Urgency, delayed decision-making and ethics in the Court of Protection

By Dominic Wilkinson, 24th June 2021

On 11th June 2021,  I was a public observer (via MS Teams) of a case in the Court of Protection: Case No. 1375980T Re GU (also blogged about by Jenny Kitzinger here).

The case was (though I did not know it beforehand) related closely to issues that I have written about over a number of years (for example hereherehere ). It was an urgent hearing before Mr Justice Hayden concerning clinically-assisted nutrition and hydration (CANH) for a 70 year old man, GU, who has been in a prolonged disorder of consciousness for seven years.

I have read the judgments from many similar cases in the UK, from the first ever case concerning a feeding tube for a vegetative patient heard in (what is now) the Supreme Court in 1992 (the case of  Tony Bland, injured in the Hillsborough football stadium disaster), through to the most recent Supreme Court case of Re. Y, at which the court ruled that it is not mandatory to bring cases concerning CANH-withdrawal to court unless there is disagreement about best interests, or the decision is finely balanced (report here). I’m also familiar with the judgments in other jurisdictions (e.g. Schiavo in the USA,  Lambert in France) and have been involved in deliberation in clinical ethics committees about cases with similar features.

Yet, this was my first time hearing open deliberations in the Court of Protection. It was a fascinating and thought-provoking experience.

Background: The case of GU

Right at the start of the hearing, the court heard the moving and tragic story of the events leading up to this point.  Seven years previously, GU had been electrocuted while cleaning a pond in his home overseas. Dragged out of the water and rushed by car to a hospital some distance away, GU had suffered a cardiac arrest and severe hypoxic brain injury. He was repatriated to the UK, and has remained ever since in a specialised rehabilitation facility and nursing home.

GU has been stable for many years. His doctors agree that he remains in a permanent vegetative state and will not improve. Three years ago, after reading about the Re Y case, some of GU’s family expressed a view to his treating doctors that the treatment keeping him alive (clinically-assisted nutrition and hydration) should be withdrawn. However, the doctors were aware that one family member did not agree to this – which under the Re Y ruling would mean a mandatory court hearing. The hospital did not host a best interests meeting, and nor was any application to the court made.

Three years later, the Clinical Commissioning Group brought the case to the Court of Protection for an urgent hearing.

The central ethical issues in this case relate to two relatively familiar questions. First, is it in the best interests of a patient in a prolonged vegetative state to continue life-prolonging treatment (where there is evidence that they would not have wished to be maintained in such a state?)  Second, is it permissible to withdraw clinically-assisted nutrition and hydration, anticipating that the patient will die as a consequence? 

These ethical questions are settled in UK law as general principles. As they related to GU in particular,  the answers were reached relatively quickly:  no, it was not in his interests, yes it was permissible. But I will focus for most of this blog on a different issue, raised right at the start of the hearing, and recurring throughout.  Where such questions arise for a patient in a prolonged disorder of consciousness, is it urgent that they are heard and decisions reached by the court, and if so, why? 

Urgency

At the start of this hearing Mr Justice Hayden noted that he was hearing the case on the urgent and emergency applications list. There is usually a relatively long wait for cases to be heard in the Court of Protection, often a matter of several months. But it is possible to apply for an emergency order if “it is a serious matter with an unavoidable time limit”. For example, that can relate to urgent life and death decisions. On the morning of the first day, Mr Justice Hayden indicated that the circumstances were so urgent that not only did he plan to hear the case on the emergency list as a ‘final’ hearing and not simply as a ‘directions’ hearing (as it was listed), but he would, if possible, aim to reach a conclusion on the same day. (In the event, he delivered his judgment the next day.)

One of reasons given for aiming for a speedy determination of the issues was the impression that there had been undue delay at a prior stage in applying for a court determination of GU’s best interests. There was a strong suggestion by one of the expert witnesses, Professor Wade, that “there had been an inordinate delay” and that there  should have been an application to the court three years earlier. In fact, it seemed that the lack of appropriate urgency at an earlier stage was a significant factor in the perceived urgency of reaching a decision now. Mr Justice Hayden noted that “one day more is one day too many”.

One reason that some might be puzzled by the urgent nature of the hearing is that GU’s clinical state is completely static. His condition this month is the same as a month ago, as six months ago, as two years ago. Not only that, but given GU’s diagnosis of the most severe form of prolonged disorder of consciousness, there was little or no suspicion that he was perceiving any pain or discomfort (though this could also not be ruled out). 

At the start of the hearing, Mr Justice Hayden remarked that “It is sometimes implied that if a patient is in a vegetative state (rather than some higher level of consciousness) it does not matter if there is a delay”. However, he rejected that view. Speaking to the brother and son of GU (who had different views about GU’s treatment), Mr Justice Hayden was keen to separate the question of the urgency of the decision from the actual decision itself. He suggested that whatever decision was reached by the court, whether to continue or to discontinue treatment, it was in GU’s best interests to reach that decision urgently.  

It is relatively obvious why that might be the case if treatment were not in GU’s interests. It could be a harm to GU to prolong his life. Moreover, that harm could be aggravated by delay. 

But on the other hand, if it is in GU’s interests that treatment continue, it does not seem in any way urgent (for GU’s sake) to formally reach a best interests decision that confirms that. After all, in that case nothing about GU’s treatment would change.

So, one concern might be that perceived urgency in cases like this is not independent of the conclusion. Where there are different views, potentially only one side has reason to have the case heard urgently. (Indeed, in some situations those parties who are advocating continued treatment may have reason to want the case to be delayed, in case the decision goes against them (this did not appear to particularly apply to GU)).

There are, however, two ‘independent’ or neutral reasons in favour of urgency. We can apply these reasons without having to (or before having to) take a side in the dispute about treatment.

One reason is in terms of an asymmetry of harms. As noted above, if treatment should be stopped, delay is a harm. If treatment should not be stopped, an early decision is not a harm. Because of that, the least harmful approach is to aim for earlier decisions if possible. (One important practical consideration is that there can be greater uncertainty early after an acute brain injury. Sufficient time may need to have passed in order to assess whether the patient will improve and to gather information to be confident of their clinical state – for example the level of severity of their prolonged disorder of consciousness). That obviously did not apply to GU, since three years ago (and potentially as long ago as 6 years ago) ample time had passed since his original event.

The second independent reason is on the basis of family wellbeing, and the deleterious consequences of prolonged disagreement. In GU’s case, it was clear that the one dissenting family member (GU’s son) had found his relationship with the rest of the extended family seriously damaged as a result of their disagreement. Mr Justice Hayden was at pains to express a hope that reaching a best interests decision for GU would enable the rifts within the family to begin to heal. If we assume that in most cases patients will not want their family to be fighting, it would potentially be in a patient’s best interests to have any disagreements over their treatment resolved as quickly as possible.

Harm, dignity and autonomy

These two reasons suggest that it would be better to reach a decision sooner rather than later. That was the basis for Mr Justice Hayden’s concern about the delay in decision-making for GU. At one point, the expert witness expressed a view that the Hospital had chosen to “put their head in the sand” rather than confront the question of GU’s best interests and potential withdrawal of clinically-assisted nutrition and hydration. 

But as an ethicist, I was interested to hear some of the discussion about why it was bad for GU to have been treated with clinically-assisted nutrition and hydration for a prolonged period. 

One reason that was given was because it was possible that GU was suffering pain. There was some discussion about the evidence of awareness of pain in the vegetative state. The general consensus was that P was unlikely to be aware of pain or discomfort. However, this remained a small possibility.

An important reason cited was that continued treatment was contrary to GU’s autonomy. According to the Official Solicitor, there was “unanimity of evidence” that GU would not have wanted to be in this state, and as a consequence it was “an affront to his autonomy and dignity” to continue treatment.

As the previous quote indicates, it was further claimed that this was contrary to GU’s “dignity”. If treatment was not in GU’s interests and was merely prolonging GU’s death it was suggested by Mr Justice Hayden that “many would consider that a compromise of …[GU’s] dignity”.

Finally, it was suggested that a compromise of GU’s dignity constituted “a harm”. There was discussion in the hearing about the oft-cited principle of medical ethics “do no harm”, and therefore the implication that continued treatment of GU was contrary to this principle.

What was interesting about this discussion from an ethical point of view is that three different ethical concepts were referred to as grounding concern about prolonged (unwanted) treatment: “autonomy”, “dignity”, “harm”. They were cited as though the different words gave extra weight to the wrongness of what had been done to GU. This, and that, and this other thing. Three different reasons for concern. And yet it was not clear (to me) that they were referring to separate elements. Rather, they all seemed to be dependent on the single central ethical consideration – which was that GU would not have wanted to live in his current state.

Some of the deployment of these concepts appeared at times paradoxical. For example, there was recurrent suggestion that GU’s dignity had been compromised by the delay. And yet, Mr Justice Hayden was also at pains to note that GU’s general nursing and care at his long-term nursing facility had been of the highest quality. He said that GU “had been living in dignity”. So, was dignity preserved or not?

Ethics in the court of protection

One of the most interesting elements to me was the extent of the debate about primarily ethical questions in this hearing. There was in fact, relatively little discussion or debate about questions of law. That may have reflected the fact that this hearing did not raise any new questions of law, and the lawyers present (representing the clinical commissioning group and GU via the Official Solicitor) were in agreement. The disagreement was coming from one family member who was an ‘interested party’, but was unrepresented.

But to the extent that ethical questions and concepts were central to the hearing, it also seemed that there would have been value in having some specific ethical expertise available. Such expertise isn’t (primarily) about identifying the right answer to what should happen for the person at the centre of the case. Instead, it would draw on the skills that are relevant to clinical ethics in committees or on the wards: clarifying concepts, identifying and weighing relevant considerations and arguments, making important distinctions, deploying thought experiments, drawing on debate and academic literature. For example, a clinical ethicist in this case might have been able to identify the strength of the arguments relating to the urgency of obtaining a best interests determination in cases like that of GU. They might have drawn attention to the value of clarifying and distinguishing concepts like harm, autonomy and dignity. They would also have been able to provide some insight into the relevance of ‘do no harm’ in such cases. 

Academic and clinical ethicists, from the sidelines, have long debated questions relating to medical treatment for patients who are unable to decide for themselves. In England and Wales, they haven’t, or only extremely rarely, been called as expert witnesses. Yet ethics is obviously central to the work of the Court of Protection. And if this hearing is anything to go by, if judges or barristers were willing to call on them, it seems that there could be a place for an ethicist in the courtroom.

Dominic Wilkinson is a Consultant Neonatologist and Professor of Medical Ethics based at the Oxford Uehiro Centre for Practical Ethics  He tweets @Neonatalethics

Photo by Ahmad Dirini on Unsplash

Resolving End-of-Life Treatment Conflicts: Comparing the COP in England to Analogous Mechanisms in Ontario, California, and Texas

By Thaddeus Mason Pope, 23rd June 2021

On Friday June 11 2021, I had the pleasure of watching The Honorable Mr. Justice Hayden deliver judgment in a Court of Protection case involving the withdrawal of life-sustaining treatment. I have been reading Court of Protection judgments for years and have even collected many on my website. But this was my first opportunity to see and hear a senior COP judge. I am grateful to Celia Kitzinger both for helping to raise awareness of the publicly accessible nature of COP hearings and for informing me of this specific proceeding.

I am a law professor based in the United States, though I am presently the Fulbright Canada Research Chair in Health Law, Policy, and Ethics at the University of Ottawa. I have been writing and consulting on end-of-life treatment conflicts for over a decade. Therefore, I want to compare the Court of Protection to analogous dispute resolution mechanisms in Canada and the United States. 

All three mechanisms resolve the small subset of conflicts that are intractable to informal and intramural processes such as mediation and clinical ethics consultation. And while all three mechanisms adjudicate issues other than end-of-life treatment disputes, these may be the most consequential type of case. Below, I compare how each mechanism affords procedural due process in terms of (1) neutrality, (2) transparency, and (3) competence. 

Case No. 1375980T before Mr. Justice Hayden on 10th – 11th  June 2021

While emotionally fraught, the case at issue did not appear legally complicated. The patient, GU, was an incapacitated 70-year-old man. On 14th April 2014, the former pilot had suffered a catastrophic hypoxic brain injury after accidentally electrocuting himself in his garden pond. He has been completely unconscious and unable to interact with his environment ever since. No party disputed that the patient would not have wanted to live in this condition. None of his family believed that he would wish to continue to live in his current situation.  

The primary issue in this case concerned one specific form of life-sustaining treatment: clinically assisted nutrition and hydration (CANH). The patient’s wife, siblings and children all agreed that it is not in GU’s best interests to continue to provide him with CANH. But GU’s son disagreed. He did not want his father to die from dehydration. 

Mr. Justice Hayden ultimately sided with the brother and against the son, ruling that life-sustaining treatment was not in the patient’s best interests and should be withdrawn. But the judge did this only after thoroughly explaining and acknowledging the son’s perspective. Because the lawyers were transcribing his judgment, Mr. Justice Hayden spoke with the slow pace and distinct enunciation of former U.S. President Barak Obama. But this has the perhaps unintended effect of permitting public observers to follow easily. And Mr. Justice Hayden spoke directly to the patient’s son, demonstrating that he had carefully considered the son’s concerns.

Neutrality of Decision Maker

The central element of procedural due process is the independence and neutrality of the decision maker. It is unfair to have a conflict adjudicated by someone who either has a stake in the outcome or has a relationship with one of the parties. The Court of Protection earns top scores on this aspect of procedural due process. Mr. Justice Hayden, like all COP judges has no relationship with the patient, the patient’s family, or the hospital.

The key Canadian analog to the Court of Protection, the Consent and Capacity Board also scores well on this element of procedural due process. In Ontario, conflicts over life-sustaining treatment are often brought to the CCB, a specialized quasi-judicial administrative tribunal. Cases are heard by three member panels: a lawyer, a psychiatrist, and a public member. All members are independent from the parties.

In contrast to the COP and CCB, in California and Texas, intractable end-of-life treatment conflicts are typically adjudicated by hospital ethics committees or medical appropriateness review committees rather than by a court or quasi-judicial tribunal. Coincidentally, I participated as a voting member on such a committee on the same day that I observed the COP hearing. Most or all members of hospital ethics committees are employed by or otherwise affiliated with the same hospital that is treating the patient. These committee members are not neutral and independent. Indeed, a massive 150-page appellate decision recently challenged the legitimacy of these committees for this reason.

