrs W’s death, “because of the need for some investigation into what happened”.
The family, said Katie Gollop QC on behalf of Mrs W’s son, take some comfort from the fact that this hearing is happening and that “other people, at a very high level are taking an interest”. Mrs W’s daughter, she said, had told her she “will never get over how her mother died”.
Peter Mant acknowledged the concerns and ran through the steps the Trust was taking in response (as outlined above, i.e. the Serious Untoward Incident investigation etc). Obviously, he said, “apologies and expressions of regret can provide only limited comfort to the family. We will make inquiries and will act on the findings of the investigation and make any changes necessary”.
The judge commented that statements from the patient’s son and daughter would be “a positive help to the investigation” because they approached what had happened “in a measured way, with insight and intelligence about the issues involved”.
Not just a one off?
It was clear that the family wanted the investigation to go beyond what happened to Mrs W to consider wider practices. Katie Gollop QC said the family “feel other people are in danger” and this possibility was certainly recognised as worthy of investigation by the judge and by the Official Solicitor.
“There’s a concern”, said the judge, “on reading the papers, that the family are right that this may not be a ‘one-off’. The procedure [followed by the consultant in Mrs W’s case] may be seen as entirely in accordance with their ordinary practice. Having read the statement of the consultant, there wasn’t any indication that what was undertaken was in any way out of the ordinary.”
Conrad Hallin (representing Mrs W via the Official Solicitor) said: “The Trust will investigate this incident, but it’s hard to accept that if this approach was taken to this case, there may not be other cases to which a similar approach was taken”.
The judge said, “there is a legitimate concern that this has happened, or could happen, to other patients. I anticipate that the NHS Trust will be very alive to that”.
In particular, the Trust seemed completely to have ignored the role of the health and welfare attorneys, who were Mrs W’s ‘decision-makers’ by law.
Katie Gollop QC: There’s little point people making Lasting Powers of Attorney if they have no traction at all. There was no mention of the Lasting Powers of Attorney at all in the doctor’s statement.
Judge: I am being measured in what I say, but I had been struck by that.
The judge later reflected on the need to investigate “how a lasting power of attorney is acknowledged by the hospital and proper respect given to the decision-making role of those who have a power of attorney in their favour”.
As so often in these cases, there was mention of “lessons to be learned”.
We hope that these “lessons” and the outcome of the inquiry more broadly will be made publicly available.
“Requires Improvement”
According to the Care Quality Commission (CQC), London North West University Healthcare NHS Trust is one of the largest integrated care trusts in the country, bringing together hospitals and community services across Brent, Ealing and Harrow. It operates hospital services from three main hospital sites, as well as providing a range of community services in the three Boroughs. The trust employs more than 9,000 clinical and support staff and serves a diverse population of approximately one million people.
This Trusthas been rated by the CQCas “Requires Improvement” at each of the last two inspections, most recently in 2019. Comments included:
Training compliance rates for deprivation of liberty safeguards was poor among medical staff. Some staff had a variable understanding of the Mental Capacity Act (MCA) and deprivation of liberty safeguards (DoLS).
We found that some trust policies were out of date.
In reviewing trust documentation on risk, serious incident investigation, review of deaths, duty of candour, complaints etc. and action plans arising, we noted a general good standard of documentation but a continuing lack of certification of completion of improvement or sign off from actions identified in many cases.
This is concerning, since it seems likely that lack of understanding of the Mental Capacity Act, and possibly also out-of-date policies, may have contributed to the problems in Mrs W’s treatment. And if previous incidents and complaints have not led to “completion of improvement or sign off from actions identified”, this does not augur well for “lessons to be learnt” from this case.
The public has a right to know what went wrong in this case, and how the Trust proposes to avoid anything like this happening again.
We will be seeking information from the Trust about the outcome of investigations and the improvements they are putting in place in the New Year.
[i]At the family’s request, reporting restrictions on naming the people involved in this hearing were lifted. We are, therefore, permitted to name Mrs W and her family members. However, the family has not yet made any public statement about how Mrs W died or the concerns they had. We have therefore chosen not to identify Mrs W or her family here, in order to give the family the opportunity (after the funeral) to put this information into the public domain themselves if they wish to, in their own way. We will update this blog, with names and links to whatever the family say, at some point in the future or link to media or other public reports of the case if the family is named there.
I am a retired Intensive Care consultant, working part time for the Welsh Medical Examiner Service, and in my former life was involved in a few applications to the Courts for declarations in relation to patients under our care, though these pre-dated the (new) Court of Protection.
I observed this Court of Protection hearing because in my former life I was involved in teaching doctors about the Mental Capacity Act 2005 and related areas and am keen to see all doctors reaching the high standards set by clinicians who have taken the time to understand their legal and ethical responsibilities.
The case (COP 12770223) before DJ Mullins via MS Teams on 23rd December 2021, concerned a man in his 30s with severe cerebral palsy and learning disability (MK) who has yet to receive even a first COVID vaccine because his mother objects.
He is not able to express himself verbally and his lack of capacity in relation to healthcare does not appear to be disputed.
He also requires dialysis for kidney failure, for which he attends hospital three times a week.
The Clinical Commissioning Group responsible for MK’s care (represented by Clare Hennessy of Serjeants’ Inn Chambers) had made an application for MK to receive both the first and second doses of COVID-19 vaccine, and subsequent booster doses, as applicable.
The man at the centre of the case, MK, was represented (via the Official Solicitor) by Winsome Levy of Field Court Chambers.
MK’s mother is a litigant in person but was not present at today’s hearing due to illness.
The local authority (represented by Shadia Ousta Doerfel) is also a respondent and does not contest the application nor the declarations and orders sought by the applicant.
In this hearing, as in others I’ve been involved in, the attention to detail and the patient-centred nature of proceedings was impressive.
Delay
Previous Open Justice Court of Protection Project blogs (e.g. “Covid vaccination and a Christmas visit“) have observed that the Court of Protection is deeply concerned about the length of time which often passes between an issue being identified and an application being made to the Court.
District Judge Mullins took time to remind the Court of the problem of delayed applications, identifying, in this case, earlier missed opportunities.
Looking through the chronology of the case, the judge said. “It’s not my role to point the finger at any individual or organisation, but it doesn’t make comfortable reading. Vaccination was first considered in February or March 2021 and here we are in December and there hasn’t been any resolution – and no vaccination. And now he has COVID. Though he seems to be doing relatively well?[1]”
After being reassured that MK is doing well despite testing positive for COVID (and having a cough), the judge was at pains to point out that “at First Avenue House – and I’ve checked with the senior judge – if an application comes in concerning a dispute about vaccination, one of our technical experts will deal with it, and it will be referred to a judge quickly. The arrangements in the regional hub courts are similar – the court staff are alert to the need to progress vaccination applications quickly”.
The key point the judge reiterated was “if there’s any doubt – make an application. I would like the relevant people to know we are ready to receive applications and ready to deal with them quickly. The threshold for making applications is low. In cases such as this, where MK’s mother was objecting, and does object, there doesn’t seem to be any doubt that there should have been an application sooner. It doesn’t really matter who brings the thing to court: the important thing is to get the application made, and get the Official Solicitor involved, so we can address the specific case”.
The judge’s concern about delay was reflected by counsel for the CCG who explained that “nobody was quite sure of the pathway to escalate it, but I believe that’s been remedied now, so the local authority and clinical commissioning group will know how to escalate in future”. Counsel for the local authority said they were hosting an event in January at which they would “disseminate the court’s view and reiterate it to all participant local authorities who are attending as well”.
The Medicines and Healthcare Products Regulatory Agency gave approval to the Pfizer-BioNTech vaccine on 2nd November 2020; it has been available in quantity for most of 2021. The Bloomberg tracker reports that more than 8.82 billion vaccinations had been administered worldwide by 22nd December 2021.
I am struck by the contrast between what happens when patients in hospital are prescribed drugs which are not stocked or difficult to obtain. Often, considerable effort is expended in securing and administering supplies, and they can be administered within a day or two. Treating teams need to understand that if a best interests issue like this arises, the Court of Protection expects a sense of urgency and early application for their assistance.
Re-listing the hearing
Today’s hearing was hampered by the fact that both the patient and his mother are currently suffering from – apparently mild – COVID. Hence his mother was unable to take part in proceedings and MK’s vaccination, if it is to proceed, cannot now happen before 13th January 2022.
This would also allow time for an agent of the Official Solicitor to meet with MK – something which has not yet been possible due to his having contracted COVID-19.
The remainder of the hearing was mostly concerned with scheduling another hearing which allows MK’s mother to attend when she has recovered but does not delay the timetable for vaccination.
The Court is deeply mindful of the desirability of allowing the clinicians involved in this case to be available for their patients rather than attending hearings, and put a schedule in place to allow for written responses to questions which, it is hoped, may be sufficient to avoid the GP and the renal consultant needing to attend court.
I do hope I am able to attend the next hearing, provisionally listed for 10am on 10th January 2022, when hopefully the substantive question of whether vaccination is in MK’s best interests will be addressed.
Angus Mackenzie is retired from an NHS Consultant job in Anaesthetics and Intensive Care. He now works part time for the Welsh Medical Examiner Service. He tweets@anxiousmac
[1]Quotations provided by Celia Kitzinger who also observed this hearing. Note that they are as accurate as possible but since we are not allowed to audio-record court hearings, they are unlikely to be verbatim.
The hearing I attended on 21st December 2021 before Ms Justice Russell was yet another case which underlines the dangers of not planning ahead for possible future loss of capacity.
This is what can happen to any of us, at any time, if we are suddenly brain injured, whether from a car crash, assault, cardiac arrest, or any of the other unexpected events which can result in serious insults to the brain.
I attended this hearing because I was alerted to its broad focus. Once I was observing it, I realised I have some prior knowledge of this case from an earlier point in the patient’s trajectory. In this blog, however I draw solely on information gleaned from the hearing.
Background to the case
At the centre of this case (COP 13862920) is a man in his 40s (“MJ”) who, suffered a sudden subarachnoid haemorrhage (a type of stroke) in December 2020.
Like the vast majority of the people, MJ has no Advance Decision (ss. 24-26 Mental Capacity Act [MCA] 2005) or advance statement (s. 4(6)(a) MCA), and has not appointed anyone with lasting power of attorney (ss. 9-14 MCA) for health and welfare.
This is not a blog full of seasonal cheer – but it might suggest a novel Christmas present.
After reading this blog, I hope readers will be reminded of why advance planning for a possible future when you might lack capacity to make your own treatment decisions can be a priceless gift to your family (and your clinical team). Relevant documentation is invaluable to those who might one day have to confront decisions about your care. (See the charity, Compassion in Dying, for how to make use of these advance planning instruments).
During the year since MJ’s original injury, his clinical team have been faced with a series of difficult decision about the benefits and burdens of medical interventions for him as an individual.
His family and fiancé have had to make painful assessments of what MJ’s own likely wishes would have been.
At times, they have been in agreement that MJ would not have wanted any ongoing life-sustaining treatment, but that is not the case now.
They have been catapulted into a hugely difficult conflict, with different views of the right way forward.
His current condition seems to be at the higher end of the Minimally Consciousness State (“MCS +”) – although it is possible he has emerged into consciousness. I wasn’t entirely clear on this point from the directions hearing but no doubt the expert evidence about his diagnosis and prognosis will be presented in future hearings. Either way he has been left with severe neurological deficits.
After a prolonged period of hospitalisation and specialist rehabilitation and assessment he now lives in a care home, dependent on 24/7 support and lacking capacity to make decisions about his own medical treatment.
He is sustained by clinically assisted nutrition and hydration (CANH).
Some of his family believe that CANH and other life-sustaining treatment should now cease, on the ground that MJ himself would not want it. His fiancé disagrees.
Given the lack of an Advance Decision, all medical treatment (including CANH) need to be decided on the basis of his best interests.
Given the lack of agreement on what should happen, the decision has been referred to the Court of Protection.
The hearing
The directions hearing lasted just 20 minutes.
The applicant CCG was represented by Vikram Sachdeva of 39 Essex Chambers.
The protected party at the centre of the case, MJ was represented by Sophia Roper of Serjeant’s Inn (via the Official Solicitor).
The NHS Trust that had provided rehabilitation and assessment for MJ prior to his being discharged into a care home was represented by Ania Rao.
During the hearing it was agreed that MJ’s fiancé and MJ’s nephew should be (separately) joined as parties. Neither was present at this hearing and both will be acting as Litigants in Person.
Plans were also made to disclose information and inform relevant people and deadlines were agreed for lodging relevant (updated) medical evidence and witness statements.
It was also agreed that, following receipt of such information, the applicant would organise a roundtable discussion between those involved to identify whether there was any scope for agreement or narrowing the issues.
A date for the next hearing was set and it was also agreed that updated position statements would be filed several days before that hearing.
Costs were reserved, ‘apart from the usual costs order’.
An unexpected change of circumstances
The routine business of a directions hearing was somewhat disrupted by the news that MJ had been admitted to hospital with pneumonia the previous day.
He’s now receiving IV antibiotics.
I was left wondering how decisions about transferring MJ from his care home to hospital and the administration of IV antibiotics had been made given the views of some of MJ’s family about what MJ would feel about life-prolonging interventions. I wonder whether those charged with MJ’s care at present had carefully assessed MJ’s best interests taking into account those well-documented views and decided hospital admission was in his best interests nevertheless. I also wonder whether – as I have seen happen in some cases – he might have been transferred to hospital without (or even contrary to) careful best interests assessment and agreed ceilings of treatment. This is, of course, pure speculation: there was no evidence either way discussed at the hearing.
In any event, he was, as Sophia Roper (counsel for MJ), pointed out, ‘in a more perilous condition that we thought he might be”.
