In NHS Cumbria CCG v Rushton  EWCOP 41, Hayden J has both given clear endorsement to the BMA/RCP guidance on decisions about clinically assisted nutrition and hydration (‘CANH’) and reiterated the obligations imposed on medical practitioners in relation to advance decisions to refuse treatment (‘ADRTs’). The judgment was delivered in December 2018, but delayed until a month after the individual in question had died, and has only just appeared on Bailii.
The application before Hayden J was for the proposed withdrawal of CANH from an 85 year old former nurse, Jillian Rushton. She had sustained a traumatic head injury in December 2015, and then was in in prolonged period of disorder of consciousness, lasting 3 years by the time that the case came to be determined. A year before she sustained the head injury, she had created an ADRT that provided that “on collapse, I do not wish to be resuscitated by any means,” that “I am refusing all treatment. Even if my life is at risk as a result,” and that “in all circumstances of collapse that put my life at risk, this direction is to be applied.” Although the judgment does not record this, given the way in which Hayden J then approached it, it appears clear that the ADRT must have been witnessed (as is required in respect of one concerning life-sustaining treatment). Mrs Rushton also sent the ADRT to her GP.
On the 21 December 2015, Mrs Rushton fell and suffered a major trauma to her head. It was so significant that she was not expected to survive and she was placed on a palliative care plan. On admission, a naso-gastric tube was inserted to feed her. Hayden J considered that this was “was done instinctively by conscientious medical staff, whose every instinct would have been to promote her welfare.” When, contrary to how the position appeared upon admission, her condition improved, the NG tube was replaced by a percutaneous endoscopic gastrostomy (PEG) which was inserted at the end of January 2016, in part in order to facilitate her care back at home with her son.
Hayden J considered that it was clear that the insertion of the PEG “in the circumstances of this case, was an essentially life-sustaining treatment in circumstances where there was little, if any, prospect of meaningful recovery.” He therefore held that “the initial insertion of the naso-gastric tube was arguably incompatible with Mrs Rushton’s wishes. There can be little doubt, to my mind, that the insertion of the PEG was contrary to Mrs Rushton’s written decision.”
Hayden J was taken to the clinical notes that provided the background to the decision-making. The ADRT was not available at the hospital, and “there [was] no reason why it should have been:”
However, the existence of the document and the identity of the GP came to light. A telephone call was made to the GP at 10.25am of the morning of 26th Jan 2016. In response to a message, the GP contacted the ward. He told them he had checked the systems and that he knew Mrs Rushton and her family. The record of the call reads, “the only ADR (Advance Directive) in place is in regards to do not resuscitate.” The GP is reported as having said that he had no knowledge of any other document. There was only one document in existence and, I must infer, that at some point in relaying its contents, it has been incorrectly interpreted. […] Having heard from Mrs Rushton’s family I have not the slightest doubt that she intended that her directive would have applied to the insertion of the PEG.
Largely, it appears, because of the way in which Mrs Rushton’s family wished to approach matters, Hayden J did not then go on to examine responsibility for the incorrect interpretation of the ADRT, but noted that her circumstances:
25. […] provide an opportunity for this Court to emphasise the importance of compliance both with the statutory provisions and the Codes of Practice, when preparing an Advance Decision. Manifestly, these are documents of the utmost importance; the statute and the codes provide essential safeguards. They are intending to strike a balance between giving proper respect and recognition to the autonomy of a competent adult and identifying the risk that a person might find himself locked into an advance refusal which he or she might wish to resile from but can no longer do so. The balance is pivoted on the emphasis, in the case of life-sustaining treatment, given to compliance with the form specified by statute and codes. The Court has highlighted the profound consequences of non-compliance with the requirements: W v M and S and A NHS Primary Care Trust  COPLR 222; Re D 2012 COPLR 493.
26. It perhaps requires to be said, though in my view it should be regarded as axiomatic, that the medical profession must give these advanced decisions the utmost care, attention and scrutiny. I am confident the profession does but I regret to say that I do not think sufficient care and scrutiny took place here. The lesson is an obvious one and needs no amplification. Where advanced decisions have been drawn up and placed with GP records there is an onerous burden on the GP to ensure, wherever possible, that they are made available to clinicians in hospital. By this I mean a copy of the decision should be made available and placed within the hospital records with the objective that the document should follow the patient. It need hardly be said that it will rarely, if ever, be sufficient to summarise an advance decision in a telephone conversation.
Hayden J then turned to the question of whether the continuation of CANH was in Mrs Rushton’s best interests in circumstances where it appears that the son who had been providing her almost exclusively with care was opposed to its withdrawal, in particular because he considered her to be responsive.
