Avoidable delay 1 was caused by misinformation from professionals about the time after injury at which a PVS diagnosis can be made

In the face of family requests to let S “pass away with peace and dignity” eight months after her injury, there was a formal best interests meeting (13 April 2013), involving S's family and key members of the health care team, including the Mental Capacity Lead for Cumbria Partnership Trust, a Community Macmillan nurse and the patient's GP. At this meeting the family were told that S could not be diagnosed as being in a PVS until 1 year after the precipitating event. This is incorrect. The vegetative state cannot be diagnosed as permanent until 1 year after a ‘traumatic’ injury (eg, a blow to the head)—but this was not the right timescale for S, who had a ‘non-traumatic’ (anoxic or other metabolic) injury, meaning that she could potentially have been diagnosed as permanently vegetative after 6 months.ⁱⁱⁱ At this stage, the clinical team could have been compiling the necessary evidence for a court application. Instead, the ‘action plan’ in the minutes from the best interests meeting was to review diagnosis ‘closer to the 12 month stage’.

Avoidable delay 2 resulted from lack of advance planning for the legal application

Not only was the clinical team wrong about the timescale for diagnosing the vegetative state as ‘permanent’ for this patient, they also failed to plan ahead for the application to the Court of Protection. Even believing (incorrectly) that S could not be diagnosed as PVS until a year post-injury, they could nonetheless—given the views expressed by S's mother—have begun initial preparations for a court application and booked the relevant tests for the time at which they believed a firm diagnosis might be possible. This was not done. Instead a ‘wait and see’ and ‘plan another meeting/review’ approach appears to have been adopted with no sense of urgency in ensuring that the treatment being provided was in her best interests.

Avoidable delay 3 was inexplicable tardiness in obtaining independent expert assessments to confirm the patient's diagnosis

Although some tests (including the Wessex Head Injury Matrix) had been done between 6 and 12 months post-injury (and had indicated nothing higher than a reflexive response level), the additional expert diagnostic assessments the Court would need were not carried out until July–August 2014—2 years post-injury. This was in spite of there being no clinical reason for the delay and in spite of the family pressing for such assessments to take place as soon as possible. It was only after the results of this assessment (using the Sensory Modality Assessment and Rehabilitation Technique (SMART)) that S's multi-disciplinary team (MDT) agreed to ask the CCG to make an application to court. Tardiness in obtaining these tests meant that the team did not make this request until September 2014, more than two years after the initial injury.

Avoidable delay 4 was a delay of more than a year between the decision to make a court application and the date when the application was actually made

Although the multi-disciplinary team agreed on 18 September 2014 formally to request that the CCG make an application to the Court of Protection, this application was not actually made until October 2015, 13 months later. We are not sure when the CCG formally received that request, or when the solicitors were instructed (so it is possible that some of the delay may have been introduced by either the treating team or the funding commissioning organisation) but we do know that the case had been in the hands of the CCG solicitors for some time when S's family approached us for help in mid-July 2015—at which point we contacted the CCG solicitors directly to try to find out (on behalf of the family) what progress had been made. In subsequent correspondence, one of the solicitors acting for the CCG explained why the process of preparing an application can be so time-consuming:A difficulty that can be encountered with regard to acting for CCGs in particular is that, whilst they fund and commission the care, the care providers are separate organisations and the CCG therefore has no direct control over the medical records, and further none of the treating clinicians or medical practitioners are employees of the CCG. This means that the CCG has a coordinating role with numerous other organisations behind the scenes and it is necessary to liaise with each of these numerous organisations, such as multiple NHS Trusts [the letter names three for this case], GP surgeries, hospitals/nursing homes etc, to obtain the relevant records and to undertake investigations, which can be a time-consuming and unwieldy process. (Letter to authors from CCG's solicitor, 18 July 2016)

The CCG's solicitor also told us that work on preparing the case for court had been halted for some months while S was ill. The solicitors say this was occasioned by the nurses caring for S who had been asked to prepare statements for the application: they “contacted the CCG and explained that they would have to delay preparing their statements as S was very unwell and their time was needed to provide care, notwithstanding that the outcome for S was unclear” (letter to authors from CCG's solicitor, 18 July 2016). (Note: we do not have access to the nurses' perspective on this issue and it is not clear to us why they were not provided with the support necessary to complete this task in a timely manner.)

Given that this was a relatively straightforward case (with no disagreement between family and clinicians) one might reasonably expect completion of the paperwork for the court application to take no more than a few months (as it has done in other cases eg, Re D discussed below). The 13-month gap between the MDT's decision to refer to Court and the lodging of the application is simply unconscionable.