This medical emergency may account for the absence from the hearing of MJ’s fiancé and his nephew. In any case, it is a stark reminder of how family members in CoP cases are often dealing not only with the demands of legal proceedings but also the crisis of caring for a loved one – whether at home, in residential care accommodation, or in hospital.
MJ’s admission to hospital had prompted MJ’s fiancé to suggest delaying the hearing into the question of CANH – something the court refused on the grounds that, as the judge made clear: “It is not in MJ’s best interests to let the matter lie without progressing it at all”. The judge also noted that she was mindful of the difficulty of scheduling these sort of cases and the possible disruption the current Covid surge might add.
Counsel for MJ highlighted the strain on MJ’s fiancé and his family and requested that a recital should be recorded “to provide reassurance” to them. This recital included stating that MJ will be administered IV antibiotics pending further clinical review on whether these should continue or if he should be for palliative care, and that the timetable in relation to the court process “can be extended if in MJ’s best interests to do so.” (This last statement highlights the CoP’s clear focus on the individual at the centre of the case, only taking into account the feelings of P’s family insofar as the individual himself or herself might have done so.)
The recital was agreed with the clarification (suggested by Vikram Sachdeva, counsel for the CCG) that it should specify that if the timetable were to be extended, that would be “by the court’ (making clear where authority for any change of timetable lay).
It was good to see the acknowledgement of the strain on MJ’s fiancé and family, and the importance of including them in proceedings, alongside maintaining the court’s focus on MJ’s best interests and on proceeding in a timely manner. This is something that sometimes seems harder to deliver in day-to-day clinical settings. Outside the courts, I have sometimes seen concern for family members (the vocal, emotional presence in the room) apparently trump concern for a patient’s best interests. I have also sometimes seen discussion of best interests in relation to CANH in particular be put on hold – sometimes repeatedly – when patients go through life-threatening infections, and family or clinicians think (indeed sometimes even hope) that a proactive discussion of CANH might become redundant as ‘nature’ might takes its course.
In this court hearing I was left with the impression of a well prepared, careful and efficient hearing, underwritten by a wealth of existing clinical and best interest documentation – all setting the groundwork for the next hearing.
I am also left with a huge sadness – both for what has happened to MJ, and for the dire consequences for his fiancé and family, who are now not only dealing with the grief and trauma of his injury but are also left in this terrible position as they try to do what they believe to be right by him.
The further directions hearing is planned for early 2022, and I will hope to observe it and write an update blog then.
Meanwhile, the usual plea to anyone reading this – please consider appointing someone you trust to make decisions for you if you were unable to do so in future (the forms to do so are on the government webpage and don’t require a solicitor). Alternatively, or in addition, you can make an advance statement or a formal Advance Decision [Further information from Compassion in Dying]
I’ve had this documentation in place myself for many years – even though I am relatively young and healthy. I know how important such documentation is because my own family has had to confront the traumatic things that can happen when it is not in place, as we’ve described here: “M, Polly and the right to die” and “Doctors wouldn’t let my sister die”.
I would urge anyone who’s been considering sorting out paperwork for themselves to do this as soon as possible. If it doesn’t feel right to do it over Christmas, there is always the opportunity to make it a New Year’s resolution!
By Jordan Briggs, 21 December 2021 (with addendum by Celia Kitzinger)
This hearing (COP 13793235), conducted over Cloud Video Platform (CVP) before Deputy Circuit Justice Rogers at Lincoln Family Court on Friday 17th December 2021, focussed primarily on whether it was in the best interests of a young woman (PH) with a severe learning disability who lives in a care home to be vaccinated against COVID 19.
There were two additional matters:
whether it was in PH’s best interests to visit her mother for two weeks over the Christmas period, and;
where PH should live next, given that her current care home has served notice to the local authority that PH must leave the care home. (This was reserved for a later hearing.)
On the matter of vaccination – which occupied most of the hearing – the applicant Clinical Commission Group (CCG) (represented by Luke Berry) took the position that Covid vaccination was in PH’s best interests. So too did the Official Solicitor (Dr. Oliver Lewis), who represented PH’s best interests, and PH’s father (the parents are no longer married to each other), who appeared as a litigant-in-person.
Only PH’s mother (represented by James Pantling-Skeet) opposed Covid vaccination for PH.
She was concerned about the possibility of severe side effects, especially because of concerns about how vaccination would interact with her daughter’s epilepsy medications). She also believes that PH may have “natural immunity” and that she is in any case a healthy young adult who is unlikely to suffer from a severe form of the disease.
Factual background
PH, who is twenty-five years old, has a “severe” learning disability, epilepsy and a congenital chromosomal abnormality.
All parties agree PH lacks capacity to conduct this litigation (which is why the Official Solicitor is appointed on her behalf). All parties also agree that that PH lacks capacity to make a decision about receiving the Covid-19 vaccination. Final declarations had already been made relating to both litigation capacity and subject matter capacity in directions orders, and were not rehearsed again at the current hearing.
Until 2014, when she was 17, she lived at home with her mother. Since 2014 she has been living in a residential home, but maintains contact with both parents. PH’s mother lives nearby with her 21-year-old son (PH’s brother), and visits PH from time to time. PH’s father lives overseas, but maintains contact with PH via video-link.
PH is unvaccinated against almost all forms of disease. Indeed, the only inoculation which PH has ever received (an influenza vaccination administered in 2020) was given in error, after her mother’s directions not to administer the vaccination were not followed. Accordingly, PH is not vaccinated against coronavirus.
In outline, the history of proceedings is as follows. In May 2021, PH became eligible to receive the coronavirus vaccination. In June 2021, the CCG made an application to the Court of Protection that receiving it was in PH’s best interests. Considerable delay ensued. A hearing listed for 13 October 2021 was adjourned (at the mother’s request) and a subsequent hearing date was fixed (for 17 December 2021). That hearing was made all the more urgent when, on 5 November 2021, PH’s residential home served notice to the local authority with respect to PH’s placement. Her unvaccinated status was a “catalyst” for the care home to take this action. They stated that they could no longer continue to safely provide care to an unvaccinated resident. However, their service is pivoting to provide services to people with greater need for care than PH in any event, so whatever the outcome of this hearing in terms of PH’s vaccination status, a new placement would need to be found.
Against the background that PH’s ongoing care and residence was jeopardised by her unvaccinated status, and with her mother seeking Christmas contact with PH despite rapid spreading of the omicron variant of coronavirus, the Court of Protection sat to determine what was in PH’s best interests.
Further to the mental capacity assessment carried out by professionals involved in her care, there is no suggestion that PH understands what the vaccine (or indeed any vaccine) is or what it is used for. She has not made any statements in relation to the vaccine and how she feels about it and it is the view of the professionals that she does not understand what or how vaccination works. She has however been generally amenable to medical interventions and one of her carers has expressed the view that PH is “the only person who gets excited about hospitals and doctors”.
Unlike people in some other vaccination hearings, no restraint or coercion will be needed to vaccinate PH, and no order authorising force was required, since it was anticipated that she would accept vaccination.
The hearing
Access
Accessing the hearing was difficult. On the morning of the hearing, I emailed Birmingham County’s Court of Protection for a CVP link, but immediately received an automated response stating the Court would reply, but only within some 10 working days. I was advised (by Celia Kitzinger) that this is apparently routine, and does not necessarily mean that there won’t be a timely email with the link, but to phone the court for assistance if I hadn’t received the link by 20 minutes before the listed time for the hearing to begin. In the event (not having received it and being told that HMCTS emails were down that day), Celia Kitzinger provided me with a different email address to obtain access. Without her help I doubt very much that I would have been able to access the hearing.
Further problems arose when I tried to join the hearing. I didn’t know that, on the CVP platform, observers must grant permission for their webcams and microphones to be used by CVP if they are to view others’ webcams and hear others’ voices. Consequently, I denied webcam and microphone permissions, and could see and hear nothing when I first joined the hearing. Again, I liaised with Celia Kitzinger, who helpfully directed me towards the Court of Protection Transparency Project’s CVP User guide. I consulted that guide and, after re-joining the hearing with webcam and microphone permissions granted, I was at last able to watch the proceedings.
When I joined, counsel were speaking with the judge to organise a schedule for the hearing. It was agreed that PH’s mother would give evidence first, followed by PH’s GP. Proceedings then promptly got underway.
Witness evidence
PH’s mother
PH’s mother expressed the strong view that it was not in PH’s best interests to receive the coronavirus vaccination. Although she asserted in her position statement that she was “not an anti-vaxxer” and that she was “flexible” on the question of whether PH should be vaccinated, her oral evidence disclosed a vaccination-averse view resting on several assertions:
(1) She considered that clinicians had not undertaken an individualised risk-assessment to calculate the precise risks that vaccination would pose for PH.
(2) She expressed concerns that vaccination could increase the heaviness of PH’s menstruation and intimated that vaccination should be withheld as a result.
(3) She considered that neither the general public nor the court had access to complete information about the risks attendant upon coronavirus vaccination. Accordingly, she considered it inadvisable to administer the vaccination to PH because invisible risks could materialise and imperil PH. She expressed particular concern that, in her view, the ingredients of the Pfizer vaccination had been inadequately considered before the vaccination was widely distributed.
(4) She considered that PH didn’t need the vaccination in any event since PH is young and healthy and has a strong immune system, as putatively displayed by the fact that PH had never tested positive for coronavirus despite outbreaks in her residential home. Accordingly, PH’s mother felt that vaccination was unnecessary.
Of course, the views of family members do not determine decisions about what treatment a person will receive. As Rogers J would later put it, the focus here was on PH’s best interests, and her mother’s views are “neither determinative nor a veto” of what the court considers would be best for PH.
The mother also addressed the matter of PH coming home for a Christmas visit. This was clearly something she wanted very badly. She described how she and her daughter “love each other dearly” and “have joy and pleasure in the time we spend together”. Her daughter she said, “loves Christmas decorations and a tree” – and visible on screen, in her home behind her, was a decorated tree with multi-coloured lights.
Cross-examination of PH’s mother was principally conducted by counsel for the Official Solicitor. It focused mainly on whether PH should visit her mother’s home over Christmas, and what precautions would be taken to prevent PH contracting the virus, e.g. not going anywhere crowded, not using public transport.
One relevant issue to the Christmas contact question was the vaccination status of the mother herself and her 21-year-old son, who also lives at home. For, if PH’s mother and her son were not vaccinated, the likelihood of their contracting and transmitting coronavirus to PH would be higher than it would be if they were fully or partially vaccinated. Accordingly, if PH’s mother and her son were unvaccinated, it may well not be in PH’s best interests to spend time with them whilst PH was unprotected herself.
PH’s mother staunchly refused to disclose whether she or her son had been vaccinated, stating repeatedly that vaccination status was “confidential health information”. Despite direct questioning from counsel for the Official Solicitor and, eventually, from Rogers J himself, PH’s mother remained silent. Foreshadowing later submissions, counsel for the Official Solicitor advised that he would invite the court to draw adverse inferences from PH’s mother’s silence. Other counsel had nothing to add. With that, PH’s mother’s evidence concluded.
PH’s GP
Examination in chief of the GP began with the question: “What’s your professional opinion as to whether PH should be vaccinated”.
The GP’s reply indicated a clear view that it was in PH’s best interests to be vaccinated against coronavirus to reduce her chances of death, hospitalisation and serious illness, and long covid. He was particularly concerned about the new omicron variant because it is so much more contagious – a relevant issue given that PH is “a gregarious person” and not able to understand social distancing.
Cross-examination from Mr Pantling-Skeet covered a wide range of issues of concern to PH’s mother, including the risks of thrombocytopenia and risks associated with the Pfizer vaccine, in particular, for people taking medications for epilepsy, especially sodium valproate. The GP replied within the limits of the information available to him on the basis of PH’s medical records and the guidance he’d been provided with by NHS England and the Joint Committee on Vaccination and Immunisation (JCVI).
Cross examination by Oliver Lewis (for the Official Solicitor) covered the question of why PH hadn’t previously received vaccinations (“because that was against the wishes of [PH’s mother]”; how she would cope with hospitalisation (“it would obviously be incredibly traumatic… very distressing for her”) and some questions relating to the proposed Christmas visit – focussing in particular on the additional risk for PH if her mother and brother are, in fact, unvaccinated.
Closing submissions
The CCG’s position on vaccination remained that it was in PH’s best interests to receive both doses of the vaccine and a booster dose. “This court,” said counsel “is not a court of medical opinion”, citing Hayden J’s judgment in SD v Royal Borough of Kensington and Chelsea {2021] EWCOP 14 – in particular:
it is not the function of the Court of Protection to arbitrate medical controversy or to provide a forum for ventilating speculative theories. My task is to evaluate V’s situation in light of the authorised, peer-reviewed research and public health guidelines, and to set those in the context of the wider picture of V’s best interests.(§31)
Although there is no presumption in favour of vaccination in case such as these, Hayden J in SD remarked that“there is a strong draw towards vaccination as likely to be in the best interests of a protected party” (§ 33) Indeed counsel remarked that since Hayden J made those comments in February 2021, the situation has only developed: there are now new variants – omicron as well as delta and the original virus.
Taken in the round, counsel submitted that a clear body of medical evidence supports vaccination, and warns of a real risk of PH becoming seriously unwell if she’s not vaccinated and contracts Covid-19.
This was supported by PH’s father.