Professor Wade, an expert in neurorehabilitation, was instructed, and gave evidence to the court. He indicated that he was resistant to identifying Mrs Rushton’s condition as “a persistent vegetative state” because “he concluded that what was truly required was a holistic evaluation of her best interests, in the context of her wishes and feelings, in which her level of consciousness played a part.” Hayden J observed that:
29 […] That approach, very much chimes with the guidance issued […] by the Royal College of Physicians and the BMA: “Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent”. At section 5 of that guidance, consideration is given to decisions concerning CANH in previously healthy patients now in a vegetative state or a minimally conscious state, following a sudden onset of brain injury. I am conscious that the phrase “vegetative state” is distressing to family members, but while it remains a medical term I am constrained to use it. The Guidance is, in my view, an extremely helpful piece of work which reflects the breadth of experience, both in the core group of representatives of the British Medical Association, Royal College of Physicians and General Medical Council as well as the multi-disciplinary advice that was drawn upon. I take the opportunity in this judgment to highlight the following:
5.1 Clinical assessments
Where patients are in Prolonged Disorder of Consciousness, PDOC, (i.e. for longer than four weeks) following a sudden-onset brain injury, providing accurate prognostic information is a very important part of the decision-making process. Assessing levels of awareness – and in particular the prospect of it increasing – however, is not a simple task and there is no single clinical sign or laboratory test of awareness. Its presence must be deduced from a range of behaviours which indicate that an individual can perceive self and surroundings, frame intentions and interact with others. These observations need to be repeated over a period of time, with specialist analysis of the results. It is essential, therefore, that these patients have a thorough, expert assessment according to the RCP guidelines to provide a detailed evaluation of their level of awareness of themselves or their environment and to record any trajectory towards future recovery or deterioration.
There may be some cases in which there is clear evidence that the findings of detailed assessments will not affect the outcome of the best interests decision because, for example, even the most optimistic prediction of recovery would not constitute a quality of life they would find acceptable. Where this is the case, a decision can be made before these assessments have been completed.
In most cases, while these investigations are being made, careful consideration should be given to reducing or stopping sedating drugs, to ascertain the extent to which they are reducing responsiveness (if at all). This may involve risks, for example of pain or seizures, which can be distressing for those close to the patient. It is crucial that doctors clearly explain the steps they are taking, why they are taking them and what to expect during that time. If withdrawal or reduction of medication is likely to have significant consequences for the patient, the doctor will need to weigh up the balance of benefits and harms between optimal assessment conditions and adequate symptom-control. This will include an assessment of how important a clear diagnosis of permanent VS versus MCS would be for the patient in terms of the best interests assessment.
Diagnosis and prognosis
The perceived importance of obtaining a precise and definitive diagnosis has reduced over time, as it is increasingly recognised, by clinicians and the courts, that drawing a firm distinction between VS and MCS is often artificial and unnecessary. In practice, when assessing best interests, information about the patient’s current condition and prognosis for functional recovery and the level of certainty with which these can be assessed is often more important than achieving a precise diagnosis.
Hayden J continued:
30. These paragraphs are apposite. The perceived importance of a definitive diagnosis has reduced over time. As is increasingly recognised by clinicians and the Courts, drawing a firm distinction between vegetative state or a minimally conscious state is often artificial and unnecessary. In practice, when assessing ‘best interests’ and analysing the information relating to the patient’s current condition and prognosis for cognitive recovery, the level of certainty to which these can be assessed is often more important than an actual diagnosis. Many patients would want CANH continued until there is a clear sense of the level of recovery that can be achieved. In these patients the prognosis is important as it allows those concerned to make best interest decisions. For example, they may have refused treatment if the Prolonged Disorder of Consciousness (PDOC) assessment showed that they were likely to be left permanently unconscious, but not if they were likely to regain consciousness.
On the facts of the case before him, Hayden J was clear that Mrs Rushton “would have hoped that her wishes in her advance decision would have applied to her present situation. I cannot easily contemplate circumstances in which the views of an adult with this degree of disorder of consciousness could be communicated more volubly or unambiguously.”