Transparency of Proceedings and Judgment

Like neutrality, transparency is a core element of procedural due process. The Court of Protection operates in an admirably open and transparent manner. First, the proceedings themselves are open to the public, and have regularly attracted Public Observers since the pandemic forced hearings to be held remotely (rather than solely in court buildings) and led to the forming of the Open Justice Court of Protection Project. Hearings before Mr. Justice Hayden are especially well attended by Observers. Second, Mr. Justice Hayden carefully, lucidly, and compassionately explained the reasons for his decision not only to the parties but also to the public observers. Third, Mr. Justice Hayden will later publish a written version of the judgment he delivered orally. This is typical. The Court of Protection regularly prepares written judgments offering reasoning and justification for decisions, and these are publicly available on BAILII.

The Ontario CCB is somewhat less open and transparent than the COP. While the CCB publishes written decisions that are publicly available on CANLII, its evidence gathering proceedings are not open to the public. But starkly different from both the COP and CCB, hospital ethics committees in California and Texas operate with the least openness and transparency. No aspect of their proceedings is observable by the public. Nor do hospital ethics committees prepare written decisions that are publicly available. Moreover, while the parties may get a letter explaining the committee’s decision, these are typically only a single page, offering far less reasoning and explanation than the COP or CCB. While some level of secrecy may be required by U.S. healthcare privacy laws, there is not even a database of redacted anonymized decisions. And while COP and CCB judgments are regularly reviewed by appellate tribunals, hospital ethics committee judgments are almost never judicially reviewed.

Competence of Decision Maker

The Honorable Mr. Justice Hayden is an experienced professional judge. This was apparent in his formal and eloquent manner. Moreover, the Court of Protection has extensive rules for evidentiary submissions, arguments, and other matters. These assure that the matter is carefully and fairly investigated, explored, and assessed. 

Still, some of what I observed is surely specific to Mr. Justice Hayden. He visited the patient in person early on the morning after the main body of the hearing and before delivering his judgment. Mr. Justice Hayden did this even though the patient was unconscious and unable to participate in the proceedings. And he described the scene as if he were writing a novel or painting a picture. Mr. Justice Hayden colorfully described the patient’s room, the garden below, and the even nurses caring for the patient. He apparently did this for the benefit of family who live in various countries around the world, unable to visit the patient because of the pandemic. Mr. Justice Hayden clearly paused to absorb and reflect on the incapacitated patient whom he was charged with protecting. This helped convey how seriously the judge approaches his solemn task. 

While the members of Ontario CCB panels are not professional judges, they are vetted and trained. And like the COP, the CCB also operates under rules of practice. In contrast, hospital ethics committees in California and Texas are comprised primarily or entirely of clinicians at the hospital. They receive little or no training in dispute resolution. And there are no rules that dictate substantive or procedural standards. Consequently, hospital ethics committees are unconstrained both in how they run the proceedings and in how they reach decisions.

Conclusion

I am grateful to the Open Justice Court of Protection Project for making it possible for me (an American in Ottawa) to be a public observer in the (virtual) court. I have a deepened respect for the COP and will help other jurisdictions view it as a model dispute resolution mechanism.

Thaddeus Mason Pope is a law professor at Mitchell Hamline School of Law in Minnesota USA. He is currently the Fulbright Canada Research Chair in Health Law, Policy, and Ethics at the University of Ottawa. He tweets @ThaddeusPope. 

Photo by Macu ic on Unsplash

Clinically-assisted nutrition and hydration: Decisions that cannot be ignored or delayed

By Jenny Kitzinger, 23rd June 2021

Hearings in the Court of Protection often bring crucial issues into sharp relief in a vivid, poignant and intellectually rigorous way. 

This was certainly so in the hearing I observed last weekCase No. 1375980T on 10 June 2021. It concerned GU, a 70-year-old man who sustained a severe anoxic brain injury in April 2014 following electrocution, a cardiac arrest and possible drowning. He has been unconscious ever since and there is no prospect of recovery. His wife, siblings and adult children all agree he would not want to live like this.  All but one family member – the patient’s eldest son – believe that clinically-assisted nutrition and hydration (CANH) should be stopped. 

The application to address whether or not continuing CANH was in GU’s best interests was brought by the Clinical Commissioning Group that commissions GU’s care (represented in court by barrister Mungo Wenban-Smith of 39 Essex Chambers). Two of GU’s family members (his brother and his eldest son) were also in court as litigants in person. GU himself was represented by the Official Solicitor (the barrister was Debra Powell QC of Serjeants’ Inn). Unusually, the hospital where GU has been treated since September 2014 was not in court and was not the applicant in this case. 

Originally, the hearing on the 10th June was scheduled as a one-hour directions hearing. However, Mr Justice Hayden, noted that even a cursory glance at the paperwork had led him to consider that the case was “ready to be heard and had been for some time”. Because “delay can be inimical to the welfare and best interests of a protected party” he wanted to move to a full hearing immediately. The priority given to this, and the flexibility of the Court of Protection and everyone involved, was illustrated by the rapid move to clear diaries and rearrange plans. 

Once the full hearing was convened, the court heard evidence from an independent clinical expert, Professor Wade, a neuro-rehabilitation consultant. He informed the court that GU was almost certainly completely unaware of himself and his environment and had been for seven years. GU was being treated at a recognised centre of excellence and had received first class physical care. There were no reversible causes of his lack of consciousness. None of those who saw him regularly as part of their work on the ward had ever noticed any interaction or any response to suggest awareness. GU had been thoroughly tested using standardised tools such as the “WHIM” (Wessex Head Injury Matrix) and the “CRS-R” (the Coma Recovery Scale – Revised). His life expectancy now might be another 10 years, but there would be no change in his condition.

We then heard from GU’s brother and his son (both of whom also had the opportunity to ask questions of Professor Wade). Between them, these two men conjured up a vivid picture of GU as a talented airline pilot, gregarious and sociable, and someone who had had “a great appetite for life”. Both men were clear in court that, given everything they knew about him, they did not believe GU would want to live in his current state. This view was also supported by written statements from other family members and friends.  

The point of divergence between the patient’s brother and son concerned the appropriateness of clinically-assisted nutrition and hydration. The brother stated that he (and the rest of GU’s family and friends) were clear that it was wrong to continue with this. The son, by contrast, said that it would be wrong to stop it. His father had expected, he said, to “go with a bang” at 36,000 feet while flying a plane – a fate almost the polar opposite, as the judge observed, to his current situation. If there was the option of a fatal injection the son said he would be prepared to give it to his dad himself, but he could not contemplate having any part “in taking away my Dad’s God-given right to food and water”. He is not alone in this: interviews with families of PDoC patients show that many feel the same way. 

Mr Justice Hayden’s skill in hearing these sorts of cases was amply illustrated in the way he handled this situation. He kept the focus on the patient while also showing a great deal of care to the family members present. He said to the son: “I entirely understand and respect both the views you express and the clarity and sincerity with which they are articulated”. When the son declared that it is “my duty to look after my dad”, the judge said it was his responsibility as a judge to think about what GU wanted for himself “not what his son would want to do for him”.  He was also careful to ensure that the son, as litigant in person and as the individual now isolated within the family as a whole, was able to express his point of view in detail and have it fully considered in court. 

Discussion of the morality of discontinuing CANH occupied a large part of the hearing. The son’s arguments were given extensive attention. This included discussion about any potential for pain (and the palliative care measures put in place to try to avoid any such possibility) and how long it might take for a person to die following withdrawal of a feeding tube. Broader ethical considerations were also addressed, including engaging with the son’s experiences of working in Africa (where he’d seen how a child might walk for miles to find water) and reflections on his appeal to the Universal Declaration of Human Rights (enshrining a person’s right to access adequate food).

The judge probed the independent expert to ensure that he addressed the son’s concerns about clinical issues, such as the potential for pain and the likely length of the dying process (estimated to be somewhere between one to three weeks), but acknowledged that the more fundamental concerns were intractable. He commented that the son’s written testimony submitted to the court presented a “brutally intellectually honest opinion”, put forward with “uncompromising integrity”, “legitimately philosophically and morally argued”, presented through a “stark and intelligent articulated perspective”.

Mr Justice Hayden offered to visit GU himself first thing the following morning and to reconvene the court after that. The hearing restarted at noon the next day and, before revealing his decision, the judge took great care to describe his visit to GU to the family – painting a vivid picture of the patient being well cared for by “heroic” and devoted nurses, in a room with a view over a rose garden (“in full and resplendent bloom”). Only then did he deliver his judgment with his conclusion that it was not in GU’s best interests to continue with CANH.

Having heard both the clinical evidence and evidence about the type of man GU had been, Mr Justice Hayden concluded that the current course of treatment was “protracting his death not prolonging his life”. He added:

None of the options available are attractive. He can stay as a husk of the man he once was for a decade (not an attractive way to die). The only other option is what his son would characterise as ‘starvation’ – but its benefit is that it can be palliatively protected and even if it is 21 days, it is not a decade” 

In the oral judgment he said:

“What we are truly contemplating is not the prolongation of his life but how he should be permitted to conclude his life at the end of his days. It’s not a ‘right to die’. It is a facet of how he should live at the end, and for how long”

He stated that CANH should be discontinued as soon as possible, and he hoped the rift in the family would heal and that they could remember GU as he had been before his injury. 

Reflections on delays in assessing GU’s best interests about CANH

Throughout the hearing, and in his oral judgment (a written one is not yet available), the behaviour of the hospital treating GU was repeatedly an issue. There were questions about their behaviour that the hospital was not there to answer. Although he wanted to make sure that the hospital would have the opportunity to make representation in the future, and underlined that the Court of Protection was “non-adversarial” , Mr Justice Hayden clearly wanted to make sense of what had gone wrong. 

Reviewing the evidence presented in the independent report, and hearing from the family, Mr Justice Hayden considered it “highly likely” that GU had been subject to treatment that was not in his best interests for some time and that “what we are doing now should have been undertaken a long time ago”. 

In discussion with the Official Solicitor, the judge explored the possibility that this unjustified treatment may have been going on since at least 2017 or 2018. 

The reason for choosing 2017 as a significant marker since when treatment has been unjustified seemed to be because this was when a series of ceilings of treatment were put in place in discussion with family members – but this discussion may have failed to address the question of the feeding tube. 

The reason 2018 is significant is because this is when the brother, with the support of the rest of the family, most overtly challenged the hospital’s use of CANH. The year 2018 is also significant because this is when the British Medical Association and Royal College of Physicians produced detailed guidelines on decision-making about “Clinically assisted nutrition and hydration for adults who lack the capacity to consent”. These guidelines include clear advice about annual reviews and the importance of consulting families to unpack what the patient themselves might have wanted.

In was also in 2018 that a landmark decision was handed down by the UK Supreme Court An NHS Trust v Y UKSC 46 (‘Re Y’). The Supreme Court ruled that it is not mandatory to seek judicial approval for decisions to withdraw clinically-assisted nutrition and hydration (CANH) from patients in vegetative or minimally conscious states. Instead, a decision to withdraw can be taken by the responsible clinicians so long as robust procedures are followed in accordance with the national guidance on and there is no disagreement about the patient’s best interests. It also made clear that the courts are still available where the patient’s best interests are in dispute, or where the decision is ‘finely balanced’. A family dispute, such as the one evident in this case, would be one clear reason for going to court if the clinicians responsible were unable to resolve this to make a best interests decisions. 

The judge underlined that “It is a principle of medicine never to do harm”. The fact that a family member had moral reservations about withdrawing CANH “does not absolve the hospital from bringing this case quickly. Doctors are not allowed to continue in a way that compromises a person’s dignity.” Mr Justice Hayden also went out of his way to try to be clear about where responsibility lay declaring: “I do not attribute avoidable delay to [eldest son]. His point [concern about CANH-withdrawal] was properly made, nor would it have ever been reasonable to expect him to change his mind.”

 It is the responsibility of clinicians to ensure they any treatment they give is in the best interests of their patients. In expressing his displeasure at the fact that the hospital was not a party to the case, the judge noted “the hospital has deliberately avoided the litigation” and stressed that “The hospital can’t be allowed to hide away from responsibility by not confronting decisions that need to be taken and then not joining legal proceedings”. Avoidance of an issue such as whether or not CANH is in a patient’s best interests “can never be reconcilable with medical ethics”. He said of the hospital, which seemed to have continued CANH by default: “To act in a way that has only one outcome is as ethically compromised as taking the wrong decision: perhaps it’s time to confront that.” 

At one point during the hearing Mr Justice Hayden commented:

 “This is one of the greatest hospitals in the world. If they can’t comply with or choose not to follow the guidelines – if the reality is that they do harm – then we have to find some way of addressing this. What can I do as Vice President of the Court of Protection?’

He concluded however:

 “I draw back from making any further comment because I wish to investigate this further. I do not wish my investigation to be conflated with the individual at the centre of the process.”

Here I, too, will draw back from adding any further comment on the delays – partly because it is important to await the outcome of further investigation and partly because, from 2020, I was myself involved in supporting this family in trying to support the best-interests decision-making processes in this case. What I plan to do in a second blog however, is to contextualise the questions Mr Justice Hayden raised about delays by reflecting on my wider experience of being asked to help in such situations, I will illustrate both some of the good and not so good practice that is happening in units across England and Wales and discuss how this has changed (or not) over the last decade, as case law and professional guidance has evolved.

In the meantime, the message from this hearing is clear. Family concerns about the morality of CANH-withdrawal should be taken very seriously indeed. This does not mean that it is necessarily in the best interests of a patient to continue to provide CANH and it certainly does not mean that clinicians can simply ‘avoid’ making a decision or ‘wait’ in the hope of an emerging family consensus. 

When considering whether to continue or discontinue a treatment,  ‘no decision’ is not an option. All institutions and clinicians working in this area need to be fully familiar with the law and professional guidelines. They need to be sure they are consulting appropriately with the patient’s family and friends and acting in patients’ best interests, taking into account the best available clinical evidence and – crucially – information about the individual’s approach to life, and their values, wishes, feelings and beliefs.

Jenny Kitzinger is Professor of Communications Research at Cardiff School of Journalism, Media and Culture. She also co-directs (with Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre and runs online training for healthcare professionals about law and ethics. She tweets @JennyKitzinger

Hillingdon 10 Years on: Another Deprivation of Liberty

By Mark Neary, 22nd June 2021

Ten years ago this month, on 10th June 2011,  I sat in the Court of Protection as the Honourable Mr Justice Peter Jackson handed down his judgment in the landmark Hillingdon v Neary case. 