For PH’s mother, James Pantling-Skeet argued that there is no presumption in favour of receiving the vaccination and that the burden of proof is on the person saying that someone should receive it. This requires a decision specific to the person at the centre of the case, not a generalised approach. PH’s mother was her primary carer for 17 years and has an understanding of her from the mother-daughter relationship, as opposed to the viewpoint of professionals. She was there when new drugs for epilepsy were trialled on her daughter and witnessed what impact they had on her at the time. She’s understandably very concerned that this vaccination may put her at risk of similar issues arising again. “The crux of it from [the mother’s] perspective is that she still does not feel there’s been an appropriate individualised risk-assessment for PH”, and consequently she wishes to “continue with the prevention measures that have served her well until now, combined with her natural immunity”.
For PH via the Official Solicitor, Oliver Lewis said that there is no medical evidence to suggest any clinical reason why PH should not be vaccinated – that “clinically and legally it’s quite straightforward”. Dr Lewis said that the question of individualised risk assessment was a “red herring”: that there is a pre-vaccination checklist and that “there has been a risk assessment, Your Honour, and it’s been done in front of you in this court”. Finally, although the court has a duty to take PH’s mother’s views into account, Dr. Lewis submitted that “it’s obvious that she doesn’t get to veto medical decisions”.
Judgmenton vaccination
When the court reconvened at 2.15pm, Rogers J gave judgment on whether it was in PH’s best interests to receive the coronavirus vaccination. After setting out the facts, Rogers J commented that it was “unacceptable” that this hearing had incurred such delay – that, as PH had become eligible for vaccination in May 2021, to say that this case was “overdue for a decision” was “putting it at its lowest”.
Before continuing Rogers J praised James Pantling-Skeet, a solicitor who had said at the outset that he’d never advocated in the Court of Protection before: he was doing so today because of the illness of the barrister in the case who had (ironically) contracted Covid. Rogers J commenting that Pantling-Skeet had “demonstrated conspicuous skill in his conduct of the case”, especially in light of how little time he had to prepare his advocacy. Indeed, Rogers J remarked that he would “never have guessed that [Pantling-Skeet had never advocated in the Court of Protection before], because his obvious skill and attunement to the approach of this Court was very clear”.
Moving to the best interests issue itself, Rogers J retained a tight focus on PH’s wellbeing rather than her mother’s views. Rogers J firmly warned against “imput[ing] wishes or feelings or values simply because the close carer or relative has personal views or values of one sort or another”, and dismissed her mother’s suggestion that PH would “almost inevitably” have “expressed the same views as her mother” if she had capacity to do so. Rogers J noted that there was simply no evidence at all of PH’s own views, and to speculate on them would not be right.
Continuing to address the mother’s contribution, Rogers J commented that PH’s mother “was reluctant to disclose either her own or her son’s vaccination status”. This withholding was, the judge considered, “utterly untenable” and “unhelpful and obstructive of a proper investigation”. He found that she and her son “are on the balance of probabilities NOT vaccinated. This is relevant to the issue because it has undoubtedly, in my view, coloured her overall approach”.
The judge doubted whether PH’s mother’s approach to vaccination was as flexible as she’d represented in her position statement, suggesting that the fact that PH had only ever received one (accidental) vaccination was “indicative of a principled rather than issue specific approach” from her mother. He described PH’s mother’s objections as “honest but immutable” and “genuine but without medical foundation”.
Before turning to PH’s GP’s contributions, Rogers J endorsed and repeated the SD refrain:that the Court of Protection’s role was not to arbitrate medical controversy or ventilate speculative theories, but rather to take an individual, fact-specific approach to non-capacitous persons. In this connection Rogers J dismissed PH’s mother’s suggestion that the court possessed incomplete information about coronavirus, remarking that there exists a “robust and reliable” body of medical and Public Health guidance which it would be quite wrong to disregard. Frankly, the judge remarked, “[t]he court as decision-maker is bound to pay close attention to JCVI and MRHA and Public Health England”.
The judge then turned to the evidence from PH’s GP, describing him as “impressive and a GP of some experience” whose “authoritative” evidence had described “profound” advantages for PH in receiving the vaccination. Dismissing PH’s mother’s view that there had been no individualised risk assessment for PH, the judge considered that this GP and other health professionals had properly focused on PH herself, and had been questioned extensively in their analyses. From that questioning there had emerged a unanimous view among the health professionals that, while there may well be small disadvantages for PH in receiving the vaccination (e.g. possibly heavier menstruation), overall the “clear conclusion” was that it was PH’s best interests to receive the vaccination.
Indeed, Rogers J noted that PH’s learning disability, lack of self-awareness and place of residence placed her at the very highest risk level of serious infection.
Accordingly, the judge decided that it was in PH’s best interests to receive her first dose of the vaccination “as soon as possible”, with subsequent (and booster) doses to be administered also to PH without there being a need to return to the Court of Protection. It was, the judge considered, merely “good fortune” that PH had not become unwell already in the pandemic, and not at all indicative that vaccination was unnecessary in the circumstances.
With judgment given on that issue, James Pantling-Skeet asked for a short break to take instructions from PH’s mother on the issue of Christmas contact. The judge obliged, and stated that court would reconvene at 3.30pm.
Reflections
At that stage, I had to leave the hearing to attend to a prior commitment. Professor Kitzinger offered to provide the write-up for the remainder, and I am obliged to her for doing so. Yet even without watching its conclusion, I found it extremely instructive to observe the hearing. Three matters warrant mention.
(1) I was impressed by how sensitively the court handled the controversial issue of coronavirus vaccination. I think it’s right to remark that many who resist coronavirus vaccinations do so on ideological or political grounds, and form something of an ideological minority in society today. How the court handles such minorities surely impacts its legitimacy: if a court rode roughshod over those with minority views, those individuals may lose faith in the court’s fairness and could consider its decisions illegitimate. As a result, I was glad to see Rogers J stress that the Court of Protection is not concerned with airing medical controversy, and instead ground his reasoning so firmly in what was best for PH. Rogers J observed respect for PH’s mother throughout, even when describing her views in no uncertain terms as entirely medically unsound. Such dignified treatment of all, especially in controversial cases, is wholly welcome and important.
(2) Relatedly, I welcomed how much the court recognised the mother’s love for PH. The warmth of that relationship was remarked upon by Rogers J, counsel for the Official Solicitor and counsel for the mother. Recognition of that love seems important for two reasons. First, it implied that ultimately the court was working with rather than against the mother, toward the same end (i.e. trying to keep PH safe), and that the court was merely supporting her caregiving role rather than supplanting it. This appeared to be helpful for the mother in the hearing, and may help her to manage the distress she must feel from her views about PH’s best interests being overridden. Second, and connectedly, recognising the present warmth of the relationship between PH and her mother may help sustain it through this difficult period. It’s likely that PH’s mother will find it difficult to see her daughter vaccinated against her wishes, and PH may perceive that discomfort as a distressing disturbance in their relationship. However, sustaining that mutually loving relationship is no doubt in PH’s best interests, and supported by recognition of the sincerity and longevity of the mother’s love.
(3) Finally, I was impressed by the skilful advocacy throughout proceedings. It is trite but true that advocates should be able to think on their feet, and James Pantling-Skeet’s skilled performance despite late instruction was a Mr masterclass in that regard. Especially so during final submissions when in my view Mr Pantling-Skeet made the mother’s case as convincing as could reasonably be expected, owing to careful representations of applicable law (e.g. rightly remarking that there is no legal presumption in favour of vaccination) and forensic selection of helpful facts (e.g. that the mother’s 17-year custodianship of PH made her uniquely well-placed to assess PH’s needs and interests). Furthermore, during proceedings I obtained written advocacy from counsel for the Official Solicitor in the form of two Position Statements (PS). (The first was the Official Solicitor’s original PS for this hearing. The second, triggered because only four days before the hearing PH’s mother filed her own PS and requested Christmas contact, was updated to respond to the same and reflect the very latest epilepsy-related coronavirus vaccination science). The Statements were clear and profoundly persuasive, and analysing their composition will undoubtedly uplift my own drafting skills. Once again therefore, observing a Court of Protection hearing has proved profoundly helpful for my professional development.
I now hand over to Celia Kitzinger to address the Christmas contact issue and residence.
The Christmas Visit (Celia Kitzinger)
Counsel for PH via the Official Solicitor (Oliver Lewis) had taken instruction over the lunch break on the matter of PH’s proposed 2-week visit to her mother.
“The Official Solicitor wanted me to emphasise at the outset that there’s obviously real love between PH and her mother, and the Official Solicitor would like to say that PH should be with her mother over Christmas, but there are seven reasons why this would not be in her best interests”.
The seven reasons were:
If PH were vaccinated tomorrow (as seemed likely), it would be two weeks before it became effective, i.e. it wouldn’t “kick in” until 7th January.
The Court is entitled to infer that PH’s mother is unvaccinated (because it would help her case to say that she and her son were vaccinated); sending PH to an unvaccinated family poses increased risk compared with sending her to a vaccinated family.
The mother reported that PH’s 21-year-old brother is “coming and going” from the family household, without being able to say where he would be coming and gong from, and this means there is no robust shielding plan.]
PH is more at risk now than previously because of the new omicron variant.
It was entirely accepted that PH would enjoy a visit to her mother’s house. However, of magnetic importance is the fact that PH’s learning disability mean that she’s not able to anticipate events such as going home and seeing her mother for Christmas, so she’s not looking forward to it, and will not be disappointed not to be able to do it, in the way that someone who has no cognitive impairment, or a mild cognitive impairment would.
There are no contingency plans in place for how PH would be cared for if she got covid while at her mother’s home, or if her mother got covid, or if there was an outbreak in the care home and she was unable to return there at the end of the two-week period.
The future residence for PH is as yet unknown. Prospective new care home providers will have to assess her, and the best place for them to do that is in her current care home rather than at her mother’s home.
For these seven reasons, and “with a heavy heart”, counsel did not believe that it was in PH’s best interests to visit her mother over Christmas. It’s “a small sacrifice to lower the risk of her catching covid that could be fatal”. A representative of the care home had earlier said: “Our staff view is that if she goes home she’ll enjoy spending time with her mum… but we would also be sure to give her a very special Christmas at the care home”.
I got the impression that neither of PH’s parents had expected arguments against PH visiting her mother for Christmas. The father said that in his view “I can’t see that circumstances have changed massively”, despite omicron, from previous occasions when PH had visited her mother. He also thought that PH’s brother could be open to discussion about how to mitigate the risks – perhaps by staying with his girlfriend, who lives nearby.
Mr Pantling-Skeet asked for another adjournment to discuss the situation with his client (PH’s mother) and – perhaps – with the brother.
And Oliver Lewis suggested that if there was to be a break in proceedings, it would be useful to see if – now that PH was to be vaccinated – her current care home would be willing to extend her residence there until the end of January.
On recovening, we heard from the legal director for the care home who now stated they were willing to keep PH’s placement open through to her second vaccination (so for another 8 weeks), on the understanding that the local authority would make arrangements for her to move to her new care home the following week. She expressed “disappointment” with the local authority’s communication so far about new placement possibilities.
The legal director had also reminded Oliver Lewis that PH would have to isolate in the care home for 14 days on return from a visit to her mother. Oliver Lewis added that as an eighth reason why a Christmas visit was not in PH’s best interests.
A social worker for the local authority said that “since notice was served, we have been actively looking for an alternative placement. We can’t give a time frame because it can take from 2 days to 2 years. It’s not easy and straightforward”.
The judge interjected: “this mustn’t drag on for two years!” – and then invited James Pantling-Skeet to address him on the matter of the Christmas visit. As counsel for PH’s mother, James Pantling-Skeet engaged with each of the eight points raised by Counsel for the Official Solicitor as reasons why a visit to her mother was not in PH’s best interests.
The fact that vaccination is not effective for two weeks needs to be weighed against the psychological and emotional benefit of visiting her mother, and both PH’s and her mother’s right to family and private life.
It’s difficult to quantify the risks to PH of being with people who are vaccinated vs. those who are not vaccinated. Even vaccinated people can transmit the virus.
PH’s brother has agreed that he’s happy to reside with his girlfriend while PH is at his mother’s home.
There are risks from omicron in either the care setting or in the family home – and the previous judge did rule that it was in PH’s best interests to spend Christmas with her mother.
The Official Solicitor’s view is that PH is not able to anticipate and look forward to visiting her mother. Although it might seem that way reading the papers, the mother does feel she would look forward to a visit: when they speak on Facetime PH says, “See Mummy”, indicating some expectation of contact. This is the mother’s insight from being PH’s mother and knowing her in the way that she does.
Contingency plans in the event of illness are as they have always been before Covid. The mother would work with her local support network to seek help, taking into account who has a negative test result.
The matter of residence has now been sorted for the short-term
The fact that PH will need to isolate on returning to the care home is not ideal, but the benefits to her of having contact with her mother over the Christmas period would outweigh the disbenefits of isolation.
Counsel for the mother also said that the mother would comply with whatever testing was required to assure her daughter’s safety in the view of the court.
Judgmenton Christmas visit
The judge saw merit in six of the eight considerations raised by the Official Solicitor: the brother’s role is now “diminished in scope” (because he’s agreed to stay with his girlfriend rather than with his mother) and the judge did not attach much weight to the seventh point (that future care homes would benefit from PH being on site) and chose to “disregard” that.
This was, he said, “an acutely difficult matter” but it would be “incompatible with the decision I took earlier this afternoon if I were to sanction something that would undermine PH’s safety, simply to assuage [her mother’s] understandable desire to spend Christmas with her daughter. Neither regular testing, nor the removal of [Brother] is sufficient.”
He was also concerned about where PH would live in future (“it would be a disaster if in February we were no further forward”) and a next hearing to address this is listed for 20th January 2022.
As the hearing ended, plans were in train to vaccinate PH within the hour.
I am a Consultant Clinical Neuropsychologist for The Disabilities Trust and director of Yorkshire Neuropsychology. I specialise in assessments and rehabilitation provision for people who have acquired brain injury. I provide expert witness reports to the court but until recently, I have not been to court.