Avoidable delay 5: adjournment of the March 2016 hearing: an additional 2-month delay resulting from concerns about the quality of diagnostic evidence provided to the court

Once the application had been made in October 2015, the judges involved approached proceedings with a clear sense of urgency. This was evident even at the directions hearing (December 2015) when the judge, Jackson J, listened to the family's concerns about the treatment of S and the protracted journey that had finally bought the case to court and made clear statements about the need to proceed efficiently from this point. In an effort to avoid further delays he sought assurances that the Official Solicitor would instruct his own independent expert only if review of the medical records suggested there was good reason to do so. He also directed that any such report must be filed by early February to allow a swift move to a final hearing as soon as possible thereafter. The directions hearing was an important milestone for the family. S's mother said as she left the hearing: “So, at least there is a time scale now—no decision, but at least a time scale. The judge listened. I feel it's been a good day”.

In the event, however, the legal proceedings were to take 8 months from application to final judgment—involving another (fifth) layer of delay in deciding the outcome for S, with particularly distressing consequences for S's family. Hopes of a speedy process through the Court began to unravel once the Official Solicitor reviewed the evidence provided by the CCG and decided to instruct his own expert—particularly to look at whether the drugs being given to the patient might have had a sedative effect which interfered with an accurate diagnosis (para 2(8)). Negotiations in January 2016 between this expert and S's consultant led to an agreement that it was appropriate to wean her off sedation to allow further testing of her diagnosis—although this had not, in the consultant's earlier view, been necessary or in her best interests. The family then faced an anxious wait prior to the hearing—scheduled for March 2016—with the threat of further adjournment, which was now requested by the CCG solicitors on the grounds that the CCG no longer felt it had adequate evidence to support its original case (made on the basis of a diagnosis of PVS).

This time period was particularly stressful for the family because—in February 2016—S's feeding tube (a Percutaneous Endoscopic Gastrostomy (PEG)) became nonfunctional. It was replaced in the face of family opposition and without taking the decision back to the Court of Protection.^iv Replacing the tube felt ‘like assault’ to members of S's family—and was particularly distressing for her brother and her teenage daughter, both of whom felt that S's body had ‘rejected’ the feeding tube and that this was an opportunity to ‘let nature to takes its course’ without implicating anyone in S's death by actually withdrawing the tube (a painful decision to be involved in for family members even when they believe it is the correct one).4 As S's brother explained:That PEG tube perishing, it's kind of like it's natural, nobody's forced it, nobody's had to make a decision, it's just nature taking its course. This is the perfect opportunity just to, you know, start the process, let her go. But no, we had to reinsert it.

The family became increasingly desperate after this. S's teenage daughter (who supported the court application) had originally hoped not to be actively implicated in it. However, she was the only family member eligible for legal aid and she now felt pushed into a position where she had to become directly involved, first in the application for legal aid to fund ongoing legal representation and then in attending the hearing. She also wrote a letter to the judge about her mother: “It is wrong and cruel to keep her body alive”, she wrote, “please respect her wishes and let her be at peace”.

From the family's point of view this was an ‘avoidable’ delay. S's mother, brother and daughter were adamant that S would have wished to refuse life-extending treatment irrespective of the diagnostic label attached to her condition. As S's mother stated in a letter to the judge:I do not think that it would make any difference to [my daughter] if she was diagnosed as being in a persistent vegetative state or a minimally conscious state. Either way, she would consider that she does not have any quality of life. […] I have no doubt that she would not wish to continue living in this condition.

At the March hearing, the judge, Hayden J, clearly took a great deal of notice of this point of view (a fact much appreciated by the family). He reiterated their arguments from the bench, including acknowledging that S's best interests might not be the same as fine-tuning the diagnosis. He also expressed concern about delays—stating (according to our notes taken during attendance at this hearing) that: “inordinate, unjustified delay is inimical to S's best interests whatever the outcome”. Nevertheless, in the end he ‘reluctantly’ concluded that the court was left “with very little alternative…given the state of the expert evidence” (para. 14) but to adjourn until May to allow sedation to be reduced and further examinations to be carried out.

The judge made every effort to ensure a tight timetable at this point. He ordered both of the experts who had already provided a PVS diagnosis to have a telephone conference with the Official Solicitor's chosen expert the next day and to put in place a clear care plan to allow further assessments to be carried out within 2 months.

The 2-month adjournment was presented by the judge as ‘not long’ (especially in light of how long proceedings had taken already). However, it was devastating for the three generations of S's family who had already endured an extremely difficult few months since the directions hearing and had travelled up to Liverpool for the March hearing, hoping that a final decision might be made, as originally anticipated. Her brother came out of the hearing shocked by the way the legal discussion had developed. He felt the court had ‘lost sight’ of his sister as a person:The court case [at first] was all about S's best interests until [the consultant appointed by the Official Solicitor] came into it. And then the whole proceedings were taken over about was she minimally aware or was she PVS. When just before that we were talking about her best interests. So S flipped from being a human being to a case study in my opinion.