The Neary in question was my son, Steven, who at the time was 21. He is autistic and has learning disabilities. The meat of Mr Justice Jackson’s ruling was that in keeping Steven away from his home for 359 days in 2010, London Borough of Hillingdon had breached Steven’s rights under Article 5 (right to liberty and security) & Article 8 (respect for private and family life) of the Human Rights Act 1998.  He also ruled that the legislation that the Local Authority had used to justify their actions, the Deprivation of Liberty Safeguards in the Mental Capacity Act 2005 had been unlawfully authorised throughout the whole year of Steven’s detention.

Fast forward 10 years and on the day before the 10th June 2021, I was browsing the Twitter feed of the wonderful Open Justice Court of Protection Project. Most days, they list the cases that are due to be heard in the court the following day. My eyes were immediately drawn to one case, listed for the morning on 10th June. One of the parties was the London Borough of Hillingdon and one of the main issues being considered was their use of the Deprivation of Liberty Safeguards for a resident in one of their care homes.

I must admit the coincidence of such a similar case, a decade apart, galvanised me and I volunteered to report on the hearing.

Back in 2011, the head of Hillingdon’s social care department stood on the steps of the High Court and told the press that they have learned lessons from the Neary case. This felt like the ideal opportunity to see if they actually had.

The hearing

The hearing was conducted remotely. It was a very different experience, watching the hearing in my shorts, scrunched up on my sofa, to being dressed up to the nines in the splendid gothic courtroom at the Royal Courts of Justice. Nevertheless, I felt welcomed and there were no technical issues whatever throughout the one-hour hearing. 

The case was about EW, who has diagnoses of dementia and schizoaffective disorder.  Now in her early 80s, EW was born and (in part) raised in Scotland and is now adamant that she wants to return to Scotland for the final years of her life.  So, this is a Section 21A application.  

Section 21A applications are very common in the Court of Protection and the Open Justice Court of Protection Project has blogged about them before.  They are effectively reviews of whether someone is lawfully deprived of their liberty.  

Sometimes they result in a person being free to leave and to choose for themselves where to live, as in the case of Mr B who was found to have capacity to make his own decision.  Sometimes, even though a person is deemed to lack the mental capacity to make their own decision, the court recognises that they want to live somewhere else and makes this possible (as in the case of Re UR, who was supported to move back home to Poland, where she hadn’t lived for more than 40 years).  But these cases take time.  All through the hearing, I was dispiritedly aware of an 80-year-old woman’s clock ticking.

This was the second Section 21A application that had come before the court for EW. The first hearing took place in 2019, where the judge had agreed with the Local Authority that it was in the best interests of EW to continue living in her current care home.  Since that hearing, EW has continued to voice her objection to being in the care home, recently raising the issue of wanting to live in Scotland. 

This was a directions hearing and as such largely devoted to making plans about what was needed for a future hearing at which a decision could be made about whether or a move to Scotland was in EW’s best interests.  The Local Authority had already agreed to provide everything counsel for the Official Solicitor (Alex Cisneros) was asking for by way of further evidence before the next hearing. The entire hearing consisted of the judge going through an agreed directions order and the judge correcting typos and suggesting a couple of bits of additional evidence that might help before the next hearing. So, although the issue of a move to Scotland was discussed at some length, much of the hearing consisted of the judge going through a list of directions (for example, arrangements for a round table meeting, plans for evidence from the Official Solicitor, an order for a special visitor report, and the date of the next hearing etc).  There were no substantive submissions from either party and there was no dispute about the directions. 

Reflections

In my view, Hillingdon was woefully unprepared for some of these discussions in ways that reveal an awful lot about attitudes towards people in state care and the sometimes large chasm between the legal process and people’s ordinary lives.  

For example, there was a discussion about whether to appoint an “inquiry agent” to look into whether EW has any relatives or friends presently living in Scotland. One desperately sad fact of the case was that in all the time EW has lived in the care home, she hasn’t received a single visitor. Hillingdon felt that tracing anyone who knew EW would ultimately prove fruitless and were against an inquiry agent being appointed. I suspect that part of this objection was about cost, and  Hillingdon felt that an inquiry agent would only duplicate the efforts they’d already undertaken (unsuccessfully) themselves. As with all the directions, there was lengthy discussion about the timescales required to carry this out. 

The judge asked for a “pen portrait” of EW. She wanted to get an understanding of EW’s personality – her likes and dislikes,  her beliefs, what she does with her time in the care home. The judge reminded the local authority solicitor that this was important so a balance sheet approach could be taken about what aspects of EW’s life could be transferred to Scotland. This pen portrait will be served along with all Hillingdon’s other evidence (including a Care Act assessment, a search for alternative placements in England and consideration of a move to Scotland) in six weeks time. 

I think I was muted by the court clerk. I hope I was muted by the court clerk.  I wouldn’t have liked my gasp to have been heard as I reacted to the idea that it might actually take as long as six weeks to produce this bit of evidence.  Steven’s support workers could knock up a very thorough pen picture of him in 15 minutes. I had the awful feeling that probably nobody has taken the time to find out what EW is really like.  

Similarly, and this was a direction from the 2019 hearing, the judge had directed that EW’s room in the care home be personalised. This hadn’t been done. It wasn’t an oversight. It was believed by Hillingdon that personalising her room may cause EW to become agitated. It didn’t sound like the judge bought into this theory and she kept it on the directions list. EW had been clear that Inverness was her favourite place in Scotland. Would it be too time consuming or too upsetting for EW if someone were to print off a photo of an Inverness landmark and purchase a photo frame from Poundland? Small acts of humanity seemed in very short supply.

One of the earlier directions had been carried out. A medication review had been ordered and had already taken place. The outcome was that EW’s medication has been changed and that her “behaviour has improved.” When pushed on what that means, the court were told that EW’s delusions happen less frequently. I’m fascinated by the framing of this. Is a delusion a behaviour? There were moments when she believed that her parents were still alive and that she would see them again in Scotland. I’ll address the mental capacity issue shortly, but there was a sense that this occasional thought of EW’s might come back to bite her.

EW’s wish to end her days in Inverness may not weigh heavily in the best interests decision that will need to be made if the court decides that she lacks capacity to make her own decision about where to live.  I worry that the groundwork for that  is already being prepared. There was a weariness whenever Scotland was mentioned. 

At best, her desired move may be put down as an unwise, sentimental wish; at worst, an example of her delusions. I started to recall that wonderful 1980s film, The Chain. In the final section of the movie, a wealthy, retired judge (aptly) played by Leo McKern learned he was terminally ill and decided to sell his Mayfair home and return to the street he had been brought up in at Hackney. It didn’t end well. Observers may have seen it as an unwise move. But nobody was assessing Mr McKern’s capacity, so he could follow his plan and deal with the consequences of that. So what if EW’s last wish is sentimental?  So what, if it turns out that she is no happier in Scotland than she is in Hillingdon?  I’ve written many times before (e.g. here)  about how mental capacity assessments are weighted heavily against those being assessed. The whole process becomes a head exercise. The person has to demonstrate their reasoning powers; that they can weigh up pros and cons. Even if they can do those things, they then have to have the verbal ability to convey their thinking process to a sceptical outsider. For people like EW, decisions driven by the heart or their gut aren’t permissible.

I may have missed it, but by the end of the hearing, I don’t think a date had been set for the final hearing. The deadlines that Hillingdon requested for each of the directions I’ve listed above added up to a few months. I sat on my sofa after the hearing ended, for over an hour, lost in a kaleidoscope of thoughts. People: real human beings, people in the middle or at the end of their lives. Processes: long, legal processes alongside local authorities who have long-since lost the oft-quoted mantra from Mr Justice Munby that the State is the servant and not the master (para. 52, A Local Authority v A and another [2010] EWHC 978).

I don’t know whether EW will ever get her return to Scotland. I doubt it. The odds couldn’t be more stacked against her, despite the humanity of the judge. 

I hope, at least, she lives long enough to see a resolution to this inhumane circus – and maybe even gets to see Inverness again. 

Mark Neary is a counsellor, writer, campaigner and trainer.  He’s the father of Steven Neary, a young man with autism and severe learning disabilities, who was at the heart of a landmark Court of Protection case  (Hillingdon v Neary).   He blogs here and is the author of Get Steven Home (here).  He tweets @MarkNeary18

Editorial Note: NEWS FLASH: We’ve just heard that the next hearing (which won’t be the final hearing at which a decision about a move to Scotland is made, but a case management hearing) is scheduled for 2pm on 2nd September 2021 before DJ Ellington, as a remote hearing, with a time estimate of 2 hours.

Illustration by Northlimitation, Public domain, via Wikimedia

An urgent court-authorised Caesarean: Seeing behind a published judgment

By Rebecca Brione, 21st June 2021

Editorial Note: This judgment has now been published: University Hospitals Dorset NHS Foundation Trust & Anor v Miss K [2021] EWCOP 40.

I am a bioethicist and reproductive justice researcher. I am also currently the Research and Partnerships Officer at the charity Birthrights, which works to protect human rights in childbirth. I have been following maternity cases in the Court of Protection in both capacities for some years, but I had never previously observed a hearing. 

I particularly wanted to observe a hearing concerning decision-making about childbirth because I have significant concerns about how decisions have been made about obstetric intervention in previous cases – in particular the tendency to conflate maternal and foetal interests, the sense that women’s voices are often lacking, not properly heard, or dismissed, and assumptions about what ‘safety’ in birth means.

My interest in Court of Protection decisions on childbirth was first spiked by the media storm around the Re AA case in 2012, in which the Court authorised a Caesarean on a 39-week pregnant Italian woman, originally in the UK for a work-related visit but subsequently detained under the Mental Health Act 1983 after she stopped taking medication and become unwell. The Court found a Caesarean to be in her best interests, apparently due to the risk of uterine rupture. Her voice was completely absent from the proceedings, and her baby subsequently (and separately) removed into child protection. Inaccurate (and in some cases hyperbolic) media commentary led to the judgment in the case being published in 2013. In fact, the imperative to publish in this case forms part of the push for transparency in the Courts that made it possible for me to observe now.

In the intervening years, there have been a significant number of obstetric intervention cases, including a recent case I blogged about in which the Court authorised planned transfer to hospital for an agoraphobic woman who wanted a home birth. I had been unable to observe that case as remote attendance was not permitted, so my blog – like the others in the series – is based on the published judgment. Whilst these are invaluable resources, I am always aware that they paint only a part of the picture, and that as a reader you don’t always feel confident that you can really understand what went on behind the scenes: how the case came to Court in the first place, what support the person at the centre of the case had received and experienced, and what happened during the hearing.

I was therefore really keen to observe a case for myself. When Celia messaged me at about 2.30pm on Thursday 10th June 2021 asking if I was free “now” to observe a hearing, however, I have to confess my first thought was of being utterly unprepared. I wasn’t ready, I had other commitments, I was nervous. Thankfully pragmatism quickly took over – I found a shirt to go over my running clothes and emailed requesting the link, which was promptly sent. I logged on to observe. I am so glad that I did. It will not be the last time!

In this blog I will share some of my reflections on the process as well as on the case. I have to be clear that I did not observe the whole hearing and I missed some parts at the start, and another part after an adjournment, that would have been really helpful for me to hear. I must say, though, that being able to observe remotely made the whole experience so much more accessible than it would have been. I could access the hearing immediately, I could and did nip out to collect a child mid-way through. I would not have been able to observe this case had it required in-person attendance. 

The hearing

The hearing (COP 13766836) was about whether or not it was in the best interests of a pregnant woman (Miss K) in her late 30s with a diagnosis of schizophrenia to undergo a planned Caesarean section. It was a complex and challenging situation.

At the point at which I joined the hearing (about 3.00pm), the Court was hearing evidence from the treating consultant psychiatrist, Dr B, who had been overseeing Miss K’s care for the previous fortnight or so. The judge was Mrs Justice Lieven and the two barristers in Court were Emma Sutton (for the Trust) and Katie Gollop QC representing Miss K (via the Official Solicitor). 

Miss K had discontinued medication when she realised she was pregnant and was now “acutely distressed and unwell”.  

Dr B described Miss K’s behaviour as variable but as having recently deteriorated, and she was at times being restrained, sedated and isolated in the Psychiatric Intensive Care Unit (PICU) where she was detained under s. 2 of the Mental Health Act 1983.  Dr B said this was an unusual case: “I do locked wards: only the most seriously ill patients come to me and we hardly ever have pregnant ladies on our unit”. Miss K was refusing oral medication and being given intramuscular injections.

Dr B said that Miss K had been “compliant” with antenatal services and had recently gone “willingly” for an ultrasound. He said the difference in engagement was difficult to explain, although he did comment that obstetric care helped assuage some of her “paranoid delusions about the foetus”. 

He was asked about waiting for labour to commence naturally:

“If we wait for spontaneous delivery we’d need to wait another few weeks and the patient is not easy to manage.  We have to go lightly with doses of anti-psychotic because of the pregnancy.  There are risks associated with physical restraint.  We don’t have adequate access to monitor the baby….  It’s difficult to listen to the foetal heartbeat because we don’t want to put our heads too close to her tummy, because we might get thumped – it’s as simple as that”

He also noted that the psychiatric and obstetric units are about two miles apart, meaning that transport and staffing to support (or manage?) Miss K played into the decision.

Care Plan

After hearing this evidence, the Court turned to look – with the witness – explicitly at the care plan. I did not have a copy of this, but was significantly aided in my understanding by the thoughtful questioning from both Counsel for the OS (Katie Gollop QC) and the Judge who asked lots of questions herself and seemed very focussed on keeping Miss K at the centre of case. 

In particular they raised concerns about the plan for her psychiatric care and support post-Caesarean (if ordered). A meeting on 20th May 2021 had led to a plan for the baby to be removed at birth by the Police using their powers of protection pending the Local Authority applying for an emergency protection order.  Miss K was not told of that plan until two days before this hearing.

The Judge asked: “At some point she’s been told they are removing the baby. Has she experienced that as distressing?”.  “Yes”, said Dr B, “I think she has”.

Little thought seemed to have been given to Miss K’s care needs on coming round from a general anaesthetic to find her – much wanted – baby to have been removed. The care plan seemed to assume that she would be relatively sedated for a lengthy period as a result of the general anaesthetic; something the Judge questioned (“not speaking from personal experience”) as being ‘not normally the case’ for a Caesarean, “where the dose is often quite a light dose and wears off quickly”.