Like many psychologists, I have for many years heard words of caution about moving into court work. Some colleagues have commented on not wishing to go into this field and others expressed worries of the adversarial nature of cross examination and anxiety that their work may be negatively evaluated.
These cautions are not unfounded. As an anonymous brain injury case manager states in a review of the role of an expert “the reputation of an expert can be lost in an instant. We are all only as good as our last case, as the careless, hubristic, unlucky or over-worked can find to their cost” Furthermore, the case of AMDC v AG[2020] EWCOP 58, where the expert’s evidence was found to have substantial deficiencies under cross examination has highlighted the need for experts to both have expertise in their field as well as adequate understanding of their role to the court. (See the blog about this case from observers, “When expert evidence fails”).
But my first experience of being a witness in the Court of Protection made me realise that whilst it is important to undergo training in being a witness and to safeguard against these risks, it is important to not lose sight of the value a health professional can contribute to court cases. Perhaps in urging caution without considering the benefits there may be a risk of putting off clinicians from contributing to a field where they have a valuable role to play.
Recently I was sworn in to give evidence in the Court of Protection as a witness of fact for the first time. I must admit that that the court date being discussed and being told that it would be helpful if I could possibly attend had not made me realise that I was to be giving oral evidence as a formal witness. I had attended for a short time at a previous hearing and contributed briefly in a less formal way. However, the benefits of identifying what I was being asked to do only the day before I was due in court meant at least there was not much time to overthink it.
The issue in the case was whether P should be admitted into a rehabilitation setting against their will under court order and I was to be cross examined on my assessment of P and my recommendations for how that admission ought to take place.
I am pleased to share that the experience was interesting and not intimidating. I was asked questions by three different advocates, and the judge, with the aim of confirming and expanding aspects of my opinion. One advocate quite reasonably asked if the issues I had raised in an email for the court to consider meant that I had hesitations about the appropriateness of the admission. It was a valid query but I was able to share a view that we should never take the serious step of depriving someone of their liberty without adequate consideration of whether it was required and justifiable. This did not mean that that I am expressing an opinion on the appropriateness of the action, as I felt that this was for the court to decide.
A key focus of the case was on the way admission should proceed and whether the ‘graded admission’ which I had proposed was appropriate or not. I found the process of giving evidence helpful in putting across typical needs of someone with autism and that a graded admission allows consideration of anxiety around adjusting to change. That whilst there may be justification for a person to be deprived of their liberty against their wish, that does not mean that the process of this cannot be conducted with due consideration of their autism needs.
I understood that social services were initially in disagreement with this idea. The concern was that it would be better to arrange P’s admission quickly and that doing so more gradually would lead to an increase in their anxiety, and ultimately that they might refuse to be admitted. I was able to posit; however, that the situation would be no worse than the current one of P refusing to attend with a possible police escort being considered; and that a graded approach increased the chances of their engagement and gave them some control over the process. The court accepted this and plans were approved that authorised P’s admission but in accordance with a carefully designed plan that took a graded approach, with shorter visits prior to overnight stays to try to acclimatise P to the plan.
In fact, in the end the graded process did not aid the situation. But it nonetheless felt ethical for the team to have at least tried what I considered to be a less restrictive approach for P and one that tried to place their wishes more centrally in what was happening-an approach that is key to the person-centred nature of safeguarding in the Care Act.
At no point in court did it feel confrontational or like I was being attacked when I was being asked questions in court. Indeed, the entire process felt respectful, even if a little alien in its formality.
On reflection, attending the COP as a witness of fact was a valuable experience before being called in an expert capacity and helped to build my confidence in my skills in defending my opinion and how I can help court consider a patient’s neuropsychology needs.
Dr Catriona McIntosh is Consultant Clinical Neuropsychologist for Yorkshire Neuropsychology and The Disabilities Trust. She tweets @Catrionamcinto1
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
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[2020] 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) [2019] 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.
Parties
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) [2020] 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.
Reflections
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.
UPDATE: The hearing in January was vacated – we’re told by agreement. We asked what the outcome was for AA and we were not informed. I believe, from a comment made in a public seminar about a case which I think may have been this one, that AA did leave the UK in an air ambulance but I do not know this for sure.
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia
A woman in her 50s, 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. She’s in a minimally conscious state.
The question of whether it is in AH’s best interests to continue to receive mechanical ventilation was addressed back in August 2021 by Mr Justice Hayden (blogged here), who decided that it was not. He said: “I make it clear that ventilation should be discontinued by the end of October 2021”. The full judgment is here: Cambridge University Hospitals NHS Foundation Trust v AH & Ors (Serious Medical Treatment) [2021] EWCOP 51).
Her family appealed and the Court of Appeal found in their favour.
However, the appeal was not granted on the basis of any of the four substantive grounds of appeal: (1) that Hayden J had given insufficient weight to AH’s wishes as recorded on the ReSPECT form; (2) that he’d failed to appreciate the importance of her religious and cultural values; (3) that he’d not adequately considered her past and present wishes and feelings; and (4) that he’d failed to give sufficient weight to her Article 2 right to life. All those grounds of appeal were dismissed.
The appeal was allowed on the basis of procedural unfairness, relating to a visit from Mr Justice Hayden to AH, after the hearing had concluded. (For an account of the Court of Appeal hearing see this blog post, and you can read the full judgment from the Court of Appeal here: Re AH (Serious Medical Treatment)[2021] EWCA Civ 1768).
This meant that a re-hearing was necessary.
Following a relatively short ‘directions’ hearing on 29th November 2021 (blogged here), there was a hearing before Mrs Justice Theis on 7th and 8th December 2021. This blog post offers some reflections on that hearing from four observers and is written in advance of the judgment.
Counsel were Simon Miller of Harcourt Chambers for the family, acting pro bono through the Bar Pro Bono Unit, Nageena Khalique QC for AH via the Official Solicitor, and Katie Gollop QC for Cambridge University Hospitals NHS Foundation Trust.
An updated expert medical report on AH (by Dr Chris Danbury) was now before the court. His findings were clear. After almost a year in intensive care, there was no prospect that she would improve further. She would never be able to live without mechanical ventilation. She would never emerge from the minimally conscious state. There was, in his view, evidence of deterioration since he had last assessed her in August 2021 and AH is now in a terminal decline of consciousness. She is dying.
This was also the view of those treating her. Evidence was given in court by two treating consultants, Dr A (Consultant Intensivist) and Dr B (Consultant Neurologist), and by Ms C (Matron of Adult Critical Care).
The family view was radically different. Three of AH’s children and her sister gave evidence of having seen slow improvement in AH’s condition in the four months since August 2021. They see AH as more alert and aware, and as more able to communicate with them. They provided videos of their interactions with AH which they considered illustrate that improvement. Dr Danbury had reviewed this videos but does not see them as providing evidence of improvement in either her physical or cognitive function. (We’ve blogged before about the use of videos as court evidence, and the differences between families, experts and others in what is “seen” in them.)
There is, then, a very stark difference between clinicians and family in how they see AH.
The Trust position (now supported by the Official Solicitor) is that withdrawing ventilation under controlled conditions with AH’s family around her in a peaceful and prayerful atmosphere is in her best interests. The alternative may well be, in their view, a sudden death unattended by family. In Dr Danbury’s view, a catastrophe will occur at some point “and is likely to be sudden, unexpected and most likely without any opportunity for her family to get to the ICU in order to be with her while she dies“.
The family position is that it is in AH’s best interests to continue to receive mechanical ventilation. They believe she is showing signs of improvement and that she wants them to “fight for her“.
Four observers reflect on the hearing, bringing a range of different perspectives and experiences to their descriptions of what they witnessed in court.
1. Family testimony: Relieving the burden, by Upeka De Silva
I observed incredibly brave family members giving powerful testimony in support of what they believe their mum (or sister) would want.
In doing so, they did not hold back or censor what they had experienced in hospital. Although they accepted that she had generally had excellent care, they also voiced their frustrations about what they’d experienced as poor practice. It must have been cathartic to be able to speak out about it in this public and respectful setting.
[Amended text from here to end of this section, 14th December 2021] Before reading the judgment, my primary concern was that their feedback should be heard and valued not just by the Trust in this case but by others too, so that their experiences could be fed back with a view to improving practice.
Reading the judgment (especially paras 26, 33, 39, 89) really brought home to me – more than in the court hearing itself – that specific and detailed evidence was provided about the excellent care that AH had received while being ventilated for over 300 days.
Providing this level of care during a pandemic is particularly noteworthy and it is useful that this has been made public.
It is deeply unfortunate that the family still experienced distress about AH’s care. I appreciate it is not easy, but I am always hopeful that families and clinical teams can find ways to work together in the best interest of the patient.
Taking the burden from families
The barrister for the Trust (Katie Gollop) rightly reassured the family member who struggled to answer a question about what his mum would want, that one of the benefits of having the case heard in the Court of Protection is that it passes the responsibility of making the difficult decisions to the judge.
This is not to minimize the immense burden of duty that families must feel when giving evidence and advocating for a loved one, but it must provide some relief.
With this in mind, I would like more to be done to alert families to this valuable avenue of support when faced with disagreements about life-sustaining treatment decisions and end-of-life care.
Research shows that families often consider court hearings to be a deterrent to pursuing what they believe is right for their loved one. But here, as in other reported cases, it’s clear that for this family the court hearing gave them the reassurance that they had done everything they could possibly have done to fight for their mum.
The importance of advance statements
My take home message from this hearing, as in so many others in the Court of Protection, is that we should all prepare for possible future lack of capacity.
We can write down what makes our life worth living – and describe the circumstances under which life would not be worth living for us – so that if we become incapable of making and communicating decisions for ourselves, our family and all those caring for us, can hear our voice.
Documenting our preferences in this way, using an Advance Statement, in a calm and thoughtful manner, rather than having our wishes interpreted by clinicians, gives us the opportunity to comprehensively convey what it is that matters to us and what it is that we are willing to endure.
It was argued at the Court of Appeal (but not during the re-hearing) that AH’s preferences were in fact documented in a ReSPECT form. However, in para 46 of the Court of Appeal judgement it was held that the ReSPECT form:
“is directed, as is clear from the title, to emergency care and treatment. It is not directed to long-term treatment and so provides very little assistance to whether AH would want treatment to continue in her current condition which is very far from an emergency.”
Both a ReSPECT form (for emergencies) and an Advance Statement (for a much wider range of possible situations) are invaluable tools which enable individuals to get the treatment and care that is right for them while also supporting clinicians to make genuinely person-centered best interest decisions.
If AH had completed an Advance Statement explaining her religious, cultural and family values, her family may not have had to endure as many grueling questions about she would have wanted.
Even though they cannot demand a clinically inappropriate treatment, having written evidence of AH’s wishes, would have made the family’s powerful evidence even stronger.
Free Advance Statements and Advance Decision forms can be found at: www.mydecisions.org.uk
Upeka de Silva is Policy Officer for the charity, Compassion in Dying. She tweets @de_upeka
2. “What would I want for myself?” Facing up to burdens of treatment, by Rhiannon Snaith
This was the first time I’ve observed a Court of Protection hearing. It’s very different from what I’d seen in criminal courts (when completing work experience with a local newspaper). It was very intense, and you can’t help but get emotional and think “what would I want for myself?” or “what would I do if this were my loved one?” and go back and forth in your mind.
What really struck me about the case was that it gave me information about the potential burdens of treatment, giving me tools for thinking about the question “what would I want?” It made me confront some issues which I hadn’t really faced before, and maybe that few of us consider in depth.
Usually, you just think of being in Intensive Care as being ‘out of it’, but the doctors in this court hearing really described how being mechanically ventilated might feel for this patient who is in a minimally conscious state and has many other complications (e.g., paralysed, muscle wastage and severe neurological deficits).
Sometimes, it felt as though the doctors could be emphasising the burdens of ICU treatment to persuade the family to agree to letting the patient die – but that doesn’t stop their accounts of the potential burdens from being true.
The intensivists who gave evidence explained that Intensive Care was accepted and justified as a temporary measure if it helps stabilise a patient and give time for assessment and/or recovery – but they clearly did not see it as a humane long-term solution. Nor is it a practical one because, as the independent expert commented, “in intensive care, generally if you are not getting better then you are getting worse”.
The concern in this case was that the patient had been mechanically ventilated for almost a year and given her severe brain injuries and dependence on long term ventilatory support, combined with her specific and complex care needs, there was no prospect of her ever leaving ICU.
The treating team felt she was deteriorating and was very likely to die soon (potentially in a sudden and uncontrolled manner). All three clinicians involved in her care gave evidence that emphasised the burden of the treatment when there was no balancing benefit of recovery. It was also clear that all three were personally distressed by witnessing, or being involved in, what was done to this particular patient.
One of the treating doctors talked about ICU being a “dehumanising” environment for patients and referred to research showing that people who recover sufficiently to report on their experiences can be left with Post Traumatic Stress Disorder.[i]
Another doctor involved in treating this patient became quite emotional describing what was done to AH, outlining the distress of desaturation, having to be turned every few hours, and the intrusion of personal care associated with double incontinence. He said that, when there was no hope of recovery, “we know that many people in this situation do elect not to continue with the treatment that continues their life.” In this case, the situation was made worse because she might not understand what was being done to her, and damage to her memory meant she could not even recognise her caregivers.
The ICU matron (who gave evidence as well as the doctors) explained that, because of her brain injuries “despite being with us for almost a year, none of the team are familiar to her. She is meeting strangers every day”. They now try to avoid hoisting her into a chair (to help with skin integrity) because “the whole process of hoisting, even when someone understands, is frightening and AH was looking very frightened when we did that”.