He was particularly disturbed that an expert who had not even visited his sister, or seen all her notes, was, in his view, able to have such an effect on proceedings:The influence that [the Official Solicitor's expert] had on the Court shocked me, because it changed the whole dynamic of the conversations that were going on. And I was looking at my mam [mother] thinking: “we're not talking about [my sister] anymore, we're talking about somebody who they want to get a definitive diagnosis from”.

The adjournment meant that, instead of a resolution, the family faced ongoing limbo, with no guarantee that a final judgment would be made even at the May hearing if, at that point, the diagnosis were still in question. For S's mother, in particular, after years of being told that all tests showed her daughter had no awareness, the suggestion that this might not after all be true was profoundly distressing. The subsequent weeks of waiting for further confirmation of her daughter's diagnosis were ‘horrendous’—in part because she was horrified to think that S might be feeling pain and distress (especially with sedation reduced). She felt her daughter was being treated as ‘an experiment, not a person’ adding: “They've forgotten about the patient. I'm praying for a miracle—may compassion triumph”. In the meantime, sitting at her daughter's bedside during these weeks between March and May 2016 she always left the door open so staff could see her, because “you do think about the pillow over the face…you do”.^v

The short, but highly distressing adjournment to address questions about the security of the PVS diagnosis was a ‘clinically purposive’ delay—in that its purpose was to seek further diagnostic precision and certainty—but it was nonetheless ‘avoidable’ in that the sedation issue could perhaps have been resolved prior to the case reaching court and in parallel to other processes (eg, if the sedation issue had been discussed and a way forward agreed with the Official Solicitor prior to the directions hearing). Given that the SMART test confirming PVS was carried out in August 2014, there was obviously time, and there surely could have been a mechanism, for questions to be raised and addressed prior to the directions hearing in December 2015. A more fundamental issue, however, concerns how cases for ANH-withdrawal from patients in disorders of consciousness are framed and judged and the extent to which they hang on determining precisely where a patient's diagnosis lies on an often-contested or ‘illusory’ continuum.7 ,8 Bringing the case for withdrawal on the basis that the patient has a PVS diagnosis may have contributed to avoidable delays, even though the PVS diagnosis was ultimately judged to be secure. This opens up a whole new discussion about the extent to which a definitive diagnostic label is necessary to determine best interests—an issue too extensive to review here, but which we will address in another paper.

As it turned out, the newly commissioned tests, like all the tests before them, indicated that S was in a PVS. Finally, 3 years and nine months after her initial brain injury, the judge ruled that ANH was not in S's best interests and could be withdrawn. She died on 4th June 2016. According to her mother, “it was very peaceful”.

Having identified five causes of avoidable delay for this patient, we now compare this case with others concerning ANH withdrawal from patients in PVS, address how delays might be avoided in future and reflect on the way forward.

Provision and inspection of care for patients in prolonged disorders of consciousness

It would be helpful to create a register of patients in prolonged disorders of consciousness in order to ensure that appropriate specialist resources and follow-up are available for them and to ensure that those who fund and provide care for these patients (and their legal teams) are aware of the national clinical guidelines, including timetables for action. It would also be important to provide access to expert co-ordination (eg, perhaps a case manager focused on timely best interests decision-making)10 and give support and training. In addition, official monitoring processes might also usefully incorporate systems that foreground best interests. Annual reviews of continuing health care funding, and regular inspections of care homes, do not currently routinely check that the ANH being provided to the patient is in their best interests. If either of these routine inspections were to flag up such issues, court applications might be started much sooner. Despite the fact that no court in England and Wales has ever found ANH to be in the best interests of PVS patients, such treatment is routine and is delivered to up to 16 000 PVS patients in the UK11 on a daily basis. This practice is supported by an organisational infrastructure which includes CCGs, insurance companies, and NHS continuing healthcare funding as well as the (largely ‘independent sector’) business of long-term care home provision. Those delivering, paying for, or receiving payment for, the treatment of PVS patients with ANH do not seem to fear prosecution for offences against the person, and the law seems tacitly to condone this. It may be that attention could be focused—and action galvanised—if a legal case for battery were to be brought against those who commission or provide on-going treatment to PVS patients without ensuring timely expert assessments and decision-making about whether that treatment is actually in the patient's best interests.12 A case could also be made for breach of Article 8 of the European Convention on Human Rights on the basis that treatment represents an unlawful interference with the patient's autonomy.