In this context the care plan post-birth was described as a “recipe for severe problems”. 

“You’ve potentially got a very, very distressed patient here. She comes round from a major operation with no baby.  She’s highly distressed, and she in the obstetric unit not the psychiatric unit. I’ve seen videos of physical restraint. It’s not a pretty sight however well trained you are. The care plan has about a page and a half about physical restraint at this point – physical restraint on a woman who only hours before has had a caesarean.   The plan needs to say more about the alternatives to restraint after the birth”

The care plan also needed to say “more about before the birth” added Emma Sutton.  “Yes”, said the Judge, “let’s call a spade a spade. She’s being forced into an ambulance to have a Caesarean to have her baby removed.”

The care plan seemed to be focussed much more on the use physical restraint than supporting Miss K with her distress in the immediate term and after discharge – and whilst this was disturbing to hear, I was also really heartened by the way the Judge and Katie Gollop QC for the Official Solicitor kept returning to this point. They raised what seemed to me to be highly practical concerns about ensuring safe wound care as well as asking questions about why there wasn’t more consideration of use of family support or medication, given the “page and a half” in the care plan on physical restraint. Whilst the Judge said that she knew that “none of the medication is going to resolve the fundamentals of the situation”, it was important to recognise that Miss K was already showing extreme distress and would be “highly distressed” to emerge from a major operation without her baby. She said outright that “I don’t feel that the discharge planning and care planning is sufficiently detailed to give me comfort”. 

Miss K’s wishes

Nobody suggested that Miss K had capacity to make her own decisions about the birth.  The judge said there was “very clear evidence” that she could not process information given to her or weigh it up to come to a decision.  In accordance with the Mental Capacity Act 2005,  therefore the hearing was focussed on making a decision in her best interests, giving weight to her own wishes.

Discerning Miss K’s wishes and feelings turned out to be impossible. This was not for lack of trying in the short time available. The Official Solicitor had sent an agent to the hospital to try to speak to Miss K during the hearing, but she declined to speak to him.  Counsel for the OS (Katie Gollop QC) reported back: “She won’t answer questions or engage with him.  She was earlier preoccupied with wanting to make a phone call to her father.  I think this conversation isn’t going to happen”

The Court heard from the treating obstetrician, Dr A, that Miss K had said she wanted a Caesarean – and indeed the obstetrician thought she had taken capacitous informed consent for a Caesarean earlier in the week. However, it emerged that the obstetrician either did not know, or did not recall that the baby was to be removed after the birth and had therefore not factored this into her discussions at all: 

At this point it became apparent that someone else was in the room with the obstetrician who was giving evidence and he began speaking to her.  The Judge immediately intervened asking who he was.  He turned out to be from the Hospital’s Litigation and Claims Department.  “I can hardly emphasise too strongly,” said the Judge sternly, “how inappropriate it is to speak to a witness who is giving evidence in court”

The published judgment records the Court’s reaction to Dr A’s evidence:

… the Official Solicitor was “appalled” at parts of Dr A’s evidence. In particular, the Official Solicitor’s concern, which I share, is that Dr A gave evidence that her view was that Miss K had given capacitous informed consent on Monday to a planned caesarean section, but did so stating that she wanted to hold her baby and keep the baby safe and that she was delighted to give birth sooner rather than later (by having a caesarean section) so that she could hold her baby earlier. This evidence was deeply moving because it had already been decided on 20 May 2021 that the Local Authority would take the baby away at birth. So the true position is that when Miss K comes round from the general anaesthetic, there will be no baby. However, Dr A appears not to have understood this or known it. The Official Solicitor, as I am, is staggered by this as Dr A did not seem to have any understanding of what would happen to the baby following the caesarean section taking place”. (para. 17, University Hospitals Dorset NHS Foundation Trust & Anor v Miss K [2021] EWCOP 40)

Unfortunately, I had to leave before the end of Dr A’s evidence, but what I heard really worried me on many levels. It seemed to reflect a complete failure in multidisciplinary care and planning and also left me uneasy about how the Trusts had approached the need to go to Court for an order.

I gather that, shortly after I left, the Court adjourned for amendments to be made to the care plan. These were discussed before I was able to return – I understand they concerned the use of medication around the period of birth and postnatally. When I re-joined, closing statements were underway. 

Closing statements and judgment 

At the point at which I re-joined, the Court was reflecting that Miss K had been invited to make a decision about mode of birth on the “wholly false premise” that she would be able to hold her baby – they could not know what she would want had she been informed of the plan at the time she ‘consented’ to a Caesarean. (The Judge did reflect, helpfully for me, that the fact that removal at birth was planned did not mean that Miss K may not be later reunited and able to care for the child.) The Trust had reiterated their position that they wished the court to authorise the Caesarean.

Katie Gollop QC, acting for Miss K via the OS set out what I think is a fairly unusual position of taking no view on what the best interests of Miss K would be. This was because, she said, she had no sense of what Miss K’s wishes and feelings were. The Judge commented that she had looked at the attendance note from the OS’s agent and that there was some evidence that Miss K wanted to protect the baby, and that, therefore presumably wanted the baby birthed safely.  

It has to be said that I heard no specific evidence that vaginal birth would not be safe; rather some brief evidence that monitoring labour would be challenging and that waiting for birth would involve further stressful interactions (for staff – whose best interests should not be considered – as well as for Miss K herself). I would have liked to have heard more about the potential to consider whether supporting a vaginal birth may have allowed Miss K more opportunity to be engaged with the “much wanted” pregnancy and baby, and avoid the extreme scenario of being cut open and having her baby removed before she awoke. I would also have liked to have heard evidence from any midwifery support she had received during her maternity care: their experiences of her engagement and interactions over time could play an important part in understanding if and why she was engaging differently with different aspects of her healthcare, and how her views on the pregnancy and wishes about birth had developed over a longer period.

Given the urgency of the case, Mrs Justice Lieven gave an oral ex tempore judgment. The published judgment is now available and closely reflects the oral judgment as I heard it in Court. 

She first raised gave concerns about the timing of application – which are worth reading in the judgment if only to sense the extent of the judge’s unhappiness about how this case had come to court. The need for a court hearing in this case could have been foreseen, she said and “it was incumbent upon the Trusts to have made this application significantly earlier”.

It is wholly unacceptable that NHS Trusts routinely put the Official Solicitor in such a position where she cannot do the job she is instructed to do, and where her role effectively becomes a tick box exercise. This is a waste of resources and wholly unhelpful to P’s best interests.” (para. 4, University Hospitals Dorset NHS Foundation Trust & Anor v Miss K [2021] EWCOP 40)

As an observer, I would have to agree. 

The Judge went on to make the observations about Dr A’s evidence earlier in this blog.

In terms of the best interests decision itself, the reasoning was familiar to those of us who follow maternity cases. Mrs Justice Lieven noted that Miss K was “plainly concerned about the safety and best interests of her baby. I have no reason to believe her wishes would be anything other than to have the safest birth possible”. The ruling reflects on the risk of further deterioration in Miss K’s mental health, “continuing with the pregnancy plainly poses some risks to the baby” and that she would be unlikely to cooperate with intrapartum care. “Therefore, allowing her to go through a vaginal birth would be highly risky to her and her baby.” [at para. 19]

Risks could be “minimised” with a Caesarean, and with the care plan now available.  “In those circumstances it seems to me to be absolutely clear that a planned caesarean section is a better option”. [at para 22]

Reflections and postscript

Since the hearing, I have thought long and hard about that decision. 

I did not envy Mrs Justice Lieven, who herself commented that she did not have the luxury of declining to take a position on best interests. Although I didn’t have the advantage of hearing all the evidence, I am far from convinced that I would have felt better placed to make a best interests decision myself if I had. 

I can see why planned care for someone in a highly distressed and deteriorating state is attractive on many fronts. However, like the Court, I really struggle with the sense that there seems to have been no attempt to engage openly and honestly with Miss K, at a time when she may have been better placed to consider her wishes and feelings in an inevitably harrowing situation. 

I remain really concerned that it apparently took a Court application to put Miss K’s wellbeing at the centre of the care planning and I wish very much that I had heard what other support – if any – was added to the care plan in the light of the concerns raised. I wondered whether the option of vaginal birth could have been given more consideration in comparison to a surgical birth under general anaesthetic. I worry that the description of a Caesarean as “safest” in the abstract seems to turn on a very narrow – and arguably foetus-focussed view – of what safety means.

We now know from a postscript to the published judgment that Miss K transferred without restraint to the hospital the following day, “met with the clinicians and engaged with them fully and walked into theatre”. When they’re available, the postscripts to such cases often report that the woman in question acquiesced to treatment or complied with clinicians, often contrary to the staff’s prior expectations.

Pre-operative monitoring identified concerns about the foetus at that point, but the baby was born by Caesarean and is now doing well. The postscript does not say how Miss K is doing. I wish I knew.

In the light of this later clinical information – not of course available at the time of the hearing – it seems clearer that Caesarean may have been the better option. 

Nonetheless, my disquiet about how Miss K was seen and heard throughout her care remain. 

And, as they did last week, my thoughts keep returning to a woman who may have walked into theatre, but who awoke from the operation to find her “much-wanted” baby gone. 

Rebecca Brione researches bioethics in relation to pregnancy and birth and tweets @RebeccaBrione. She is also the Research and Partnerships Officer at Birthrights @birthrightsorg. She has written this blog post in a personal capacity.

Photo by Amit Gaur on Unsplash

Chaos in court and incompetent decision-making: Visual monitoring Part 2

By Claire Martin, 17th June 2021

This hearing, on 6th and 7th May 2021 before HHJ Howells at Wrexham County and Family Court (COP 13575520 Re: B) was the second hearing I’ve observed concerning “David” – a 39-year-old man with a severe learning disability, poorly controlled epilepsy and congenital cerebral palsy with right-sided hemiplegia. 

At the previous hearing, on 11th February 2021, I’d learnt that David’s care team, concerned about his night-time seizures, had installed a visual monitoring system almost two years before, without holding a best interests meeting about this, and without consulting David’s family. Counsel for David at the last hearing stated that there had been a ‘wholesale failure by either public body [to recognise that] a video monitoring system required a best interests decision’.

Having blogged about this case previously,  I was very pleased to be able to attend what was (again) intended to be the final hearing for David, and a judgment on the issues of:

  • whether a visual monitoring system (VMS) is in David’s best interests, and if so, how this will be deployed and monitored, and
  • whether the public bodies should be responsible for paying David’s legal costs.

The applicant was David, represented by Emma Sutton and instructed by David’s litigation friend, his Relevant Person’s Representative.  The respondents were the local authority (represented by Robert Goodwin), the health board (represented by Anna Tkaczynska) and David’s parent (her choice of descriptor), who was a litigant in person.

When the hearing started, I was asked to confirm to the judge that I had received, read and understood the Transparency Order for the case. I was the only public observer on this occasion and the judge (HHJ Howells) noted that I had previously written a blog about the same case, which I was surprised to hear her comment on to the court!

Delayed Submissions – an ‘unfortunate situation’

The hearing started inauspiciously, with HHJ Howells stating that it looked like there might be a ‘change in position’ from some parties, though noting that the ‘amended bundle … amounting to  435 pages digitally, was only filed yesterday or the day before’. It transpired that the position statement for the Health Board, as well as their updated care plan proposal were only filed on the day of the hearing (due to start at 10.30am).  This is despite the fact that – as I noted in my previous blog about this case –  “The judge asked for Position Statements forty-eight hours in advance to allow all parties to read and digest the contents.”

Other documents (care home records, MDT meeting minutes, an article from a medical journal, some emails) were said to have been ‘filed very late’ and Emma Sutton (counsel for David) said there was: 

“… a plethora of additional information [submitted] an hour before a two day trial. I am making my way through it but there is a significant amount of information. … This is a wholly unacceptable position the Health Board has put people in.[1]


It became clear that the Health Board had failed to provide the required updated information or position statement by 4pm on 4th May, when the hearing was at 10.30am on 6th May. The judge said that ‘costs will be considered’ and addressed counsel for the Health Board:  “Ms Tkaczynska you have a chance to explain”.

In response, and by way of explanation, counsel for the health board ran through a list of documentation, when it was filed, who received what from whom, and there ensued a multi-way conversation between all barristers and the judge about when documents were requested, why they weren’t chased when they were not received and why the Litigation Friend for David (his RPR – Relevant Person’s Representative) had been missed from some communications (it emerged that an incorrect email address for her was used in communications from the Health Board). This was then not rectified, meaning she was not included in a Best Interests meeting. I observed the judge with her head in her hands at one point, looking exasperated. 

One would have thought that if the litigation friend didn’t respond it would have alerted others to the need to chase up, but this doesn’t appear to have happened. …. I have received all these [documents] and I am willing to proceed but it’s not fair on others, especially counsel for [David] and his parent.”  (HHJ Howells)

Emma Sutton suggested a half hour break to give people time to read the documentation. The judge thought that ‘optimistic [because] important information needs to be absorbed as well as read’. I was struck, especially, by the judge’s care for David’s parent, who was representing herself, and was abroad, in a different time zone and had not received all of the relevant documentation until the morning of the hearing. The genuine consideration of what this might be like for her was palpable, and it was made clear that she could ask for longer if she needed more time: 

HHJ Howells:  “This is an unfortunate situation – especially for the litigant in person. [Addressing David’s parent] you have permission to drink caffeine!

We returned at about 12.20pm. It was still not clear (to anyone) what the Health Board and Local Authority’s positions were – either in relation to David’s care needs, or their proposed options to meet those needs or their proposals to put different options into effect. Emma Sutton noted that this needed further exploration. David’s parent’s view was that the VMS should be removed ‘immediately’. 

Evidence from the Expert Witness

The first witness was Dr Dougall McCorry, a Consultant neurologist and epilepsy specialist.

He was a witness for David, the applicant, and so Emma Sutton opened the questioning to elicit the evidence in chief.   She took the witness through his expert views on the practice of video-monitoring for epileptic seizures, the types of seizures most associated with SUDEP (Sudden Unexpected Death in Epilepsy), David’s particular risk of SUDEP and Dr McCorry’s view of the best way to mitigate those risks. 

Emma Sutton went on to explore movement monitors (e.g. wrist alarms), mattress alarms and anti-suffocation pillows. 