This comment hit home as I’ve worked in care homes and was hoisted as part of my training. Even for me it was not a nice experience. It made me think that it must be so much worse if you don’t understand what is going on and don’t have any control over your own body. I‘ve certainly seen how hoisting can be a really upsetting and scary process for some residents, even in a routine care setting.
On top of this, AH is subjected to physically intrusive medical treatment such as the mechanical ventilation itself and associated interventions. This was highlighted by evidence from the independent expert, Dr Danbury (the 4th clinician to give evidence in the court, but one who was not part of the care team). He said that deep suctioning, which this patient requires regularly, could be particularly painful. It has been described by some survivors as “akin to having a red-hot poker pushed down your throat”. This witness also described how patients who have been severely ill and in ICU for a long time report terrible disorientation and “psychological scarring”.
Summing up in her closing statement, Katie Gollop QC (representing the Trust) highlighted the relentless and repeated interventions carried out on AH. She referred to witness evidence to highlight that the treatments necessary to sustain this patient’s life were ‘tortuous’ and a ‘torment’ for AH.
The family do not necessarily accept the clinicians’ descriptions of the ‘fear’ ‘pain’ & ‘psychic anguish’ this woman might be suffering. In any case, the decision must be a balanced one that also draws on what she would have chosen based on her own beliefs and values, and the acknowledgment of the comfort and pleasure she appears to derive from family visits.
For me, however, this case left me with a clearer sense of just how excruciating some treatments might be and that time in ICU is not a neutral ‘suspension’. It highlighted the importance of grappling with this information and thinking for oneself what one might want and trying to inform the right decision for others.
Rhiannon Snaith is currently studying for her MSc in Research Methods at Cardiff University, in preparation for starting her ESRC PhD scholarship on “The Role of Journalists in Reporting End-of-Life Decisions”, supervised by Professor Jenny Kitzinger. She’s just started tweeting @Rhiannon_Snaith and is looking forward to joining in online discussion of law, ethics, and end-of-life.
[i]I was only able to attend the second day of the hearing so did not hear this witness myself, but benefited from access to Jenny Kitzinger’s (anonymised) notes from her observations of the first day. As recording is not allowed in court, these quotes are as close to what was actually said as possible, but are unlikely to be verbatim
3. The problem with ‘splitting’, by Claire Martin
“Splitting is a very common ego defense mechanism. It can be defined as the division or polarization of beliefs, actions, objects, or persons into good and bad by focusing selectively on their positive or negative attributes.”
I am a clinical psychologist, working in the NHS. I get on with some patients better than others. Sometimes there seems to be a better ‘match’ or what I offer or the way I relate seems to suit some people better than others. There can be a tendency, for us all in the caring professions, to feel that the people we get on with less well are ‘hard to engage’ (instead of ‘I find it hard to work with this person’), or ‘difficult’ (instead of ‘they are asking questions I find it difficult to respond to’) or who exhibit ‘challenging behaviour’ (instead of ‘their behaviour challenges my skills’). We can put the blame for people not liking what we do on them, instead of looking to see how we could do things differently or handing over to someone else. Psychological processes and patterns of relating are happening all of the time, between us all, and do not reside only in our patients and clients. We all bring our own experiences and ways of being to our professional lives. Difficulties can arise around communication and how we relate, rather than ‘mistakes’ as such. Problems with communication are the most frequent formal complaint to NHS Trusts.
AH’s family spoke from their experience and their hearts when describing her. They all clearly love AH dearly, desperately want her condition to improve and for the court to rule that she should continue to be ventilated and allowed to survive for as long as possible. They think AH also wants this.
Their evidence that they witness purposeful communication that demonstrates an understanding of her situation (that she requires ventilation to survive) is at odds with the evidence from AH’s treating clinicians and the expert witnesses who have assisted the court.
Balancing all of the evidence and deciding whether it is in AH’s best interests to continue with life-sustaining treatment must be a hugely challenging decision for the judge to make.
At the end of the hearing, I was left with a feeling of unease about the way in which the family was psychologised when they spoke of differences in the quality of care they experienced from different members of the treating team.
Part of the family’s evidence had been about their experiences of different doctors and nurses involved in AH’s care. Their evidence was mixed – one doctor in particular was described as ‘caring’ and ‘patient’ with AH. Another doctor was experienced as ‘just wanting to pop the tube out’ and ‘not patient’ with AH when assessing her.
The eldest son said: “Dr A’s judgment cannot be trusted” – contrasting him with Dr B who “makes a lot more conscious effort to engage with mum and to listen to us”. Looking across the courtroom at Dr B he said, “I know you care about my mum, Dr B, I know you do.”
They also said of some nurses: ‘they’re busy, they talk at [AH], others talk to her. There’s a difference. Sometimes, I have seen, some nurses ask her a question and before she’s had time to answer – I can see she’s going to answer – they’re gone’ (AH’s sister).
Whether the professionals involved think that they do or don’t fit this characterisation is not the point. This is how the family experiences their interactions with them and observes their interactions with AH. They did not characterise all professionals in the same way, and were keen to point out excellent care and some staff who have a ‘gentle manner’.
“The COVID pandemic has been brutal and caused situations of emotional brutality up and down the country. At a different time, there would have been scope for more family visiting, perhaps scope for more fruitful discussions and the ability to come to terms with the nature of the illness. All of those things have been denied to this family. It had seemed in August that some family members had come to terms with the reality of the situation. Since then, psychologically, in terms of absorption of that information, that capacity has been lost. How can somebody so full of life, such a powerful person, right at the heart of this family, suddenly be taken away from them and reduced to someone totally dependent on others when before she had others dependent on her? This is unbearable and unacceptable to them. Family members have developed coping strategies to enable them to bear the unbearable. They think she’s getting better, when all the evidence is that she is not. They believe she’s accepted her situation, when the evidence is that she doesn’t have the mental capacity to understand her situation. They say she tells them what she wants, when all of the evidence is that she does not know what she wants because she does not have the capacity. They say she’s a fighter and wants to fight on, when the reality is that air is painfully pumped down into her lungs through a tube down her windpipe. They say she can improve, when there’s been no improvement. They say she needs more time, when there has already been four months more time and Dr Danbury was very clear about her condition and prognosis. Sadly, very sadly, [one of AH’s daughters] who was very capable of understanding the situation in August makes some of the most unpleasant accusations against the hospital – as unpleasant as they are baseless. There is the splitting mechanism in action: Dr B the good doctor, Dr A the bad doctor. All this is understandable, but Your Ladyship is concerned with AH and not with the family.”
I don’t know if the family is mistaken about seeing improvement and an ability to understand and communicate in AH. That picture is certainly at odds with the clinical assessments presented by the team caring for AH and by the expert witnesses.
But even if we assume that the family is desperate to see what they want to see in terms of progress for AH, and has misinterpreted ‘signs’ from AH and over-valued change as recovery, it does not logically follow that experiencing Dr B as caring and Dr A as uncaring is unfounded – or indeed ‘splitting’.
That would be to assert that, because the family is wrong (according to the NHS Trust) in their assessment of AH’s condition, progress and prognosis, they cannot are trusted to report accurately their experience of how people relate to them and to AH. And, moreover, that the reason they report different experiences with different clinicians is due to psychological difficulties that reside in them.
The term ‘splitting’, in particular, can be used pejoratively as a defense within systems of care and applied to people given a label of ‘personality disorder’. It is not a term to be used lightly, or by those untrained to apply it.
If the court relies on expert medical evidence to make submissions and declarations about physical health conditions, it is not appropriate to bandy about psychological terms and attach them to parties without expert psychologist/psychiatrist evidence – which is then open to testing in court.
Good reflective practice – and the NHS Constitution – require that we all, in the NHS, respond to concerns, feedback and patient experiences with humility and a willingness to learn about our ways of working and relating.
Commitment to quality of care
We earn the trust placed in us by insisting on quality and striving to get the basics of quality of care – safety, effectiveness and patient experience – right every time. We encourage and welcome feedback from patients, families, carers, staff and the public. We use this to improve the care we provide and build on our successes. ( NHS Constitution)
Suggesting that the family is lacking in objectivity because they are in some way psychologically compromised serves the purpose of undermining and discrediting their evidence. This was not necessary to powerfully argue the Trust’s case that ongoing life-sustaining treatment is not in AH’s best interests. The medical evidence stood alone.
This could be described as a ‘power-over’ position – appropriating powerful psychological terms (not likely to be familiar to the family in their actual meaning, and without any expert evidence to support the claim) in a submission that cannot be challenged.
When can we, as a patient or relative, say that care is not good-enough without that concern being psychologised away?
Or raise that the way this person speaks to me/my family member is not experienced by me as caring/compassionate/helpful without that being recast as a problem within me?
A tweet from Kathryn Mannix, author of With the End in Mind and Listen: how to find the words for tender conversations addresses this point and her analysis should be read by everyone in the caring professions. She says she has been the doctor whose words were not understood as she intended them to be by patient and family, and she takes responsibility for that miscommunication. She posted photos of this text (from her book, With the End in Mind (pp. 114-115) )attached to a tweet. The text describes an interaction between herself and Maggie, the partner of Fergus who has just died under her care.
These two pages of text were posted by Kathryn Mannix on Twitter (5th June 2021) attached to her tweet.
So, “I have been the doctor“, says Kathryn Mannix, “whose words were relayed by a v sick patient to a relative, & what the relative heard was not what I said. But it WAS what the patient/family understood from what I said, so I was responsible for that miscommunication. Communication matters.“
I was pleased that counsel for AH via the Official Solicitor said both that she believed Dr A to be a “compassionate clinician”, and also that she “does not accept the Trust submission that there’s been an attempt at splitting”.
Counsel for AH asked whether – without any aspersions being cast against the two clinicians the family say they have difficulty with – some adjustments could be made:
“Placing AH’s wishes and feelings at the forefront, how difficult would it be to ensure those two clinicians are not involved in her care? It is best to ensure no friction at this time. I wonder if that is beyond the resources of the Trust in the circumstances of this case.”
Sometimes it may be necessary to accept that we are not the person a family needs at a particular time. And we can do that without pathologizing the family in a situation like this.
Claire Martin is a Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core group of the Open Justice Court of Protection Project and has published many blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin
[i]We are not allowed to audio-record hearings in court. This quotation is an amalgam of the three versions of what Katie Gollop said that were written down/typed by Claire Martin, Jenny Kitzinger, and Celia Kitzinger. We recognise we each had slightly different versions, but the differences were small and do not seem to us to be significant for the purposes of the argument here (e.g. the difference between “come to terms with the reality of the situation” vs. “understood the reality of the situation”). This is true of all the other quotations in this piece. They are unlikely to be verbatim, but they are as accurate as we can manage under the circumstances.
4. Human connection, communication and capacity: Family experience of trying to determine AH’s wishes, by Jenny Kitzinger
For me, the most moving, and complex, part of this hearing was the family accounts of visiting AH – and how this informed what they thought should now happen.
In the witness box at the Court of Protection at this re-hearing on 7th and 8th December 2021, AH’s adult children and her sister vividly described their experiences at the bedside, explaining how they felt AH had become more alert and engaged since the hearing before Hayden, J back in July 2021.
Their accounts illustrated powerful human connection. The family were also adamant that they’d established meaningful communication with their mother/sister, and that AH conveyed a consistent wish that they should keep fighting for her; she does not want to die.
In this blog I record what the family reported and ask: How can this help with ensuring that AH’s feelings are factored into the best interests decision? And what is the relationship between human connection, communication and capacity?
I focus on this partly out of my academic interests in best interests decision-making and the resonance this family’s experience has with the stories of relatives of other severely brain injured patients interviewed for our research at the Coma and Disorders of Consciousness Research Centre.
But the reason I found myself so intensely engaged with this family’s account was because parts of what they said reminded me of (and sometimes contrasted with) my own experience of being at the bedside of my sister, Polly Kitzinger, while she was in a Minimally Conscious State for two years after a road traffic accident in 2009. It also connects to my ongoing experience of making best interest decisions for her as her court-appointed deputy for Health & Welfare.[1]
The clinicians’ perspective – emphasising the burdens of treatment and lack of capacity
Clinicians giving evidence in court (and the reports read out from other members of the multi-disciplinary team) describe AH as predominantly either sleeping, or neutral (‘just lying there’), or when she is alert, often appearing tearful, fearful, anxious or in (psychic or physical) pain. Such distress was sometimes, but not always, linked to the necessary interventions she undergoes to be sustained alive in intensive care (as also highlighted by Rhiannon Snaith (above)). They emphasised that this independent, family-centred, very private woman would have to remain on a mechanical ventilator in intensive care for the rest of her life. She was likely to die soon, one way or another: the issue was not whether she would die, but how and when.
In so far as AH can communicate or understand anything at all, the clinical assessments suggest this is very minimal. A recent report from the specialist Speech and Language Therapist concluded that: “meaningful and purposeful communication remains extremely limited. If anything over last two months communication has deteriorated with increased signs of what appears to be distress”. She was never able to initiate communication or spontaneously express her needs. There was some simple command-following and someYes/No responses, but these were not completely reliable or consistent, and were not adequate to support functional communication or inform a significant decision.
The family perspective – emphasising human connection and communication
The contrast between the clinical accounts of AH and those offered by her family perspective was profound. Family members did not focus on deficits in understanding or communication: instead they focused on their mother’s fight to live, family love, mutual recognition, comfort, concern and human connection. They also talked about their mother making choices and communicating her wishes, including in response to family efforts to ask her about what she wanted in her current situation.
One son, ‘K’, described how when he went in to see his mother she “lit up” and was “transfixed on me”. His reports that his aunty said “she’s looking at you, she recognises you…she’s really happy to see you”. He placed his head against her and “she was pushing her head against me. I had a comforting feeling…. She was giggling and smiling at me.”