Legal practice in relation to ‘best interests’

Legal practice in relation to ‘best interests’ and the weight to be placed on the patients' own wishes is the second key area where efforts to solve the problems highlighted in this case study might focus. There is of course no definition in the Mental Capacity Act as to the priority (or otherwise) to be given to the person's own wishes in determining their ‘best interests’—it is one factor among others. Several post-Aintree cases show that the judiciary of the Court of Protection are increasingly willing to engage with the wishes of the individual, even when weighed against ‘sanctity of life’ considerations, but “at law the weight placed on the person's wishes, feelings, values and beliefs still remains largely within the discretion of the best interests decision maker: and the Mental Capacity Act 2005 does not require an explicit justification for acting contrary to them”.13

The role of the Official Solicitor in applications to the Court of Protection has become a cause for concern with the suggestion that he is more “foe” than “litigation friend” to those who may lack capacity in so far as he advocates not for what the patient wants (or would have wanted) but for what he independently considers to be in the patient's ‘best interests’ (in accordance with s5 of the Mental Capacity Act 2005). This can sometimes, as in this case, appear (eg, to the patient's family) as if the patient's wishes, feelings, values and beliefs are being sidelined and it can create an ‘adversarial’ context for decision-making. In particular, the perceived likelihood that the Official Solicitor will oppose treatment-withdrawal in all but the most clear-cut cases (regardless of reports of the patient's own wishes) creates a context in which continued treatment becomes the default option.

In addition, it has been widely noted that the ‘best interests’ standard is not compliant with the UN Committee on the Rights of Persons with Disabilities, and discussions conducted as part of the Essex Autonomy Project have proposed as “a good point of departure” that there should be a “defeasible presumption that actions taken in the best interests of P requires making decisions that achieve the outcome that P would prefer”.15 The Law Commission has recently proposed that section 4 of the Mental Capacity Act 2005 “should be amended to establish that decision-makers should begin with the assumption that the person's past and present wishes and feelings should be determinative of the best interests decision”. This development would offer an important opportunity to shift the current focus of court cases about patients in prolonged disorders of consciousness from a preoccupation with the person's diagnosis and prognosis, to a full consideration of what the person would have wanted (as testified by those who knew them).

The perceived requirement for a court application

The perceived requirement for a court application lies at the root of ‘avoidable delays’. Although the CCG that commissions care bears ultimate responsibility for many of the delays we identified in relation to S, these delays were shaped by the perceived need to go to court. Instead of the clinical team consulting with those close to the patient and making and enacting the best interests decision as they do with other patients, they became enmeshed with lawyers and legal procedures. This case study highlights how going to court can distance the team caring for the patient from decision-making and trigger complex lines of communication and decision–making (eg, divisions between who is providing care and who is commissioning care). The (apparent) need to go to court to withdraw such treatment conveys a message that providing ANH is the correct position unless and until a court rules otherwise. This can lead to an abdication of best interests decision-making by the clinical team, who may feel that it has been placed outside their jurisdiction. Going to court necessarily causes a time lag between clinicians coming to the conclusion that treatment is not in the patient's best interests, and actually being able to act in accordance with this assessment. Clinicians may therefore be left feeling that decision-making about ANH is not an urgent issue to resolve; alternatively, they seek to circumvent the need to go to court by trying to allow the patient to die via decisions they believe they are able lawfully to make without court applications, such as withholding antibiotics. A court application will always, of necessity, involve a further time lag in the process (between application and judgment)—but this case study illustrates how the delay it creates can stretch backward into the process, creating avoidable delays long before the application is ever made (see figure 3).

In addition, the Court seems recently to have inadvertently caused delays as an unintended consequence of rebukes to solicitors representing CCGs for failing to prepare cases well. Recent case law (Sheffield Teaching Hospitals NHS Foundation Trust v TH; St George's Healthcare NHS Trust v P and Q) has been critical of applications launched ‘precipitously’ before a secure diagnosis is in place. Despite clear differences between these cases and the consensus withdrawal cases described in this article, legal teams have reacted with a great deal of anxiety about “dotting the ‘i's and ‘crossing the ‘t's’” before bringing a case to court. This contributes to a clear tension insofar as, on the one hand legal teams are keen to ensure that everything the Court might require is put in place before the court hearing, and, on the other hand, their lack of experience (in many cases) with what is in fact required. Current guidance (eg, via Practice Directions to the Court of Protection Rules) is minimal or non-existent. If it continues to be perceived as necessary to take all—or at least some of—these cases to court, then a checklist of relevant materials and access to expert advice for CCG legal teams would be extremely beneficial. This could be alongside clear benchmarking about the target timetable for preparing the application to court, advance consultation with the Official Solicitor and/or a pool of agreed independent experts to confirm diagnoses (with a limit on the number to be involved unless special circumstances pertain). Factors that may facilitate timely treatment-withdrawal are displayed in figure 4.

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Figure 4

Factors that may facilitate timely withdrawal of the feeding tube from a permanent vegetative state patient when family and treating team agree that treatment is not in the patient's best interests.