Cross-examination followed.  Anna Tkaczynska (counsel for the Health Board) asked questions about proposed additional staffing for observation, the likelihood of picking up and attending all seizures and the balance of risk and privacy for David. Dr McCorry was clear that, from a clinician’s perspective ‘the gold standard is observation at all times’. This led to the following exchange:

Counsel for the Health Board then asked Dr McCorry to clarify the view from his supplementary report regarding the reasonableness and efficacy of trialling other monitoring technology. Dr McCorry replied: “In the current care plan – are we adding to his care? Will we detect more seizures with a mattress or movement alarm? If you really want to know what percentage you’re picking up, you must observe as well, to audit.”

This point – about accurate measuring of the percentage of seizures that can be detected by different monitoring practices, was really the nub of the case. 

It later became clear that evaluation of the VMS had never been part of the installation plan in terms of whether it increased the number of seizures it accurately picked up. So how could the team know if that level of intrusion might be justified? This seems like a really important point to me – the VMS was simply installed on the advice of the treating clinician without a plan to collect evidence of its safety benefits over time, to weigh against the intrusion into David’s privacy.

By the end of Dr McCorry’s evidence in chief, I thought he was suggesting that the permanent observation of David (including using the VMS) was a certain way of picking up all of his seizures. However, further questioning of Dr McCorry by David’s parent (as well as later evidence from David’s treating medical consultant) suggested otherwise. It became clear that VMS for people with epilepsy (including David’s kind of epilepsy) is quite unusual – his treating clinician later stated ‘5% of people I see’ have a VMS set up. It also wasn’t entirely clear why this had been implemented for David at the time it was. Furthermore, he hadn’t had any of the types of seizures of concern, at night, for over a year (which I think were the original justification for the use of the VMS). 

There was a break for lunch and at 2.25pm the hearing resumed with an expectation that David’s treating clinician would be the next witness for the Health Board. Prior to this, however, it was reported that agreement had not been reached between the public bodies for funding of additional care at night for David. This was important because the treating clinician would be questioned on different potential monitoring methods for David, which would necessitate more staff at night (and thus increased funding).

A discussion ensued between Robert Goodwin, counsel for the Local Authority and the judge regarding the LA position on funding of additional care for David. Robert Goodwin reported a misunderstanding between the Health Board and LA regarding the funding ratio as well as how additional care resourcing would be deployed (solely for David or shared). Frustration rippled through the court:

The judge addressed David’s parent: “The Health Board and the Local Authority are at cross-purposes in terms of funding an additional person – whether this is for [David] or to share with others. Are you prepared to continue?“  David’s parent replied ‘Yes’. 

My reaction at this point was astonishment at how patient the judge and David’s parent were. The care system appeared in a mighty pickle about all sorts of things, and readiness for the hearing with clear and comprehensive options appraisals, care plan proposals and funding  had not, seemingly, been their priority. 

The hearing nevertheless continued with evidence from David’s treating clinician. 

Evidence from Treating Clinician 

David’s treating clinician had known him for 15 years. Counsel for the Trust asked minimal questions of her witness and then counsel for the local authority cross-examined him,  focusing on evaluation of the VMS and staffing required for this. David’s treating clinician outlined his view of what would need to happen to reduce the use of the VMS: at least a year with no overnight seizures.  He said “In my view [David] needs to be observed at all times – how that’s done is for the care team”.  Irrespective of the lack of legal process regarding deprivation of liberty, I found it curious that, how it was subsequently deployed (2:8 staff:resident ratio) meant that the VMS could not facilitate ‘observation at all times’

Litigant in Person cross-examines David’s Treating Clinician

I found this part of the hearing fascinating.  It is important to know that David’s parent is a medical doctor herself and had done a lot of research about the nature of David’s epilepsy, risk of SUDEP and how best to mitigate those risks. She asked about population versus individual risk for David and proffered a view that, for people such as David, the longer they live without ‘succumbing to SUDEP’, the less at risk they are as time goes on. The treating clinician disagreed with this view. His estimate of SUDEP risk for David was 1:300 in any one year.

I have not heard a litigant in person question a witness before. I am not sure how common this is in the Court of Protection. It was a particularly affecting exchange because David’s treating clinician had seemingly had a good relationship with his parent over 15 years, and he clearly cared about David’s welfare. At the same time, it was evident that something had gone very awry with the planning and communication around David’s care. 

It was my understanding that the night-time GTCS were the reason for the installation of VMS, so this was a pertinent point raised by David’s parent. They then discussed evidence around SUDEP and comorbidities, papers that the treating clinician cited (but did not provide) in his evidence. The treating clinician said that the ‘SUDEP data doesn’t allow such a fine-tuned analysis’.  

David’s parent had asked very probing, evidence-based, questions regarding risk and mitigation of risk, and applied them to David’s recorded seizures. The treating clinician seemed somewhat flummoxed by this and I felt unconvinced that he had properly considered whether the VMS would actually offer the protection to David that he proposed it would. David’s parent was of the view that it did not, and therefore the intrusion into his privacy was not justified. 

Counsel for David, Emma Sutton,  then picked up this line of questioning and  argued that the blanket, night-time VMS – which was meant to offer ‘observation at all times’ to mitigate risk – was not, in reality, viewed at all times. 

As counsel for David, Emma Sutton’s questioning was concise, incisive and absolutely to the point. She had clearly extracted the key pieces of information regarding the process of David’s care and was able to lead the court along a path that revealed a clearer view of the issues.   Here’s an example:

Following Emma Sutton’s questioning, my sense at this point was essentially this: that the medical consultant involved in David’s care took a cautious and conservative approach, without considering a range of options. Everyone (who was included in the process) deferred to the medical consultant’s view. Apparent blanket observation was decided upon, due to his worries about night-time seizures. How this was then operationalised was not specified and did not, in reality, afford the additional protection he desired. The treating consultant did not have a full grasp of how, and how effective, the monitoring of the seizures was. 

Leaving aside the unlawful installation of the VMS, the use of the monitoring device in practice felt very messy without a plan for evaluation of its effectiveness. I was also struck by the treating clinician’s response of ‘expecting’ a Best Interests meeting to be arranged – if he had expected it, and it hadn’t happened, why didn’t he rectify this situation (especially since it is a legal requirement)? 

Further questioning from counsel for the Health Board and the judge further displayed the difficulty of establishing a clear picture of how a trial (of any technology) would be put into operation and then evaluated carefully. I came to the view that this was because alternative, less intrusive, means of monitoring David’s seizures had simply not been considered. An earlier question from Emma Sutton (counsel for  David) perhaps sheds light on why this might be:

I would have thought that’s exactly what did need to happen, under the MCA 2005. 

The fact that David’s RPR was not part of some meetings, the fact that a BI meeting was not arranged prior to the VMS being installed, and the fact that his parent was left unaware of the presence of the VMS for a year after it was installed, would suggest that privacy hadn’t been on anyone’s radar for David. 

That was the end of Day 1. My takeaways were that:

  • David’s treating clinician was, understandably, worried about his night-time seizures and recommended a VMS to be installed. This recommendation was actioned by the care system without following the Best Interests process required by the Mental Capacity Act 2005.
  • The treating clinician was oblivious to the evidenced fact that he did not know how the VMS was actually used in practice, and to whether and how evidence was gathered to enable evaluation of its effectiveness, so it was not possible to know if it had, actually, improved monitoring of David’s seizures. The situation reminded me of this quote from Noam Chomsky: “Science is a bit like the joke about the drunk who is looking under a lamppost for a key that he has lost on the other side of the street, because that’s where the light is. It has no other choice.”
  • The Health Board and Local Authority had not reached an agreement for additional night-time funding, or a plan for different monitoring options. 

Day 2: 7th May 2021, 9.30am. 

The Lead Professional Learning Disabilities Nurse from the Health Board was questioned. as a witness for the Health Board. (I’ve referred to her as Lead Nurse below.)

Before her testimony could be considered, DJ Howells discussed the unresolved issue of funding between the Local Authority and the Health Board. Robert Goodwin for the Local Authority offered an apology for the ‘confusion’ about funding.  He said, “We have had limited evidence from the Health Board and did not understand what they proposed regarding extra night staff.’ The Local Authority was willing to fund 40% of this additional staffing. This was agreed with the Health Board and the hearing was able to continue. 

Counsel for the health board asked the witness to describe her role. The Lead Nurse explained that she oversees the nurses from the Health Board who look after David’s care. Her role in the CoP hearing was to bring together a full options appraisal (for the monitoring of David’s epilepsy) for the court to consider. A curious exchange occurred at the start:

I was very surprised to hear the lead nurse’s reason for not ensuring that David’s RPR was part of the options appraisal for his care. What she would have needed to support that reasoning was an email back from the RPR stating that she was not allowed to respond to an options appraisal. This was not what happened. 

Robert Goodwin for the Local Authority then cross-examined the Lead Nurse: 

She then referred to minutes from a Best Interests meeting of 9 July 2020, chaired by a Mental Capacity Act practitioner from the Health Board. The judge asked if the minutes were in the bundle – they weren’t. Counsel for the Health Board stated that she did not know why they weren’t shared; they were an 8-page document. It was agreed that the court needed a twenty-minute break to read this document and the judge (addressing David’s parent) said: “Please say if you need more time to read these. Someone acting for themselves should have plenty of time. My tone says what I think about this.”

And addressing counsel for the Health Board, the judge said: “This is not the way it should be done – piecemeal disclosure. It is not fair for [David’s parent] to not have all the information which is under consideration. I suggest everyone goes for a cup of tea. I’m leaving this hearing yet again.” (Judge)

When we returned the judge addressed David’s mother once again:

All agreed to continue. I felt angry on David’s parent’s behalf at this point. She had not been informed about a video-monitoring system for him, had not been included in a subsequent Best Interests meeting when it did, eventually, take place, and her right to have a voice in these processes had been entirely over-ridden. It felt as if, because the care team knew she might hold a different view to theirs, they simply wrote her out of the story. 

Counsel for the Local Authority, Robert Goodwin, continued his cross-questioning and asked the lead nurse about assistive technology being considered at the Best Interests meeting on 9 July. She said she had not been in that meeting and couldn’t comment on ‘how the discussions went’.  

It was beginning to look as though no one whose responsibility it was to oversee David’s care (his treating clinician and the lead nurse who was tasked with drawing up an options appraisal) had entered into a deliberative process about methods to care for David, balanced with his human rights. I kept wondering: ‘what if a video-monitoring system IS, in the end, in David’s best interests and they just hadn’t done the working out’. 

It reminded me of another case I observed, and contributed to a blog about, called ‘When Expert Evidence Fails’. In that case, the expert witness expressed a clear view about P’s capacity to consent to sexual relations, but had not followed a clear, deliberative process to reach his decision. This seems to me so important in our work with vulnerable people who might lack capacity for certain decisions. Without this demonstrable process, it can look like, and I would suggest often is, our own view of what is best for P, rather than a holistic, person-centred consideration. 

Further, when one professional’s view dictates the outcome, this seems even more likely to be the case – privileging only what we consider to be in the best interests of the person, based on our expertise in that one very specific aspect of that person’s care. As Dougall McCorry said earlier: “I’m not the bigger picture about his whole life – I’m looking at his clinical picture”David’s parent then cross-questioned the witness. She picked up Robert Goodwin’s questioning of the lack of consideration of all options for monitoring David’s epilepsy, noting especially that there had been a Best Interests meeting on 9th July 2020 and the options appraisal had not been available until 7th April 2021, nine months later. Her questioning illuminates potential issues with a best interests process sitting with one ‘dominant voice’

Further questioning from Emma Sutton showed that the balance of safety and privacy for David really had not been considered. There were several quite terse and revealing exchanges: 

There was then discussion again between Emma Sutton, the lead nurse and the judge about the fact that the Health Board’s recommendations were based on increased funding, yet, at the start of the hearing, funding for those recommendations had not been secured with the Local Authority:

And later in relation to the RPR asking for ‘less restrictive options’ to be considered: 

I wondered whether the lead nurse had been placed by the Health Board in an invidious position. She did not seem to feel confident in guiding all the people involved in David’s care and welfare through a thinking, questioning and balancing process to compile a balanced options appraisal – something for which you do not need medical expertise. 

Counsel for the Health Board intimated that there would be no point adjourning) since “What else needs to come to the table? Would anything else trump [treating clinician’s] view?” Although the Lead Nurse thought nothing would, the judge pointed out: 

But [treating clinician] is not the decision maker in the Court of Protection. He might be in the Health Board, but not here. It might not change the Health Board’s decision but it might provide more information to the court, so we can weigh in the balance for [David]. At the moment [lead nurse] evidence is that she accepts that these should be looked into.  (Judge)

With that, it was agreed to break for a joint parties’ meeting to confer about ways forward. This was 12.19pm. 

My thoughts at this point were, first, this seems like an almighty mess! Two days of court time (plus previous hearings over the past year) and there was still no comprehensive options appraisal, care plan proposals for different options that were proposed or funding agreed. I might be being unfair – we have been living through a pandemic during this time – however, the VMS was installed prior to the pandemic and I couldn’t help thinking that, had due process been followed then, the case might not have needed to come to court. 

Second, I thought that there was a lot of buck passing: submissions for the court and bundle documents were not ready for the hearing, varying reasons for which were proffered; the Local Authority implied the Health Board had not apprised them of their proposals to enable the LA to form a view of their position on funding; the lead nurse appeared to blame the care home (which, at other times in the hearing, was described as ‘exemplary’ in their care practice) for not providing timely information to inform the options appraisal; the treating clinician seemed to ‘expect a best interests meeting to be arranged’ but took no responsibility for this himself, despite being designated the decision maker by his employing organisation. All in all not very edifying. 

At 12.47 the judge returned to the hearing (I had stayed logged in throughout, as I was never sure when breaks were going to end and parties return to court). At this point it was just me, the judge and her clerk in the courtroom. DJ Howells said ‘I hope Dr Martin is enjoying observing all of this’, which made me laugh (though I had my microphone off of course). It was certainly a spectacle – and the fact that David himself was not in any distress helped me, at least, to feel more astonished than angry at the situation. 

Parties returned to the courtroom and it was agreed that there would be a round table meeting over lunch, including all lawyers, to consider all options. 

At 2pm we resumed. My notes read: “Robert Goodwin looks thoroughly fed up. Judge asks Emma Sutton ‘where are we?’”