A daughter, ‘S’, described how, after coming back to the UK to see her mother after some time away: “You could see her emotion in her eyes… She cried when she first saw me, obviously, and she got to see her grandson. Her eyes fixed on him, she knew who he was”. During this visit she “felt like I was having meaningful discussion with her”. Later, when visiting her mother along with her sister, she told her mother about a deeply personal and sad recent experience in her own life: the three cried together, with her sister lifting her mother’s arm to place it around her.
It wasn’t all intensely serious: there was humour too. The oldest son, ‘A’, described a family visit involving “a cousin who was supposed to marry her when she was young”, who was joking by saying “come on, let’s go get married now you’re single”. “Oh my god, the smile on my mum’s face”, he said. “I was cracking up, I was laughing, she was laughing – you just know she’s dying of laughter inside”. Another time, “one of the patients farted really loudly: it was gassy, it was really loud, it was BAD. And I said, ‘that wasn’t you, was it Mum?” and she was smiling”.
The family seem to be able to help AH feel relaxed and safe too. Family members described how they could soothe her to help her accept interventions. One particularly distressing scene was described in which AH’s youngest daughter, Daughter A, arrived while nurses were attempting to place a tube into her mother’s rectum. After gently talking to her mother to explain why it was necessary, her mother appeared willing to comply and “there were no more tears’.
The family were clearly skilled in trying to maximise AH’s opportunities to communicate by ensuring she was clean and comfortable, and was given enough time to respond (all elements recommended in professional guidelines).
They are, of course, not coming in with painful instrumental goals (suctioning, hoisting, turning) – which might make her tense and overwhelmed. They were clearly engaging with her in empathetic, meaningful, sociable and familiar ways (including familiar religious or cultural rituals). They might also bend the rules: one son said he sometimes lowers his mask as “she communicates better if she can see my face”.
They had refined practices to try to ensure answers to questions were accurate (e.g. asking the same question in different ways) and they had developed routines to check for sources of discomfort, e.g. reporting occasions when asking about different parts of her body in turn had allowed them to detect, for example a hand twisted under the blankets, or the fact that she had soreness behind her ears.
They also tried to ensure her choices to allow for pleasant experiences: anticipating what she might like based on their long familiarity and love for her, inviting her to nod or shake her head or to use tongue movements as they offered her choices about having her nails done, her hair dyed, or deciding, for example, what television programme to watch.
AH is clearly at the beating heart of this loving and devoted family and family time was created around her too (within some constraints due to Covid). Family members usually visit in pairs and there is an emphasis on including AH in conversations. AH’s sister described an interaction between herself, her niece and a nurse and how AH was part of that, commenting: ‘She actually belonged, and was not forgotten about’. The clinician’s view of AH made no sense to her: “I feel she’s communicating back to us. I find it really difficult to say she’s deteriorating. She’s just there. She’s there. I do feel that she’s there.”
This contrast between family experience and clinical accounts is even more vividly described by the son who declared that in reading about his mum in the notes and public reports, “it’s like she’s just a corpse with a damaged brain and a machine attached to her – but this woman watches TV!”
I recognise much of what this family describe from my own experience of being at the bedside of my minimally conscious sister – and it is familiar from interviews with other families in this situation too(see examples on thehealthtalk resource).
As family members, many of us will recognise how someone with profound brain injuries may nevertheless sometimes ‘light up’ when we enter the room and gaze unwaveringly at us, as if with great love or as if trying to communicate by telepathy.
We also know how our sister, partner, child or parent can seem to absolutely trust us, and we can (sometimes) soothe them or help them stop struggling against a care intervention that we feel it would be best they receive.
They may also appear to focus all their energies in an effort to communicate with us (or even to engage wih a phone call from another relative) and may share (or mirror) our own emotional responses, or burst into laughter as we joke around trying to lighten the mood.
Minimally conscious patients can, at times, give meaningful responses to careful questioning, even if we can sometimes be unsure about accuracy, or responses are inconsistent (or very consistent with some questions but not others, perhaps)[2]. We have probably also all witnessed some staff who are patient and skilled in maximising all possible communication (and helped to add to family knowledge about good approaches), and others who seem impatient or disrespectful (talking over, not to, their patient).
The clinicians too accepted (in part) many aspects of what the family reported. Having seen videos of AH with her family or observed such interactions themselves, clinicians mostly accepted that the family were getting some connection with AH that was different from staff engagement with her.
Dr A said: “I accept the richness of their relationship and communication with her is different from that of all the treating team …I fully agree that the family have a richer substrate of communication with her…There is a shadow of AH left and it is focused on the people that she knew…Her family are ingrained on her”.
Ms C, the matron, said“The videos echo what I’ve seen at the bedspace when family visit. I’ve seen those interactions face to face as well”…
Dr B, the consultant neurologist said “there is no question, when the family arrive the level of distress goes down. ”
The independent expert, Dr Danbury commented that it is common that people with severe brain injuries are more likely to respond to familiar faces and that “long term memory is generally preserved at the expense of short term memory [.. ] so it doesn’t surprise me family get the best out of her”.
The fact that family often “get the best” from a patient is well established in the clinical literature. That is why family are encouraged to be part of assessment processes and to report, or indeed video, their interactions. (See the RCP Guidelines.) The closing statement from counsel for AH via the Official Solicitor underlined the “clear and cogent evidence from the family, who know their mother very well”, emphasising the the fact that family may pick up on signs missed by professionals and that the family are attentive and observant. Family evidence must be factored into decision-making.
However, quite how family members interpret what they experience, and exactly what weight should be placed on what they learn from their mother, creates more conundrums.
Questioning the implication of ‘responses’ – the communication conundrum
Where clinicians differed from the family was in their views about the accuracy and consistency of AH’s “communication” i.e. whether expressions or gestures which appeared to indicate ‘yes’ or ‘no’ were always intentional, and, if they were, whether they really always reflect an understanding of the questions or issues being discussed.
Dr B explained how in seeking to ‘test’ a patient’s understanding it was, without the right training, very easy to inadvertently cue something (e.g. in the way one read out the optional answers, placing emphasis on the correct answer). He also pointed out that “with a yes/no response you are already at 50% just by chance”.
Although seeming more ambivalent about how to interpret AH’s emotional responses, members of AH’s care team also cautioned against always interpreting something as a ‘response’ when it could sometimes be observed happening ‘randomly’ when family were absent and no one was interacting with AH at all (e.g. ‘random tearfulness’). It was understandable that family members would read everything as ‘meaningful’ and construct a narrative around it, but this was not necessarily always the correct interpretation.
Some apparent responses to conversations were also explained away by the clinicians as potentially being ‘emotional’ mirroring rather than cognitive processing. A particularly excruciating discussion revolved about scrutinising one daughter’s report of explaining to her mother how she’d recently suffered a painful personal loss, and how her mother and she (and her other sister too) wept together, with her mother’s arm around her for comfort. Dr Danbury was asked to comment on AH’s tears in this situation. It was, he said, a “tricky” experience to interpret:
“But you could say – [Daughter S] and her sister were upset – the body language was one of sorrow and upset. It may have been that her mother was responding to the body language of her daughters rather than a true understanding of the words themselves. That is an alternative explanation. It is difficult to say that she [AH] understood [what was being said to her] as a multi-level statement.”
For the clinicians, there was nothing in the family’s experiences that undermined their view that AH could not understand her current situation, and also that she certainly did not have capacity to make a decision about it (including the sort of ‘supported decision-making’ that might work for some people).
They made clear that an ability to respond emotionally should not be conflated with a cognitive capacity to understand, retain and weigh up information about a medical decision.
On the face of it family members were not arguing that AH had the capacity to make the decision about continuing mechanical ventilation. They were simply informing the court of her current wishes and feelings as they understood them on the basis of their prior and current knowledge of her.
Counsel for the family was clear in his opening position statement that they were not disputing the clinical view that she “lacks capacity” in relation to the decision to be made by the court. However, at times this seemed quite ambiguous in individual family members’ testimonies or in their response to questioning.
In part this was implied in the way family members challenged the formal clinical assessment of what AH could or could not understand and communicate, and when they made clear statements about what AH now thought and had somehow been able to make understood by her family e.g. “She’s grasped what’s happened to her: she’s accepted it” (Daughter S).
Most importantly family members repeatedly informed the court that they had asked their mother what she wanted in her situation and she had indicated that she did not want to die.
Clinicians stated that they did not feel it was appropriate for them to seek AH’s views on treatment decisions, as she lacked the cognitive capacity to respond in a way that could usefully inform (let alone determine) the decision.
The family took a different view and had frequently asked their mother what she wanted to happen next, and were frustrated and upset by the apparent lack of respect for what they consistently heard from their mother. The way in which her children presented the question and understood the answer from their mother was unpacked in questioning,
AH’s oldest son “A”, for example, commented as follows:
Son A: My only interest is to give my mum what she wants. So I thought I would crack the question – “Do you want to be put at end of life, palliative care?” [ …] “Mum, doctors and nurses want to put you at end-of-life care, is this what you want?” – and you can see her [shakes head]. Every time we ask her the same questions: “Do you want to return to Allah? Do you want to continue?” Every time without fail [shakes head]…[They say] “sorry but your mum doesn’t understand the question”. What do we do? It’s like banging your head against a brick wall” .
Gollop: Do you consider that your mother has the capacity to make a decision about whether ventilation should continue? A:I personally believe that if you ask her that question, she’ll give you the answer.
This was echoed in the response of other family members, all of whom felt that AH had indicated a clear desire to live and had ‘capacity’ to answer the question about ventilation (although it was unclear whether they felt she had ‘capacity’ in the sense of understanding her true clinical situation).
Gollop:Does your mother have capacity to make decision about whether or not her ventilation should continue?
Daughter S: Yes, if you ask my mum she will give you her answer.
Gollop: Do you think she has capacity?
S: Yes I do, I do think she has the capacity […]
Gollop: You think she understands what is going on around her and she understands what her condition is like, and what it will mean to be ventilated for the rest of her life?
S:Yes, I know my mum’s aware.
G: Your belief is that she chooses to continue to be ventilated?
S:I don’t think anyone chooses to be ventilated, I think my mum wants a chance to get better.
G:Every single doctor says there is no chance of improvement – do you reject that evidence.
S: No, but I know my mum doesn’t want to go onto palliative care.
Questioning in court tried to tease out whether the children themselves were able to address the risks that the experts believed faced their mother – not a choice between dying and living, but a choice about how she would die. Her children were very honest in their responses: this was not a question they felt they could answer. In questioning “S’ for example, the following exchange occurred:
Judge: The medical evidence is that your mother is not going to be able to come off the ventilator. What do you think her views would be if that were the position?
Daughter S:That is a hard question, because our mum has told us to not give up on her, and she’s told us to keep going, so I can’t answer that question for us. All I know is our mum…everything is about doing what our mum would want. Saying “yeah, she would want you to switch off the machine” – that’s not us fighting for her.
Similar issues were explored with AH’s son, “A’:
Gollop: Have you read Dr Danbury’s report? There is a high risk ofsudden unexpected death without her family there. A very high risk of dying alone. Passing away alone without people around her praying for her…
Son A: you can’t guarantee that…you just don’t know
Gollop:…The choices are continuation or withdrawal of mechanical intervention (in the hospital). One allows her to die with the people she loves around her, praying for her and the other puts her at a very high risk of dying alone.
After A indicated that he couldn’t really engage with that question, the judge intervened.
Judge: I’m going to have to face the reality. On one view of the evidence there’s a strong likelihood that will happen, so I think what you have to think about – if you want to – is what Ms Gollop is saying: that part of the component decision is to think what is in your mother’s best interests.
Son A: I wish I asked her this.
And being gently pushed a little further by the judge to try to provide an answer himself, he added
“It’s like saying would you rather be hit by a bus or would you rather drown – you don’t want either of them”.
He subsequently became tearful saying:
“I would give up everything I have to look after my mum… What is the point in being a son if you’re not going to be one.” (Son A)
It was at this point that Katie Gollop QC underlined that the Court of Protection was there to ask and answer the question that the family were finding so difficult to address. The court, she said:
“..can take the burden of responsibility away from those who feel it so weightily and pass it to a judge. The hospital would never wish anybody who has the grace to participate in this process to feel that they are responsible in any way for the outcome.”
The judge underlined this point, the family love for AH was clear, she said, “that shines through”. There is no criticism of anything family has said or not said. The outcome is the responsibility of the court
Judge: “It’s entirely my decision”.
It was hoped that the decision would be ready to hand down on the afternoon of Monday 13th December 2021.
[1]Polly had a ‘traumatic’ brain injury which has a different prognosis than AH’s type of injury. She was also much less physically compromised than AH and displayed (to me) a much higher level of distress than this family report. Polly left intensive care within weeks to move through high dependency, rehabilitation and into the long-term care system, emerging from MCS after two years. She has profound neurological deficits, still requires 24/7 care and lacks capacity to make decisions about any medical treatments.
[2]In my experience, it is easier to see the extent of a brain damaged individual’s lack of capacity to make particular decisions once they are more recovered and a relatively clear and consistent ‘yes’/’no’ communication is established. It is then that hope, deduction, facilitation or ventriloquism become less a part of the interaction process and gaps in understanding, processing, weighing or recall may become more starkly evident. It may also, however, at that point, seem to be possible to confirm earlier interpretations.
This hearing (COP 1385977T), heard over Microsoft Teams before Mr Justice Moor in the Royal Courts of Justice on Thursday 9th December 2021, concerned whether an elective caesarean was in the best interests of a heavily pregnant, non-capacitous young woman (MP) who was detained in a hospital in the North of England under the Mental Health Act 1983, s3.