Hayden J then, finally, had to consider the care plan in circumstances where one of her sons had cared for her almost exclusively, with no intention to shut out family or medical professionals, but where it appeared that he was scared of losing his mother and so “battened down the hatches as best as he could to try and prevent it.” The consequence was that:
36. There is a rigid, inflexible regime of care at the moment. It must be said, that is obvious that Mrs Rushton has been very well cared for. Ms Paterson, on behalf of the OS, submits that the present circumstances do not promote or sufficiently protect either Mrs Rushton’s autonomy or her dignity. Dignity at the end of life is elusive both conceptually and practically. For Mrs Rushton’s life to conclude with dignity, she needs what all of us would need in that situation, peace, care, proper medical attention and the presence around her of those she has loved. I have concluded that though she would have wished to die at home, true respect of her dignity can only be achieved in a hospice and under a regime which, as her son Hugh says, “allows her some space and privacy”. Tellingly, in my judgment, insightfully, Mr Hugh Rushton went on to say that his mother needed to be in a place where she was no longer “prodded and poked” by those undoubtedly well intentioned to care for her, but rather she needed a place “to rest”. I entirely agree and consider that the care plan contemplates precisely this. Accordingly, I endorse it.
At the level of principle, the judgment is an important reminder of the intended power of ADRTs. Their utility in practice is all too often diminished by the fact that there is no central repository akin to the register of LPAs, but in this case the problem was compounded by the fact that (for whatever reason) the effect of the document was simply misunderstood in the unfortunate Chinese Whispers approach that was taken. That would have negated even the workaround that can be taken to the absence of a registry by carrying a card to indicate that a person has an ADRT has it and where it is to be found (see, for a way in which to do this, and for a (free) process to create an ADRT, the excellent website of Compassion in Dying).
On the face of the judgment, it is a little odd that, having identified that, in fact, the insertion of the PEG was contrary to the ADRT that Mrs Rushton had made, Hayden J did not then go to hold that this gave the answer to the question of whether CANH should be continued. An ADRT does not just apply to the question of whether treatment should be carried out in the first place, but also “at the time when the question arises whether the treatment should be […] continued” (see s.26(1) MCA 2005). The relief that a court can grant in relation to an ADRT is not provided for under ss.15/16 MCA but rather under s.26(4), i.e. declaring whether the ADRT exists, and/or is applicable to the treatment. It is only if the court finds that there is no valid and applicable ADRT in place that it can then go on to exercise its normal welfare jurisdiction under s.16 to determine what decision to make on the person’s behalf and in their best interests. In other words, one might ask whether there was even a best interests decision for Hayden J to make. If there was not, then regardless of the family’s (laudable) desire not to dig into what had happened in 2015 in terms of why CANH had been started in the first place, Hayden J had no power to undertake the best interests decision-making process he did to determine whether it should continue.
As is so often the case in Court of Protection cases, one suspects that more may have been going on than is expressly recorded on the face of the judgment. One explanation (although this is speculation) might be that Mrs Rushton’s ADRT was interpreted as applying solely to the initial administration of any form of medical treatment (perhaps because of her use of the term “upon collapse”). If this was the case, it might therefore then be said that Mrs Rushton had not expressly catered for the position where life-sustaining treatment had, in fact, been started, such that the ADRT did not strictly govern the situation. Nonetheless, as Hayden J observed, it was difficult to imagine a situation “in which the views of an adult with this degree of disorder of consciousness could be communicated more volubly or unambiguously.”
Whatever the unanswered questions as to the precise way in which Hayden J approached his own task as Court of Protection judge on the facts of this case, however, the wider point as to the obligations upon doctors arising from ADRTs are clear and unambiguous.
The approach to decision-making in PDOC
At a purely selfish level, the endorsement by Hayden J of the BMA/RCP guidance is welcome, as I was one of the two legal advisers to the working group. More broadly, and importantly, it is an important judicial confirmation of the message of that guidance that the approach adopted in the earlier cases of a close focus on the diagnosis and prognosis as important in and of themselves is simply incorrect; the focus should be on the extent to which the diagnosis and prognosis (and the level of certainty as to both) would have been of importance to the patient themselves.
It is important to note, however, that on the facts of the case as presented in the judgment, it is not obvious that Mrs Rushton fell within the category of circumstances covered by the paragraphs of the guidance identified by the judge. These paragraphs address decisions about CANH in previously healthy patients in vegetative state or minimally conscious state following a sudden-onset brain injury. On the facts of the case, Mrs Rushton would appear much more likely, in fact, to have fallen into the sections of the guidance relating to patients with a sudden-onset or rapidly progressing brain injury where they have multiple comorbidities or frailty (either pre-existing or as a result of the incident that led to the brain injury) which is also likely to shorten life expectancy. The case was issued prior to the publication of the guidance, and it is not clear whether the judge was addressed on the precise application of the guidance to the facts of Mrs Rushton’s case. Within the framework of the (useful) judicial endorsement of the guidance as a whole, clinicians will need to consider how the facts of any patient’s case before them best fit the terms of the guidance.