Emma Sutton, as counsel for David, said: 

We have agreed a way forward. There is a gap that needs to be filled. There will be a meeting including [treating clinician] and Local Authority and it’s agreed that an occupational therapist needs to be involved for an assistive technology assessment. We’ll consult Epilepsy Excellence Centres regarding alternatives for care. A possible expert witness – it depends. Then the procurement team needs to be involved regarding devices to see what they can provide. The Lead Nurse is then to provide a pros and cons document including safety, accuracy etc. Then a round table meeting and further court hearing to be built around that. There is a pot of money for additional care now in place [the 60:40 Health:LA agreement from earlier]. Timescales have not yet been decided. 

The judge responded (very charitably I thought!) by thanking everyone for “the collaborative approach to proceedings.”  She said: :”It seems to me there is a measure of agreement that this should have been done, but there are pressures on people’s time, it’s not deliberate and people ran out of time.”

A further break between 2.15 and 3.15pm allowed the drawing up of the terms of the order from this hearing, including extending the standard authorisation for the VMS, and dates for different people for various tasks to be completed. A round table meeting is planned. 

Of particular importance, I thought, was the agreement for the lead nurse to provide, as part of the Health Board’s proposal, details for how the VMS would be used, were it to remain in place. It was evident from this two-day hearing that this had never been planned – it was not specified exactly when to use it (though the lead nurse clarified ‘when asleep’ there was confusion whether it was used ‘at night’ and when David was ‘in his room’ even during  the day if asleep); or how to record when a seizure was detected by the VMS as opposed to other means, such as staff being in the room with him (though some records did state ‘observed on video’ it wasn’t known whether this was consistently, and therefore reliably, recorded). The lead nurse had earlier confirmed her view that she would be ‘mortified’ herself, if she was being ‘watched all the time’. She clearly empathised with the intrusiveness of being watched on video in your bedroom. Even more important then, to ensure that any future, court-authorised observation is proportionate and deployed in a carefully monitored and reviewed manner. 

Final Thoughts

I have observed around 15 remote hearings now across the pandemic period. None has been as chaotic as this – with respondents not being organised in their communications with each other in preparation for court and court orders simply not being followed. A crib sheet of preparation tips for Trust employees appearing at the Court of Protection would be a good idea! Certainly, for this hearing the following would have been helpful:

  • Ensuring that – and being able to demonstrate – that you have meticulously endeavoured to include all relevant people in Best Interests meetings and decisions for P, checking the MCA 2005 for guidance if you are unsure about who this should be (e.g. s4(7) Best Interests decisions and who should be included). In this case David’s family and his RPR were not consulted at appropriate times throughout.
  • The person making the subsequent Best Interests determination (in this case we were told that David’s treating clinician was the ‘decision maker’ and the Lead Nurse was producing the options appraisal) should have considered all relevant people’s voices to produce an options appraisal document in readiness for the court hearing – and be able to demonstrate that this consultation process had been followed. 
  • Referring back to any previous judicial orders in earlier hearings – well before time – and ensuring they are adhered to. This could be facilitated by liaison between parties to chase up required information for documents and to establish agreement or highlighting of areas of ongoing disagreement in readiness for the court hearing. I wonder whether, sometimes, a reminder phone call would be better than an email!
  • Circulate all documents to be included in the court bundle by deadlines ordered to enable all parties to ‘read and digest’ (as noted by DJ Howells) prior to the court hearing. 
  • A willingness to see the ‘wider-picture’ (or ‘holistic’ picture as David’s parent put it) about a person’s needs and care: that our lives are a balance of risks, including for people who do not retain capacity for certain decisions in their lives. 

For David, it felt as if an appearance of belt and braces was wanted in his care (i.e. being watched at all time), without the evidence to demonstrate that this reduced risk of harm. So, we could be looking at an invasion of David’s privacy without the added safety that was it was designed to guarantee: an absence of due process and an outcome that did not do what it said on the tin.

I hope to be able to attend the – hopefully – final hearing which is planned for the 15th or 16th July 2021. 

Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is part of the core group of the Open Justice Court of Protection Project and has published many blog posts about hearings she’s observed (e.g. here and here). She tweets @DocCMartin

 [1] As usual, I have attempted to render what people said as accurately as possible, but it’s unlikely to be entirely verbatim since I have to rely on my note-taking skills during the hearing, being forbidden to audio-record.

Photo by Steve Johnson on Unsplash

Happy First Birthday to the Open Justice Court of Protection Project

Celia Kitzinger and Gill Loomes-Quinn, 15th June 2021

One year ago today, on 15th June 2020, we launched the Open Justice Court of Protection Project, a child of the pandemic. 

It was born of our passionate belief that “publicity is the very soul of justice” at a time when it seemed that the public health emergency was closing down the opportunity for people to observe the court in action.

Before the pandemic

We’d both had the experience of walking into courtrooms to observe hearings as members of the public.  Serious medical treatment cases have always been held in public.  As part of her work with the Coma and Disorders of Consciousness Research Centre, Celia had previously attended around 20 hearings in which judges made decisions about whether or not to continue life-sustaining treatment for people in vegetative or minimally conscious states.  Gill had spent a month of 2017 in London observing hearings in First Avenue House as part of her PhD research – many (like the one she blogged about here) concerning Deprivation of Liberty.  

These hearings concern fundamental human rights issues: the right to life, the right to family and private life, the right not to be arbitrarily deprived of liberty.  Gill wrote:

For disability rights activists, the transparency agenda affords us new opportunities to strengthen and inform our activism. So much of our experience of oppression – of discrimination, and of bureaucratic intransigence – happens behind the closed doors of doctors’ consulting rooms, or of local government offices. But here, in the Court of Protection, it is played out before the authority of the court, and now, before us – the public. Shining a light on collective injustice might be the first stage to challenging and changing it – if we can seize the opportunity.”

Before the pandemic we had found the doors of the Court of Protection wide open, and now it seemed they would be closing again. 

Closing the courtroom doors 

On 23rd March 2020, after the Prime Minister’s address to the nation, the Lord Chief Justice announced that (with urgent exceptions) “no hearings that require people to attend are to take place in any County or Family Court until further notice”.  

On  31st March 2020, Mr Justice Hayden reiterated that guidance for the Court of Protection and published a protocol for remote hearings (via phone or video-link). The template order states  they “shall take place in private” and any previous transparency order (permitting public access) “shall be disapplied”.  

For remote hearings, Mr Justice Hayden considered the court rule making hearings public by default (Practice Direction 4C) to be “unworkable”. He considered that the right to freedom of information could lawfully be restricted in this way since it was necessary for the protection of public health (Article 10(2)).  

But as Vice President of the Court of Protection, Mr Justice Hayden is deeply committed to transparency, and even as he (in effect) closed down public access to the courts, he included a section in the Guidance reaffirming the importance of transparency, with the opening sentence:  “The culture of the COP is one of transparency, and I am determined to maintain this insofar as possible” (paras. 54-64).

He left open the possibility of public access, despite the new default “private” nature of all hearings: 

In each case active consideration must be given as to whether any part of any remote hearing can facilitate the attendance of the public, if so Practice Direction 4C may be applied and the transparency order reissued.” (para. 59, Guidance 31 March 2020)

It was that ‘loophole’ (that’s how it felt) that we exploited in setting up the Open Justice Court of Protection Project.

Launching the Project

On 17th March 2020, Celia attended the first ever remote hearing in the Court of Protection, held over Skype for Business.  She did so not as an “observer”, but in a voluntary capacity to support “Sarah”, whose father was at the centre of a serious medical treatment case. It was a brutal experience in which an already deeply-distressing situation for Sarah was made much worse by use of remote technology.

Horrified by the idea that future hearings would be equally alienating and distressing for family members, Celia decided to try to observe other remote hearings – and succeeded, against the odds, in mobilising the “Transparency” section of Mr Justice Hayden’s Guidance to gain entry to 19 hearings in May 2021.  

This took huge persistence and determination and the willingness to deal calmly with frequent rebuffs.  She sent over 100 emails, and had more than 30 phone calls with court staff, to gain access to these 19 hearings.  The request to “observe” was often misheard over the telephone: “You want to what?  To adjourn?”.  Once the request was understood, she was usually simply told that hearings were “private”.  There was correspondence from some judges who said the same thing. She was cross-questioned repeatedly about why she wanted to observe and had repeatedly to explain and defend the principle of open justice (to the judiciary!).  Celia blogged about the first of these 19 cases (it was before Mr Justice Hayden), and tweeted about others – and we quickly realised that there was a surprising amount of public interest, at least from our own followers on social media.

It also became apparent that remote hearings potentially offer increased access to the court.  People don’t have to travel to attend.  We can watch hearings across England and Wales from the comfort of our own homes.  Far from closing down open justice, the pandemic had opened up a new means of supporting it.

Gill suggested a pandemic project: “Let’s create our own website, blog about some hearings, and encourage a few others to do the same”.  We invented some “aims” for the project, created an email account, set up a website, wrote a “welcome” page and pressed the button to launch it. And so the Open Justice Court of Protection Project began.  

We said:

A key aim of the project is to raise awareness of the work of the Court, and its social impact. Blog posts covering observations by Public Observers, analyses of published judgments, and other social and legal commentary will be at the heart of how we go about achieving this aim. (Welcome page, 15 June 2021)

We had no funding, and no institutional backing (then or now).  We were just two people with experience of the Court of Protection, who cared passionately about open justice in a court which makes draconian decisions in relation to the human rights of some of the most vulnerable people in society.  We imagined the Project would be something of a niche interest. 

We had some time to create a project like this because many of our usual activities had been cancelled (or “postponed’) due to the pandemic – and at that point it was widely-believed that life was simply ‘on hold’ for a few months and that we would give those talks, attend those conferences, run that training, meet those students in person, after a short delay.  We assumed that things would soon go back to ‘normal’, we’d get back to our usual business, and our Project would have been a brief intervention to support transparency at a particularly challenging time.

Two weeks later, we were forced to reassess.  We were (as we said) “overwhelmed by the response, as more than 70 people had contacted us for help with observing hearings.  And three family members involved in upcoming Court of Protection hearings had also emailed, asking whether we would observe ‘their’ hearings. 

Within the first two weeks of the Project, by the end of June 2020, we’d published seven blogs based on public observations of court hearings: by two future barristers (here and here), a third sector worker, a speech and language therapist,  an MCA trainer, a nurse, and a family member of someone with an impairment in the functioning of mind or brain. 

On 1st July 2020 we published the first of our ‘collective’ blog posts. Seven people who had observed the same hearing (seven members of the public observing simultaneously was virtually unheard of back then!) were welcomed by Mrs Justice Lieven who  “thanked us for attending … and pointed out that it’s not “open justice” if nobody comes”.  We were a varied bunch, including a clinical psychologist, an academic lawyer, and a family member currently involved in an “intimidating” COP hearing of his own.  During July 2020, observer-bloggers included a trainee solicitor, a case manager, a social worker, a DOLS Manager, and a trainee IMCA.  We were realising the range and scope of interest in observing these hearings.  The Project was turning out to be less ‘niche’ than we’d thought.

During this period, we were confronting multiple access problems – including four days during which the email to request access to hearings at First Avenue House had been mistyped on their webpage (so emails were bouncing back) and contact details were missing from the listings for many hearings in regional courts.  We had somehow created the impression that we were a big organisation with the resources and connections to solve access problems for members of the public. All we could do was email the courts on their behalf.  

We learnt from the blog posts (and informal feedback) that once people overcame the hurdles of access, they were struggling to understand what was happening in court.  It became apparent to us how much we already knew about court process and procedures, and that observers without previous experience in court were struggling.  The barriers to open justice are not just barriers to access, but extend to legal jargon and obscure court procedures.  As speech and language therapist, Olwen Cockell, wrote in one of the earliest blog posts we published: “I could see justice being done.  I could hear justice being done.  But, hand on heart, I can’t say I fully understood the justice being done.”

So, we enlisted the help of some lawyers and published some ‘explainer’ blogs: A basic guide to the Court of Protection(Alex Ruck Keene);  Who’s who in the Court of Protection? (Victoria Butler Cole QC) and what’s in the ‘bundle’ (Kyle Squire).  Celia wrote a blog about the reporting restrictions order (here), because several observers simply refused to write blogs, believing they were not allowed to say anything at all about the hearings.  We’ve continued to develop these ‘explainer’ blogs, because being in court without understanding what the judge and counsel are talking about can feel a bit like being a child having adults talk ‘over your head’ in sometimes deliberately obfuscatory language, designed to exclude you.  We also tried to ‘humanise’ the court, by publishing a more ‘personal’ account from a Court of Protection solicitor about her lived experience and its relation to her professional expertise.  

But what most struck us two weeks after pressing the ‘launch’ button, was how positive observers were about the court – most especially in their appreciation of the huge emphasis the Court places on the autonomy of the disabled people at the centre of its work, and of individualised, person-centred decision-making. One observer (who herself advocates for a family member) said of the hearing she witnessed:

The law enabled a person with a learning disability to access the same rights and healthcare as any other citizen. This gives me a huge sense of relief that my family member will be safe and listened to with these structures in place, and free to live the life he chooses.”

Others made similar points:

My main focus is that the person remains at the centre of everything. It was so reassuring to see that this also was the primary focus within a formal court hearing for Mr Justice Hayden”  (Sara Shorten).

What I saw happen in this case, was a serious focus on getting things right for the individual person at the heart of it all” (Meriel Scott)

 “Mr Justice Williams maintained unwavering focus on what is right for P … I left feeling reassured that person-centred decision-making, an issue I feel strongly about, prevailed.”  (Upeka de Silva).

In some ways this was unsurprising: we have both seen good practice in the court.  In other ways, it wasn’t necessarily what we were expecting – especially given our own critiques of some of the underlying principles of the Mental Capacity Act 2005 (particularly the concept of ‘best interests’) and our own experience of some very bruising encounters in the Court of Protection.  It was also becoming very clear that these blog posts, written by members of the public, presented a version of the Court of Protection that is very different from media representations: they were more personal, more reflective, and more engaged with the challenges of how to do the ‘right thing’ for the person at the centre of the case.

A year of open justice

A year on, we have a much bigger project on our hands than we ever predicted and no indication that we can stop any time soon.  

We simply didn’t predict the degree of interest and enthusiasm the project has stimulated, or the extent to which the project has encouraged and supported people from a range of  backgrounds (including health and social care professionals, lawyers, and people who are themselves engaged in ongoing proceedings in the Court of Protection) to observe the court in action, and to share their experiences and their reflections via our blog and social media.   In the past year we have published 139  blog posts featuring 97 different authors. As it became clear that hundreds – now thousands – of people would be involved in our Project (way beyond our original estimation of maybe a blog every couple of weeks or so), we also had to develop a formal ‘policy’ about what we would and wouldn’t publish (here) and some guidance for bloggers (here).