The outcome, consistent with three clinical reports and MP’s own wishes, was that an elective caesarean was in MP’s best interests and an order was made to that effect.
Factual background
In a short introduction at the beginning of the hearing, Counsel for the applicant trust outlined the case.
MP is in her twenties, and in her thirty-seventh week of her first pregnancy.
She has no history of previous mental illness but has recently developed acute mania, psychosis, aggression and lack of insight. For this reason, she was detained in a psychiatric hospital in a city in the north of England under the Mental Health Act 1983, s3. Although MP has improved somewhat since admission, she remains unwell.
MP also suffers from gestational diabetes. This has caused her unborn child to grow very large (in the 97thpercentile).
Against this background, there have been several discussions about how MP should deliver her baby. Two consultant clinicians have agreed that MP lacks capacity to decide on mode of delivery, and further agree that an elective caesarean is in her best interests. This is because, given the large size of the baby, a caesarean of some sort would likely be required, and an elective caesarean is preferable to an emergency one because attendant on the latter are heightened risks of maternal haemorrhage and mortality.
The hospital’s Clinical Director and Lead for Obstetrics further recommended that it was in MP’s best interests to undergo this caesarean under a spinal anaesthetic (a ‘spinal block’) as opposed to a general anaesthetic. A spinal anaesthetic, which is administered by injecting drugs into the subarachnoid space near the spinal cord, allows the patient to remain awake during the caesarean. Such consciousness is preferable to the unconsciousness induced by a general anaesthetic because it minimises risks of maternal vomiting and infant drowsiness, and enables the mother to see and feed her baby sooner.
Both MP and the father of her baby initially desired a natural (vaginal) birth. However, on being told that clinicians felt she should undergo an elective caesarean with a spinal block, MP (and now the father too) adopted the same view. Accordingly, the application before the court was rather straightforward: for the court to make the order sought by the applicant NHS Trusts, permitting them to perform a caesarean under spinal anaesthetic, with permission to give her a general anaesthetic if necessary (or if she requests it).
The hearing
The start of the hearing was delayed by about 15 minutes due to difficulties with getting everyone logged on and (in particular) sorting out the arrangements for the interpreter and MP’s partner, the father of her child, who was joining the hearing as a litigant in person.
The two NHS trusts were represented by Ian Brownhill (for the hospital that would deliver MP’s baby) and Fiona Paterson (for the trust responsible for MP’s mental health care).
MP herself was represented (via the Official Solicitor) by Andrew Hockton.
Witness evidence
There were several members of the Trusts in attendance and ready to give evidence at the beginning of the hearing. However, and with the consent of all parties, the judge released them all except one – the hospital’s Clinical Director and Lead for Obstetrics (Dr A).
Counsel for the hospital Trust opened the evidence-in-chief by asking Dr A why a caesarean was recommended. However, as the judge pointed out, this evidence was already in the witness statement, which he had read and accepted. In light of that, counsel for the hospital Trust had no further questions.
Counsel for MP via the Official Solicitor briefly cross-examined Dr A on various matters. These included whether she herself would be administering the spinal block to MP (she would not: she wouldn’t be available on the day), the circumstances in which administration of a general anaesthetic may become necessary (if MP became anxious or distressed during birth; if the spinal block did not work; or if MP requested it) and how MP’s anxiety would be assessed during birth (physically and clinically, taking account of MP’s demeanour).
The judge briefly intervened, asking whether a spinal block was the same as an epidural. Dr A replied that they were not quite, although the two are often conflated. (An NHS leaflet explains the difference.) With that, her evidence concluded.
Moor J then asked whether MP’s partner had any questions or comments. MP’s partner responded that, despite originally favouring a natural birth, he now supported the clinical recommendation that MP undergo an elective caesarean facilitated by a spinal anaesthetic. The judge received this warmly.
Participation of MP
There was then a short break. Observers and other parties were asked to leave the video-platform so that Moor J could hear from MP herself, whowas listening from her hospital bed with clinical staff in attendance.
The judge had agreed to meet with MP despite saying at the outset that he was “slightly uncertain as to the purpose of the meeting”. He pointed out that what she said could not be “evidence”. Counsel for the Trust said “I don’t propose you gather any evidence from her, but listen to her wishes and feelings”.
This exchange has its origins in the recent Court of Appeal case, Re AH[2021] EWCA Civ 1798 – also blogged about here: “A life-sustaining treatment decision from Hayden J in the Court of Appeal”and “The most complex covid patient in the world”). In Re AH, a family succeeded in their appeal against a decision by Mr Justice Hayden, Vice President of the Court of Protection, on grounds of procedural irregularity, because Hayden J had visited the patient at the centre of the case and one possible interpretation of what happened is that he treated what transpired at that visit as evidence in coming to his decision.
Against this background, and over a period of some 10-15 minutes, Moor J visited with MP (without observers present) and reported back to the court.
The judge reported that MP was in “extremely good spirits”, and had been “smiling and waving” at him throughout their conversation. She had spoken to him in English. Moor J was not convinced that MP knew quite who he was, or what his role was, but appeared to have rather enjoyed the exchange. The judge recounted that MP expressed her wishes to have a caesarean section, to be awake throughout it, and her hope that her child – a boy – would one day grow up to be a policeman. Smiles tugged at the mouths of all those visible on screen.
Final submissions
At final submissions, two additional issues arose.
1. Further hearings
First, whether further court hearings should be arranged to pursue other matters in this case. Counsel for the hospital NHS Trust was anxious that MP’s mental health could remain poor or further deteriorate post-partem, necessitating further court best interests decisions. He therefore submitted that arranging a hearing, for some time in the future, would usefully enable the court to deal with any issues arising in the train of this hearing, rather than requiring a fresh application where factual matters would have to be submitted anew.
Moor J was not receptive. Stressing with some force that “we are absolutely overwhelmed with work”, the judge declined to list any further hearings to deal with speculative issues, asserting that “this is a self-contained application”. If there was any further need to come to court, he said, an application could be made at that stage and not before. He was “hopeful that MH’s problems will resolve themselves and this court will have no further jurisdiction”. However, on the suggestion of counsel for the second NHS Trust, Moor J ordered that whilst this was a final hearing, he would ‘grant liberty to come back’ to the court in his final order. This would allow any such issues to be resolved within the structure of the instant hearing, but would avoid listing a hearing unnecessarily.
2. Dealing with delay
Second, counsel for MP via the Official Solicitor raised a concern with “delay in this case”, saying that it ought to have been before the court in November. The judge made clear his view that delays in such cases were not at all unusual.
Court guidance concerning applications for court-sanctioned interventions in childbirth has been in place since Mr Justice Keehan’s judgment in NHS Trust & Ors v FG[2014] EWCOP 30, which has an Annex specifying the procedures to be followed, including that applications should be made “at the earliest opportunity” and “no later than 4 weeks before the expected date of delivery”. Keehan J specifies the reasons for this time frame, saying that “this approach is dictated by P’s Article 5, 6 and 8 rights and best interests”.
Despite this guidance, it’s common for cases to come before the court (as here) where women are within 4 weeks of their expected delivery, and judges regularly express concern that they are having to make decisions about childbirth for women close to (or even after) their due dates. In GSTT & SLAM v R [2020] EWCOP 4, Hayden J was making a decision concerning a woman who was 39 weeks and 6 days into her pregnancy. The judge characterised the delay as “avoidable” and “deprecate[d]” the delay in bringing the case – although in fact it seems it had only become clear 10 days earlier that a problem had arisen because P had stopped taking her anti-psychotic medication.
In the instant case, Moor J commented on the causes of such delay, noting: “It’s the good nature of clinicians. They believe they’ll be able to sort it out and then at the very last minute they realise they can’t”.
In response, counsel for the second NHS Trust (Fiona Paterson) wondered whether it would be appropriate for the President or Vice President of the Court of Protection to write to the Royal College of Obstetricians and Gynaecologists (RCOG) about the pattern. “As counsel we see this more often than we would hope”, she reflected. The judge said he would raise the matter with Mr Justice Hayden, whose office (he said) was within easy walking distance of his own.
In sum, it was clear that there was agreement between counsel that it was in MP’s best interests to receive an elective caesarean, facilitated by a spinal anaesthetic, with administration of general anaesthetic possible if strictly necessary. Moor J was invited to make this order.
Judgment
The judge summarised the applicable law. Little in that summary would surprise readers of this blog: capacity, which is decision-specific, is assumed unless established otherwise on the balanced of probabilities (see Mental Capacity Act [MCA] 2005, s1(2)). Nobody is to be treated as without capacity unless all practicable steps have been taken to assist them without success (MCA, s1(3)). A person is not to be treated as unable to make a decision merely because he makes an unwise decision (MCA, s1(4)). If lack of capacity is established, the person must be treated in accordance with what is in their best interests (ibid, s1(5)).
Against this background, Moor J was entirely satisfied, based on evidence about MP’s psychiatric state and her inability to understand, retain and weigh the relevant information, that she lacked capacity to make decisions about the birth. He was similarly satisfied that an elective caesarean, performed under a spinal anaesthetic, was in MP’s best interests, in large part due to the size of the baby and the risk of shoulder dystocia. The evidence was cited to support this. An elective caesarean under spinal anaesthetic is also what MP wants for herself, and her partner also (now) supports this. Moor J also ordered that a general anaesthetic may be administered but only if it became ‘strictly necessary’, for example through failure of the spinal anaesthetic, or MP experiencing undue pain or anxiety.
Reflections
At first sight, this may seem an uneventful hearing. There was no dispute about what was in the person’s best interests, nor was there any divergence between what she herself desired and what was determined to be in her best interests. The hearing ran smoothly and concluded warmly, with Moor J sending MP “the very best for a successful delivery”.
The hearing was an excellent example of how this non-adversarial court works collaboratively and inquisitorially to arrive at the best possible outcome for MP.
I learned several matters from observing this hearing:
The Court of Protection is presently working under great pressure. Even hearings which, like the instant case, concern seriously invasive medical procedures on the bodies of non-capacitous vulnerable persons, are arriving as urgent and late applications.
When handling such matters, the court must delicately balance patients’ Article 8 rights to privacy with the public’s Article 10 rights to freedom of expression. Indeed, in the instant case Professor Celia Kitzinger intervened to query whether anonymising the applicant NHS Trusts was appropriate, given the court’s commitment to transparency, and the possibility that disclosure permits recurrently defaulting NHS Trusts to be identified. Professor Kitzinger gave as an example the successful application of journalists (Louise Tickle and Brian Farmer) to name Haringey in reporting Family Court proceedings (as reported by The Transparency Project) – while also acknowledging that this is a very different case. Moor J, observing that the intervention was made “absolutely properly”, agreed that there is “a need for as much transparency as possible”, but upheld anonymisation of the public body in this case in order to absolutely minimise any risk of MP’s ‘jigsaw identification’ (i.e. enabling her identification through publishing a range of different facts about her). It was impressive to observe the courtesy and respect with which this matter was handled, especially in a hearing of such urgency.
Finally, observing the hearing was valuable for my ongoing legal education. Whilst I have studied medical law for some time, this was the first ‘best interests’ hearing I have ever observed. Observing it, and writing this blog with Professor Kitzinger’s assistance, has enriched my understanding of the decision-making process tremendously. What’s more, as an advocate-in-training myself, it is tremendously valuable to observe advocacy of such high-quality. I was struck by the articulacy and care with which all advocates assisted the court. These insights will no doubt uplift my own advocacy style, for which I (and my advocacy tutors!) can only be thankful as Bar exams creep closer.
I am grateful to all participants in the hearing, and to Professor Kitzinger for her support with this blog post, especially as regards the significance of Moor J’s conversation with MP.
By Jenny Kitzinger and Celia Kitzinger, 10th December 2021
UPDATE 13th December 2021: At this hearing it was stated – and we reported – that the patient was in a “prolonged disorder of consciousness” . In fact, (blog to follow) it transpired that was NOT the case. She has a brain injury but is NOT in a prolonged disorder of consciousness.
Life-sustaining treatment has been withdrawn from a woman in her late 70s, described as being in a prolonged disorder of consciousness.
The naso-gastric tube that was placed on or about 23rd October 2021, which provided her with nutrition, was removed about four weeks ago. She is receiving only hydration (with dextrose and saline) via an IV line.
Her son and daughter have opposed withdrawal of the feeding tube from the moment they were told about it.
The case was heard for the first time in the Court of Protection on the urgent hearings list before Mrs Justice Arbuthnot on Thursday 9th December 2021. We understand that the application was filed the day before (on the evening of 8thDecember 2021). The hearing started shortly after 3.30pm the following day. This shows the speed and efficiency with which urgent cases can be addressed by the court.
The application was brought by the patient’s son, represented by Katie Gollop QC
The person at the centre of the case (Mrs W) was represented by Conrad Hallin, via the Official Solicitor.
The Trust (London North West University Healthcare NHS Trust) was represented by Eloise Power.
Due to the urgency with which this case was heard, only the applicant had prepared a written position statement. Counsel for the Trust said she’d only received her first instruction at 12.45pm, less than three hours before the hearing began.
Facts of the case
Counsel for the applicant summarised what is known of the facts so far.
The patient’s son and daughter had been asked to agree to the insertion of the naso-gastric tube (on about 23rd October 2021) but had not been consulted about its removal. They say they’d not been told about the removal of the tube in advance, or asked what their mother would want.
The son and daughter are people who in the words of the Mental Capacity Act 2005 (s. 4(7)(b)) are ‘engaged in caring for the person or interested in his welfare” and as such their views about what the person would want, and what is in their best interests, must be “taken into account if it is practicable and appropriate to consult them”.
They say that they were informed on 11th November 2021 that the naso-gastric tube had been removed by the hospital. They informed the Trust that they objected to the removal of the tube and asked that it be reinserted. They were told that the Trust would obtain a second opinion – but no written opinion has been provided to them.