Recently we’ve also developed tweet threads (collected as pdfs on our web page here) as a method for reporting on some of the hearings we observe.  Initially this was simply a means to get something out publicly about a hearing when time-pressures precluded writing a blog – but we realised subsequently that tweet threads are a mode of communication which turns out to be extraordinarily effective in promoting dialogue and discussion with people who’ve not previously engaged with the Project.  (Note: the pdfs on our webpage don’t include replies to tweets – to find them, and appreciate the engagement they promote, copy some of the text into the search facility in Twitter, to locate the original tweet thread and responses to it).

The day-to-day work on the Project includes our own observations of the Court of Protection in action, editing and publishing blog posts and tweet threads, maintaining the social media presence of the Project and mentoring would-be observers, who sometimes need considerable support (as described by one contributor who mentored undergraduate students to observe).

Additionally, over the past year we have given 18 talks, seminars, and conference papers. These include: participating in a conversation about remote hearings with COPPA North-West (branch of the Court of Protection Practitioners’ Association); providing continuing professional development training for incoming judges to the Court of Protection via the Judicial College; contributing to the ‘Transparency Review’ being undertaken by the President of the Family Division of the High Court, Sir Andrew McFarlane, and presenting our work to the conferences of the Society of Legal Scholars and the Socio-Legal Studies Association. 

In  May 2021, we invited Claire Martin and Kirsty Stuart to join the project.  Claire is a clinical psychologist based in Gateshead who works with older people; and Kirsty is a solicitor with Irwin Mitchell. Both had become involved with the project via writing for our blog, and subsequently giving talks about their experience as public observers. Both bring a wealth of complementary expertise, experience, and interests to the project. 

The virtual ‘home’ of the Open Justice Court of Protection Project is our website. This is where we share details of upcoming hearings in the Court of Protection (‘Featured Hearings’), host supporting information and guidance for observers, including the resources in our  Public Observer Wiki and our Hearing Feedback Form, designed to support observers in structuring and making sense of their observations.  It’s also where publish our blogs and tweet threads.

The ‘reach’ of the website has surpassed our most optimistic expectations.  During this first year of the Project, it’s had over 111,000 views from over 55,000 unique visitors, across more than 100 countries. This has enabled us to put into practice one of the key aims of the Project – that of supporting members of the public not only to gain physical (or virtual) access to the Court of Protection, but also to understand and engage critically with its work as informed ‘citizen journalists’. 

We were delighted that in April 2021, the Open Justice Court of Protection Project was awarded the Mobilizing Research into Action prize in the Emerald Real Impact Awards 2020. It was brilliant to see the Project recognised in this way – and a great tribute to the contributions of the thousands of people who have been involved with it since it began: by engaging with the Project via social media; by observing the Court of Protection in action; by writing about their experiences for our blog; by sharing their expertise via our ‘explainer’ blog posts; and by inviting us to contribute to seminars, discussions and other events.

Reflecting back on the last year, there are four achievements we’re particularly proud of:

1. Changing the culture of the court

The Court of Protection now expects and prepares for scrutiny by public observers. This is especially so for Tier 3 judges hearing cases in the Royal Courts of Justice and judges at First Avenue House in London. Outside of London, judicial experience is more patchy (because public access is harder), but it’s many months since a would-be observer has been told that all COP hearings are ‘private’ or cross-questioned about their motives for wanting to observe.  

When we started observing we were offered essentially ‘fly on the wall’ status – i.e. the court just went about its business pretending we weren’t there.  Now, by contrast, there’s almost always an opening summary (usually from the applicant counsel, sometimes from the judge) about the background to the case and the key issues to be addressed. This is useful not just for us as observers but also for lay participants:

It’s good practice to have to think ‘how can I summarise this case in 2 minutes’ at the outset. I think it helps to do that in most cases anyway, but a public observer’s presence means we are more likely to have thought about it first. It aids the judge’s understanding and just as importantly the understanding of non-lawyer participants/litigants.” (Barrister)

We’re also now increasingly sent position statements on request: these skeleton arguments which outline the positions of the different parties at the beginning of the hearing are invaluable in supporting our understanding of what is going on.  We’re hearing now that, knowing that their position statements may be requested and read by members of the public, some lawyers are trying to write them with more clarity and careful exposition of the law.  

One barrister tells us that the presence of observers has meant a more rigorous focus on fundamental legal principles during hearings: 

There has been real enthusiasm for public observers in the Court of Protection. It has been seen as a real opportunity to counter the perception of it as a secret court. As a result, we have been taking the time to expressly set out the first principles and legal principles which should govern everything the Court does. This exercise, which was prompted by a desire to make the proceedings accessible and easier to follow has actually meant that as the principles are pushed to the forefront of everybody’s mind, they are more rigorously and consistently applied.” (Josh Hitchens, barrister)

Another barrister, reflecting on the difference it makes to have observers in court, says: 

“It absolutely changes things – practitioners and judges are less sloppy I think, and take the time to properly set out the facts, the law and judgments when they might otherwise refer to things in a more shorthand way.  This, I think, is a good thing since it means that anyone participating or watching (often family or even P themselves) can actually follow what is going on far better.  It means we are all on ‘best behaviour’ essentially!”  (Barrister)

2. Building a role as ‘critical friends’ to the court’s transparency agenda

We take as our starting point that (as Mr Justice Hayden says) “the culture of the COP is one of transparency”– meaning that the principle of transparency is a judicial commitment and aspiration.  Putting that principle into practice requires our help – since obviously justice is not open or transparent if we can’t get through the door of the (virtual or physical) courtroom, or don’t understand what’s happening when we do.   

Supporting the court in its commitment to the principle of transparency means both celebrating the success of open justice, as in many of the blogs on our website written by people who’ve attended hearings, and – equally – identifying and reporting the problems the court appears to have in implementing this principle. 

We know that the court is under-resourced, and working hard (especially during the pandemic) to deliver justice as speedily as it can, against a backdrop of challenges in relation to health and social care.  We know that public observers create more work for the court: starting with the processing of emails from observers to court staff, and often culminating in  a last-minute flurry of emails between counsel and judge.  Lawyers need to be prepared to anonymise documents, prepare an oral summary and a transparency order, inform P and P’s family that observers will be present, sort out the video-platform link, or – with telephone hearings -individually dial us into a conference call (it’s often the judge who does this).  And time is taken up in court with additional explanations of legal concepts for the benefit of observers, or by reading out material from documents to which observers do not otherwise have access. There is clearly a cost to implementing the principle of open justice in practice. We do not seek to minimise the fact that transparency is a burden on the court

Since, however, the principle of open justice is – in the first place – a judicial commitment (albeit one we support) and one the courts have historically held to be crucial in a democratic society, we are surely entitled to expect that the courts will do whatever they can to bear that burden graciously.  It is the judiciary who have championed the idea that “open justice lets in the light and allows the public to scrutinise the workings of the law, for better or for worse,” as Toulson LJ put it.  Or, as  Lord Dyson JSC said, the open justice principle is not a mere procedural rule.  It is a fundamental common law principle.” When we ask to observe hearings, we are doing our bit to support and make concrete reality one of the principles the judiciary has advanced as core to its practice.  

Balancing our sense of ‘entitlement’ to attend public court hearings with the practical reality that we are frequently excluded from them is at the core of our engagement as ‘critical friends’.

3. Scrutinising expert evidence

Our most frequently read blog post is  “When Expert Evidence Fails” (viewed almost 5000 times). In essence, a consultant psychiatrist gave evidence that P, a 68-year-old care-home resident with dementia, lacked capacity to make her own decisions about engaging in sex (and various other decisions).  The blog post describes – with examples of dialogue from the court hearing – how his testimony simply collapsed under cross-examination.  

When the case returned to court three months later, with a different expert witness, it was deemed that P did in fact have the mental capacity to engage in sexual activity.  As we pointed out, the tragedy is that P “who has a degenerative condition – so that time is of the essence for decision-making – has lost a whole year (during pandemic lockdown) of intimacy of any kind with her chosen partner. A year that she can never get back.”  The human cost of expert witnesses getting it wrong in the Court of Protection is huge.

We also asked an expert witness to justify and explain the statistics he presented in court concerning the dangers of home birth (he blogged about this here) – since the published judgment quoted him without providing any references to his sources.  We sometimes get the impression that the court is overly influenced by the particular individual expert before them, when other experts may have different interpretations of the evidence or draw on different evidence – and there is a problem, too, with using the same experts over and over again.

The most egregious case of expert evidence we have seen in the Court of Protection  concerned a neurologist, Dr Pullicino – whose evidence the Court of Appeal said: “lacked every characteristic of credible expert evidence and it is not surprising that the Judge rejected it as effectively worthless. His key evidence relied on 3 minutes of video recording of P, whose notes he had not examined, on the basis of which he made unsustainable diagnostic claims (as analysed in a blog post here).

After watching the hearing, and doing some background research, Celia wrote a letter of concern to the General Medical Council about Dr Pullicino on the grounds that he caused harm to the patient (and to his family) and damaged public confidence in the medical profession.  They are currently investigating this.

So, open justice means exposing not just the lawyers, but also the health and social care professionals who provide evidence to the court (especially those who do so as ‘expert witnesses’) to public scrutiny and to the possible consequences of that.

4. Improving legal literacy and knowledge of the COP

We’ve both learned a lot about the law through watching Court of Protection hearings, and so too have the health and social care professionals, and aspiring lawyers, who have acted as public observers. Observation often has important benefits for continuing professional development:

I have found the whole observation experience very beneficial.  The googling, looking up of legislation, reading up of quoted case law – both during and after the court attendance – has given me a crash course in legislation, that I now realise, I only thought I understood. Listening to a talk about how the Mental Capacity Act is implemented in the courts is one thing – actually observing it as it happens is very different!” (Louise Burrell, social worker)

I think the most important learning for me from being able to observe this hearing, is the way it has again, allowed me to watch the Mental Capacity Act  2005 ‘in action’ and understand how a senior High Court Judge … works through the process of reaching a best interests decision. I’m also able to take away with me some ideas that I can incorporate into my own practice when completing best interests assessments myself in future.” (Astral Heaven, DOLS Manager)

For my part, I left [the hearing] with a resolution to examine my own practice, and to consider deeply the motivations for the clinical decision-making forums (e.g. Multidisciplinary Team Meetings) I am part of that do not physically place the person or their family at their centre.” (Caroline Barry, Consultant in Palliative Care)

“For me as a student of health care law, this experience of observing the Court of Protection in action illustrated the reality of applying the ideals of the Mental Capacity Act 2005 to real life.  In theory, it’s easy to say that decisions should be made in P’s best interests, but even when – as in this case – everyone agrees what that is, judges have to deal with real-world issues like which rehabilitation unit would be suitable, how to find one with a vacancy in a particular area, how to manage a situation that could change unpredictably before the right rehabilitation unit is available, and how to ensure that the local authority and others responsible for P’s care keep up the momentum in finding the right treatment for her.  Understanding the Mental Capacity Act 2005 is not just about analysing black letter law and statutes and discussing it in the abstract. I’ve learnt that the Court of Protection’s role is also about managing the concrete particular details of a particular P in the specific conditions of her life and in the context of over-stretched health and social care services.”  (Lucy Williams, aspiring solicitor)

Through our social media presence and blogging, we’ve created a much broader awareness of the Court of Protection and what it does: our hashtag is #NotSecretCourt.  The vast majority of people don’t (and won’t) attend hearings: they learn of the court’s work only through published judgments and media reports.   

Few members of the public ever read published judgments – and they are in any case post-hoc polished explanations and accounts for the judgment, which can obscure the messy process by which the judgment was arrived at – the dead ends explored, the arguments from counsel that didn’t work, the questioning that went nowhere, the thinking-aloud reflections of the judge pondering the case. It is precisely seeing how the decision is arrived at, and the real-life constraints within which the court must work, that is so illuminating.  It is of course crucial for open justice that judgments are published – we wish more were! – but they are no substitute for observing a hearing.  

Journalists are supposed to be the ‘eyes and ears of the public’ – but comparing media reports of the cases we observe with our blogs about the same cases, we are struck by the huge differences.  Compare for example the media reports of the case of the woman with agoraphobia ordered by the court to give birth in hospital with the blogs from our contributors, who included a woman with agoraphobia, a medical ethicist, and some midwives.  A journalist cannot be expected to see or hear court proceedings (or read a judgment) from the perspective of a midwife, a consultant obstetrician, a doula or a person with agoraphobia – each of whom brings her or his own unique personal and professional experience to bear, and each of whom can speak authoritatively to a specialist constituency, able to engage with the issues with expertise and sophistication.

We believe that open justice is vital in the Court of Protection  not least because of the  human rights issues involved.  Over the course of the year we’ve covered, for example:

Covid-related issues:  Is it in P’s best interests to be vaccinated against covid (yes, here; no, here)? Are a care home’s rules about visiting arrangements during the pandemic a violation of P’s human right to family life (here and here)?

Life-sustaining treatment:  Should P continue to receive clinically assisted nutrition and hydration? (yes, here; no, here)  Should P have their leg amputated against their wishes when not amputating will mean that they die? (yes, here; no, here)

Choices in childbirth:  Should women who don’t want to give birth in hospital, or be induced, or have caesareans, be compelled to do so, by force if necessary? (See one lawyer’s take on this here.) Is it in the best interests of a learning disabled woman (wishes unascertainable) to have a caesarean? (here)

Engaging in sex: Does a woman with dementia have the mental capacity to engage in  intimate relations with a man in her care home? (here)  Can P can be provided with support to access a sex worker? (here)  And we’ll shortly cover a case that originated in the COP and is soon to be heard in the Supreme Court, live streamed): does capacity for sex include the understanding that the other person must have the capacity to consent to sex, and does in fact consent, before and throughout the sexual activity? 

Deprivation of Liberty: Does P have the mental capacity to decide where he lives or can he be deprived of his liberty, against his wishes, in his own best interests? (here)  If P is deemed not to have capacity and says he’s “incarcerated against my will” and wants to return home, how long and on what basis can the court keep him in what he calls a “prison”? (here and a similar case here)  If P isn’t able to express her wishes, but a family member who loves her wants to care for P at home, on what grounds can the state keep her in an institution? (here)

When can the state compel P to take medication that he’s refused  by hiding it in his tea? (here); or restrain P to ensure he or she has the surgery they’re resisting? (here and here); or invade P’s privacy by keeping a video-monitoring device on him day and night? (here)

In a democratic society, these sorts of decisions for vulnerable and disabled people should rarely be made behind closed doors.