On 12th November they sent an email to the Trust stating their objections to removal of the naso-gastric tube. They reminded the Trust that they hold a health and welfare Lasting Power of Attorney and requested a meeting and information.
They reiterated that concern about the Trust’s decision to withdraw nutrition on 15th November (again in writing) and had a meeting with doctors on 23rd November at which they were told that the tube would not be reinserted and that life-expectancy was a matter of days.
On 25th November they had a second meeting with doctors and were told that other treatments had also been withdrawn and that a DNACPR (Do Not Attempt Cardio-Pulmonary Resuscitation) notice had been in place at least since October 2021.
At a further meeting on 7th December, no agreement was reached about artificial nutrition. The Trust’s position was that they would not provide it. Mrs W’s attorneys stated clearly that withholding this treatment was against their mother’s wishes and not in her best interests and that they objected to it – and also that the DNACPR was contrary to their mother’s wishes.
Lasting Power of Attorney
The patient’s son and daughter are not simply ‘family members’ (or ‘next of kin’). They are her health and welfare attorneys.
Contrary to popular belief, family members and next of kin do not have decision-making rights in relation to an incapacitated person’s medical treatments. Doctors should consult them, but decision-making responsibility lies with those professionals responsible for delivering treatment, or with overall responsibility for a person’s care.
But in this case, Mrs W had specifically appointed her son and daughter as her joint health and welfare attorneys. This means they are the people she gave the legal right to make decisions about her health and welfare. They cannot, of course, determine what treatment she is given, but they can consent, or refuse to consent, to what is offered.
The Office of the Public Guardian (OPG) has published a guide to making and registering power of attorney (click here). It tells people:
“An LPA is a legal document that lets you (the ‘donor’) choose trusted people (‘attorneys’) to make financial decisions or health and care decisions on your behalf.”
It explains that attorneys can only make decisions for you when you don’t have mental capacity and continues:
“One very important decision has its own section in a health and care LPA. You can choose whether your attorneys or your doctors should make decisions about accepting or refusing medical treatment to keep you alive, if you can’t make or understand that decision yourself.”
There’s a whole section dealing with life sustaining treatment in the OPG guide. Here are three short extracts:
You have two options:
option A – I give my attorneys authority to give or refuse
consent to life-sustaining treatment on my behalf
option B – I do not give my attorneys authority to give or refuse
consent to life-sustaining treatment on my behalf
Sign only one option.
Life-sustaining treatment: definition
‘Life-sustaining treatment’ means care, surgery, medicine or other help from doctors that’s needed to keep someone alive.
Life-sustaining treatment can include:
a serious operation, such as heart bypass surgery
chemotherapy, radiotherapy or another cancer treatment
an organ transplant
artificial nutrition or hydration (food or water given other than by mouth)
You can write instructions in section 7 of the LPA form to specify medical conditions where your attorneys must or must not consent to life-sustaining treatment on your behalf.
In this case, Mrs W had signed the box to say that she did give her attorneys authority to give or refuse consent to life-sustaining treatment (including clinically assisted nutrition and hydration) and she had written as follows:
“I want to live and you must fight to help me live. As a Christian, my faith is very important to me…”
The documentation for Mrs W’s Lasting Power of Attorney was before the court. It had been registered with the OPG on 18thJanuary 2020 and nobody raised concerns about its validity.
This means that – up to the point at which the matter came before the court – it was the son and daughter, as the jointly appointed health and welfare attorneys, who were the nominated “decision-makers”.
It was up to the attorneys to make decisions in Mrs W’s best interests as to whether or not life-sustaining treatments that clinicians are willing to make available to Mrs W are consented to or refused.
The law on withdrawing treatment from PDOC patients
Since the Supreme Court case of An NHS Trust v Y and another[2018] UKSC 46, it is not mandatory to bring cases to court before withdrawing clinically assisted nutrition or hydration from patients in prolonged disorders of consciousness (PDOC), if certain safeguards are followed.
These safeguards include proper compliance with professional guidance and a second opinion from a senior independent clinician. When it is apparent that there is “a lack of agreement to a proposed course of action from those with an interest in the patient’s welfare, a court application can and should be made”.
In this case, it appears that no second opinion had been obtained (or at least the family do not know of it).
The family say that communication with the Trust is extremely difficult. They don’t feel they’re being provided with the information they need or are entitled to. They don’t feel consulted or properly involved in the decision-making process.
They feel strongly that as the Trust knew there was a lack of agreement between the attorneys and the clinicians as to P’s best interests in relation to continuing clinically assisted nutrition, the Trust should have brought the dispute to court.
The applicant’s position (Katie Gollop QC)
Counsel for the son asked the court to “hold the ring” by making an interim declaration that it is lawful and in Mrs W’s best interests for her to be provided with nutrition and hydration and all other medical treatment necessary to life. The son also wanted the DNACPR removed (again on an interim basis), disclosure of medical records, and an independent second opinion from an expert.
The Trust’s position (Eloise Power)
Counsel for the Trust had been instructed to offer “a sincere apology in open court to Mrs W and to her family”. She apologised first that the views of the family members/attorneys “were not fully elicited prior to removal of the naso-gastric tube” and second “that an application to the Court of Protection was not made”.
She said that reinsertion of the naso-gastric tube might seem “at first blush” the “obvious” solution – but that reinsertion now “carries some significant risks” (such as aspiration). She asked for medical evidence to be sought as soon as possible as to the benefits and burdens of naso-gastric feeding “before intervention which could lead to the immediate death of Mrs W”.
The judge said, “I am most dismayed by the poor communication that there has been between the hospital and Mrs W’s children. I will in due course need a full explanation of what has gone on in relation to that. I say no more than that now.” Counsel for the Trust agreed that “this is an aspect of the case that merits full disclosure”.
Finally, she said that clinicians are not willing to perform cardiopulmonary resuscitation on Mrs W “and so this is not a measure for an interim declaration”. We assume she meant by this that CPR is not a treatment that would be clinically indicated for Mrs W, because the court cannot order doctors to give treatments that they consider clinically inappropriate.
The Official Solicitor’s position (Conrad Hallin)
Counsel for the OS sounded frustrated at the lack of information available in this case and said “we are largely in the dark as to the circumstances on the ground”. He raised the question as to Mrs W’s diagnosis and prognosis. He was concerned that the issue of feeding wasn’t straightforward “as we don’t know how long she may survive without nutrition. We don’t know what the extent of the [risk of] aspiration is if the naso-gastric tube is reinserted.”
He pointed out that there is a question mark as to whether or not the DNACPR order falls within the remit of the Court of Protection depending on the basis on which it’s imposed – but in any event there is a duty to consult family, following Tracey “and that doesn’t appear to have been done, which is obviously very disappointing”. He conceded that “it may not be a best interests decision if CPR is not clinically indicated, but I want clarity on that”.
Moving forward?
Counsel for the applicant said she wanted to say one thing about the past before moving on to consider future actions.
She said it was “astonishing and deeply troubling that for four weeks until today, a patient in this country in 2021 has been deprived of nutrition without their nearest and dearest being consulted. This calls for a Serious Untoward Incident investigation…. If Mrs W had died in the last four weeks, the family would have been looking at an inquest with the potential of an investigation for manslaughter. This should never have happened.”
Katie Gollop QC then reported an email from her instructing solicitor which identified a doctor within the Trust who had very recently (presumably in response to this court action?) completed an assessment of Mrs W and read some of Mrs W’s medical records. She also reported that an independent expert, Dr Chris Danbury, Consultant in Anaesthetics and Intensive Care could be available next week to provide an independent expert report – but not until Tuesday. She pointed out that he was eminently qualified to be an expert in this case as he had been a member of the core group that authored the Guidelines on “Clinically Assisted Nutrition and Hydration (CANH) and Adults who lack the capacity to consent” (produced by the British Medical Association and the Royal College of Physicians and endorsed by the General Medical Council).
The judge suggested a break of 45 minutes (it actually extended to nearly two hours) to discuss the way forward.
On return to court (now close to 6pm), it was reported that Dr Danbury was able to rearrange his appointments and provide the report on Monday morning – on condition he receives all the medical records, including imaging, tomorrow (i.e. Friday).
The Trust, however, had not been sure he was the right expert because “he’s an intensivist. She’s being treated by geriatricians and we would prefer the discipline of expertise to be the same as the treating clinicians”. On checking her emails during the course of the hearing, however, she returned to this matter “with trepidation” because “none of the experts whose names have been suggested by the Trust are available, so I’m in the unpalatable position of not being able to offer you the name of a geriatrician on a plate”.
Given that Dr Danbury was seen by the other parties as “an extremely good expert” and was “heartily recommended” by Counsel for the Official Solicitor, the judge approved Dr Danbury as expert without delay. The plan is that he produces his report by 10am on Monday morning so that the hearing (a directions hearing) can take place on Monday afternoon (listed for “not before 2pm”).
Counsel for the son asked the Trust to take over as applicant “so the family can concentrate on being family” (the Trust was “amenable” to that), and to pay the family’s costs, given the “close to unprecedented circumstances of this case”. The judge was nodding at this.
The judge stated, firmly: “I’m afraid they brought it upon themselves by this behaviour. That’s what happens when communication breaks down. And that’s putting it politely”.
She ended the hearing (just before 6.30pm) by sending her best wishes to the family.
Reflections
There are several questions raised by this case raises that may be clarified on Monday.
The first is the nature of the decision. It was unclear to us, and indeed to the Official Solicitor, whether the decisions about this patient are ‘best interests’ decisions or whether, quite simply, treatments such as CANH and CPR are no longer on offer – and so not available as options for the attorneys to consent to or to refuse.
The second is the question of the clinical care put into assessing this patient – one issue raised in the hearing was whether reversable causes of her condition had been adequately addressed.
The third issue, not yet explored, is the guidelines that would apply for this patient. The Guidance on CANH (of which Dr Danbury was one of the authors) does not cover patients for whom CANH is not clinically indicated, patients expected to die within hours or days, or patients for whom a decision to stop CANH is part of a broader decision about life-sustaining treatment. The case of Re Y (referenced in court) concerned a sudden-onset brain injury and PDOC in a previously capacitous and healthy patient, and the guidance was largely drawn up in response to that case. For such patients the appropriate guidance is laid out in Part 2, Chapter 5 of the Guidance. The Guidance offers different recommendations for patients in PDOC with neuro-degenerative conditions (Part 2, Chapter 3) and those who have co-morbidities or frailties likely to shorten life expectancy, along with PDOC following brain injury (Part 2, Chapter 4). We simply didn’t have medical information about MW’s condition to know which part of the Guidance should be consulted in her case.
Regardless of the answer to the issues outlined above it was clear those in court were very troubled by what seems to have been very poor communication.There appears to have been a failure to consult with, or even inform, Mrs W’s family, of certain decisions (eg DNACPR for example or CANH withdrawal).The Trust’s offer to make documents about family meetings available and to conduct their own review may bring clarity to this issue.
Most fundamentally, however, and what is most troubling about this case for both of us, is an apparent disregard for the fact that the patient has a son and daughter who she designated as her health and welfare attorneys. She assigned them authority over consenting or refusing consent to life-sustaining decisions, and backed this up with a statement of preferences (or instruction) on the form appointing them.
If life-sustaining treatments were on offer, then the decision-makers were the son and daughter, NOT the clinicians – and it was up to them to make the decision as to whether it was in her best interests to continue with CANH or not.
For us this is a key point. We are sisters who work in the area of prolonged disorders of consciousness because our sister, Polly Kitzinger, suffered a catastrophic brain injury, following which doctors refused repeatedly over months and years to listen to and take seriously family views of what Polly would have wanted in this situation (see “Doctors wouldn’t let my sister die”).
Following that experience, both of us (Celia and Jenny), our two other sisters, parents, partners and many of our friends have appointed people we trust as our health and welfare attorneys (and we’ve also written Advance Decisions and Advance Statements). We did this because we wanted to give best interests decision-making authority (on issues not covered by our Advance Decisions) to someone who knows us and whom we trust to represent our wishes. It’s dismaying to consider that medical professionals might simply ignore our health and welfare attorneys.
Drawing up and processing such paperwork takes considerable forethought and effort (and a Lasting Power of Attorney incurs a registration fee). In our family, we felt compelled to do this because we wanted to be sure that what doctors did to Polly could not be done to any of us – where the routines of hospitals, assumptions of clinical teams, and indeed, the way the law operated at the time, meant Polly’s own wishes and values were over-ruled.
In the case of the woman in this urgent hearing, it seems clear from the quoted wording on her form that she appointed her children as health and welfare attorneys to try to ensure that her strong religious perspective and ‘pro-life’ views would be taken into account. Presumably she believes that the children she chose as her attorneys will understand her perspective better than her doctors, and will be able to act in accordance with that. And yet the role she assigned to them, in a legal document, has apparently been ignored.
There’s a proviso here. It’s possible that clinicians are no longer willing to offer CANH because they consider it clinically counter-indicated. That would mean that it’s not an available treatment to which the attorneys can give consent. The attorneys cannot determine what treatments she is given: they can only consent, or refuse to consent, to what is offered. It was very unclear in court whether or not CANH was, or is, in fact a clinical option for this patient – and so equally unclear as whether or not a best interests decision by the court was possible now, or whether a best interests decision had been possible previously for the attorneys. Either way, the attorneys should undoubtedly have been consulted and informed about their mother’s treatment.
Decision-making responsibility about Mrs W’s best interests has now passed from her attorneys (who seem to have been prevented from exercising it) to the court.
We will be following the case on Monday 13th December 2021 with interest.
Promoting Open Justice in the Court of Protection 