The future

We’re extremely pleased with what we’ve achieved so far in such a short space of time.  We’re also exhausted!  Happy, exhilarated and excited, yes.  But also exhausted.

We’re still unfunded: we paid out of our own pockets for the (modest) costs of website hosting and logo-design. We’ve done all the work of building and maintaining the website ourselves. Five days a week, it’s still one of us who scours the listings for the Royal Courts of Justice, First Avenue House and the regional courts – correcting the errors, formatting them consistently, tweeting them to the three thousand people who follow us on Twitter, and selecting the most ‘interesting’ or ‘accessible’ for ‘Featured Hearings’.  We’re not looking for funding (we value our independence) but it does mean there’s only so much we can do.   We’re thrilled that Kirsty Stuart and Claire Martin have joined us.

We didn’t really plan the achievements of our first year – we reacted to circumstances, pushed on various doors to see which ones opened, took the opportunities that presented themselves, and pursued the issues we cared about most.  I imagine next year will be much the same, but with more of us actively involved in the core group.

We’re celebrating how much we’ve achieved and looking forward to the challenges of the future – which will of course include how to manage open justice when the courtroom buildings are finally fully open and hearings move back, in whole or in part, into physical rather than virtual spaces.  We’re hoping the courts will work with us to continue to facilitate open justice after the pandemic as they have done during it.

Happy First Birthday to Us!

Celia Kitzinger and Gill Loomes-Quinn are the co-founders and co-directors of the Open Justice Court of Protection Project. Celia tweets as @kitzingercelia and Gill as @GillLoomesQuinn

Photo by Stephen Wheeler on Unsplash

A junior doctor watches his first hearing

By Sam Elcock, 14th June 2021

I was inspired to dial in to a Court of Protection hearing after hearing Celia Kitzinger speak about the Open Justice Court of Protection Project at a presentation where I work.

I’m a junior doctor working in Birmingham and have yet to have any involvement with patients or cases that have gone to the Court of Protection. I was however aware of the concept of complex cases where there may be a dispute about a patient’s best interests which end up in a court of law. 

The idea of being able to watch a hearing remotely via MS Teams made things much easier for me, as with a busy work schedule it’s quite hard to plan attendance at short notice.

On a rare day off work with no other plans, I saw a tweet from @OpenJusticeCoP about a hearing before Mr Justice Hayden, who I knew had presided over the Alfie Evans case as a High Court judge.

It was Case No. 13748686 Re: B before Judge Hayden at 11.30am on 27th May 2021.

I emailed the courts that morning and very quickly received a link to the MS Teams meeting, along with a last-minute change of timing for the case – it had been listed for 11.30am but we were told it would actually now happen at 2.00pm.

At this point, I didn’t know what the case was about, so at 2.00pm I dialled in with an open mind.

There were about 10 people in the ‘room’ and it was a solely virtual hearing. 

It wasn’t immediately clear who was who. The court clerk then appeared and after a roll call of those present, introduced Mr Justice Hayden.

 Even though my camera and microphone were off, I wasn’t quite sure what to do when she announced, ‘court rise!’. I stayed seated with my cup of tea, as did everyone else on screen to my relief. 

The first barrister then started presenting her argument, and at this point I still had no idea who was who or what the case was about. Mr Justice Hayden rather quickly interrupted her, and said words to the effect of: 

As you may know, this court is open for members of the public to sit in on who may not have the information we have before us about the case. Please could you start by introducing the case and providing a background of events to date.’

The hearing was about P, a young woman with Down’s Syndrome whose parents had divorced. From what I could make out, this was the case’s first appearance under a ‘Tier 3’ (High Court) judge, but the exact outcomes both parties wanted remained slightly unclear. 

From what I could gather, there was a differing opinion between the mother and father as to how much time P should spend with each, at an activity centre, and also with regards to carers who would support the father with P’s intimate hygiene needs. 

Various pieces of evidence were presented by both sides of the court, including capacity assessments about P’s thoughts and also occupational therapy assessments about Ps needs. 

The mother and father were present throughout the court, but remained silent (as did I).

The capacity assessment was particularly interesting for myself as a doctor, as these are assessments I do on a daily basis. 

The hearing lasted roughly an hour and adjourned without the bang of a gavel like I was half expecting. There was no clear conclusion to the outcome at the end, other than P should spend as much time as possible with her elderly paternal grandmother.

What struck me most about the case was how personable Mr Justice Hayden was. He took a particular interest in the activities at the activity centre P wanted to go to with her friends, remarking how beneficial an ‘Adult disco’ would be for someone like P.

There were a surprising number of humorous moments and on the whole the court was a lot less serious and formal than I was expecting. 

The hearing ended very promptly without me having to say anything or even introduce myself on the call. 

Overall, it wasn’t quite the ethically challenging case I was expecting but the experience of being able to watch a Court of Protection hearing was fascinating. 

As a doctor, I’d now like to observe another hearing which is perhaps more medically focused.  However, I find it quite exciting how cases are published last minute and you don’t quite know what’s going to be presented. 

It was very beneficial for myself as a medical professional, and would encourage others working in healthcare to try and observe similar hearings. 

I hope that I never have to be a witness at a Court of Protection hearing. However having the experience of observing one at this stage has given me a good idea of what to expect should it ever occur. 

Sam Elcock is a Foundation Year doctor in Birmingham.  Originally from Liverpool, he graduated from the University of Leeds in 2020.  Previously serving as a reservist, he is now in the Regular Army and is undertaking general medical training with the intention of becoming an Army GP.  He tweets @Samelcock97

Photo by Hush Naidoo on Unsplash

Evidence of risk of planned home birth

By James Walker, 11th June 2021

Other experts who have contributed to this Project’s discussion of the Court of Protection case of An Expectant Mother [2021] EWCOP 33 are not alone in the misunderstanding of the data surrounding home births. This is largely due to the fact that the presentation of the data is influenced by underlying beliefs of those presenting it. There are very few good trials into home birth and the cohort trials are from different parts of the world and not necessarily well controlled or detailed in their information. The meta-analyses are therefore flawed due to the mixture of the case cohorts included as well as coming from different clinical backgrounds.

It is often stated that home birth is safe for the low-risk woman. No birth is safe: safety is not binary, it is a continuum, and it changes over time. Risk is poorly assessed in most cases and is assessed as higher or lower depending on your starting point and your own beliefs. None of us is impartial. 

When considering home birth, there are four things to consider:

  1. the underlying risk and the awareness that this may change
  2. the environment where the birth will take place
  3. the difficulties in transferring a woman to hospital if required
  4. the wishes of the mother.

Fundamentally, it is the mother’s decision after she has had fully informative information to help her decide. If a woman with the mental capacity to do so decides on a home birth, then irrespective of the hospital staff views or feelings, there is an obligation to support this and provide midwifery input. 

I obviously cannot discuss the specifics of this case, in which I gave expert evidence, but it is fair to say that there were some concerns about obstetric risks to the baby but the emphasis of concerns was on the ability to transfer to hospital. This centred around the mother’s agoraphobia, and the effect it may have on her decision making.

The risks of an incident occurring for any individual birthing at home are not different from the risks of birthing in hospital, apart from the ability to monitor the mother and baby if there are concerns and the ability to transfer if required. So is not the home birth that is the problem, it is what you can do if something goes wrong. In many instances babies are lost or damaged during home birth due to slowness to observe deterioration, slowness to escalate and transfer to allow “rescue” to take place. 

The best UK figures on home birth are published here and are used by the NHS website: 

Perinatal and maternal outcomes by planned place of birth for healthy women with low risk pregnancies: the Birthplace in England national prospective cohort studyBMJ 2011; 343 doi: https://doi.org/10.1136/bmj.d7400 (Published 25 November 2011)

For transfers in labour or in the postnatal period, the study showed that 45% of primigravida are transferred: 35% before delivery and 8.9% after. For multiparous women the figures are  6.4% transferred before delivery and 5.2% after delivery. The figures were not much different for women giving birth in Freestanding Units or Alongside Midwifery Units,  demonstrating the risk is not home birth per se but primigravida pregnancy.  Many of the figures quoted by supporters of home birth do not differentiate between woman having their first baby at home and those having their second or more baby at home. That is why transfer figures are usually quoted as being a lot lower. 

Half of the reasons for transfer was failure to progress (17.9 of the 35.1%), then fetal concerns (8.2 of the 35.1%), desired pain relief (2.8 of the 35.1%) and other concerns. After delivery, the reasons were requirement of suturing the perineum (4.4 of the 8.9%), haemorrhage or retained placenta (3 of the 8.9%), baby reasons (0.9 of the 8.9%) and other concerns. 

Although emergency (urgent) ambulances were called in 11.5% of all primigravida, a “blue light ambulance” was probably needed in only 1% (my guestimate). The transfer times from decision to transfer to arrival in the obstetric unit was around 49 minutes on average.

The primary perinatal outcome was a composite of perinatal mortality and specific neonatal morbidities: stillbirth after the start of care in labour, early neonatal death, neonatal encephalopathy, meconium aspiration syndrome, brachial plexus injury, fractured humerus, and fractured clavicle. This composite measure was designed to capture outcomes that may be related to the quality of intrapartum care, including morbidities associated with intrapartum asphyxia and birth trauma.

The study showed that when correcting for pre-existing risk, primigravida had a 2.8 increased odds ratio of poor baby outcome (9.5/1000 or 1/100) compared with hospital birth 3.5/1000 or 1/300). This is largely due to the time taken to escalate the problem and transfer the mother. These figures are slightly worse than those quoted in court which were the unadjusted figures. 

This is the basis of the figures I used in my evidence as they are the best that are available for the UK and would be relevant in this case. 

To emphasise, the risks of home birth is not related to the incidents that occur but to the ability to transfer and rescue. 

James Walker is Emeritus Professor in the Department of Obstetrics and Gynaecology at Leeds University and author of Planned home birth. Best Pract Res Clin Obstet Gynaecol, 2017.

Photo by Beth Macdonald on Unsplash

‘No Entry’ – Open Justice at the RCJ

By Daniel Cloake, 10th June 2021

“It was on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying ‘Beware of the Leopard.’”

So reads the infamous line from The Hitchhiker’s Guide to the Galaxy to justify the assertion that the all-important plans had indeed been on public display.  I was reminded of this quote as I was traipsing around the Royal Courts of Justice looking for a Committal Hearing that purported to be held in public earlier today. 

The proceedings had been advertised by the Open Justice Court of Protection Project, which advocates for public observation and scrutiny of the Court of Protection.  Once described in 2006 as ‘shadowy’ and ‘the most secretive court in Britain’ by The Telegraph, great efforts have been made by the group to encourage members of the public (including health and social care professionals, law students, disability rights activists, academics, and families caught up in COP proceedings themselves)  to witness and report on what they see.

What caught my eye was that this was a Committal hearing, proceedings described by Macdonald J as ‘essentially criminal in nature’ (Para 9) which can lead to the imprisonment of the alleged contemnor – a serious exercise of power by the court and worthy of public scrutiny.

The general rule as laid out in the Practice Direction on Committal for Contempt of Court in Open Court (“PD’s”) states at 5(1): “All committal hearings, whether on application or otherwise and whether for contempt in the face of the court or any other form of contempt, shall be listed and heard in public.

Such is the importance of Open Justice to this exercise of power that whilst the court does have Jurisdiction to sit in private, at the conclusion of a successful committal application the court must sit in public and give its reasons (PD’s at Para 13(1)). Para 13(2) states in no uncertain terms:

There are no exceptions to these requirements. There are never any circumstances in which any one may be committed to custody or made subject to a suspended committal order without these matters being stated by the court sitting in public.

The cause list showed this hearing as being held over MS Teams. However it transpired that it was in fact ‘attended’ and the parties would be sitting in court at 2pm.  With that knowledge in mind, I doffed my face mask and made my way to Central London.

Unfortunately, upon arrival, the printed cause list on display at the RCJ still showed the case as being heard online.  I enquired at the aptly named enquiries desk and was given a phone number for the Family Division who I was assured would assist me with my request.  My phone tells me that the number was called a total of 8 times, going to voicemail after ringing out.  Re-enquiring at the enquiries desk led to the advice “They’re normally held in the Queens Building”… and off I went.

Arriving there I was very conscious of the time.  13.58.  Two minutes before I’d miss the start.  I could see Court 40 was sitting, could this be the one?  I peeked through the glass window on the door and googled the judge I was expecting (Hayden, J) so I could find an image to compare.  No, not him.

I took the lift to floor 1M and enquired at my second enquiry desk of the day.  “I’m here to observe the following case” I said handing over my notebook with the case number written on it.  A few moments passed while she tapped at her computer – “Yes this one’s being heard on MS teams” she said.  Ah.  I explained the situation and she disappeared round the corner to seek advice.  I look at my watch.  The seconds are ticking by.  She reappears.  “Court 45 on Level 1”.  I get back in the lift.

One final hurdle of the day – no, not a sign saying “Beware of the Leopard”, but one equally off-putting fixed within a permanent Perspex plaque. 

“NO ENTRY TO THE PUBLIC SAVE FOR ACCREDITED PRESS/MEDIA REPRESENTATIVES” 

With mortifying visions of proceedings being halted whilst I’m ejected, I catch the usher’s eye through the door and was helpfully directed to the public gallery at the back of the court.

The time was 14.07. The first time I have ever been late to a hearing.

I had as it turns out arrived at the half-way point – it finished some 8-minutes later.

The threat of committal had achieved its objectives” said Mr Justice Hayden, describing it “as absolutely the last resort”.  I had heard enough over the remaining eight minutes to speculate what may have occurred but certainly not enough to satisfy the requirements that reports should be accurate and fair. 

An inaccurate cause list, two enquiry desks, a phone that never answered and a sign that said No Entry.  I wonder if Arthur Dent would have been impressed?

Daniel Cloake is a blogger and news gatherer with a keen interest in law and the justice system. This post was originally published on his own site, “The Mouse in the Courtroom” (where you can read his many other blog posts).  He tweets @MouseInTheCourt

Image by Dennis van Zuijlekom from Ermelo, The Netherlands, CC BY-SA 2.0, via Wikimedia Commons

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