Judge: Newton J
Citation:  EWHC 2533
F was born in 1948. From 1993 onwards, she had significant liver failure caused by chronic abuse of alcohol. She had been admitted to hospital on a number of occasions in 2000, 2001 and 2006. On 11th January 2007 she was found slumped across her bed apparently with concussive symptoms. She had suffered an acute and bilateral subdural haematoma. Over the next two days, whilst in hospital, there was a reduction in her level of consciousness. On 28th February 2007 F was transferred to a different hospital where she remained.
She has been assessed over a long period (8 years) as being in a vegetative state with no perception of her surroundings. She was not communicative, although she made moaning sounds and could blink her eyes (but these were considered to be entirely reflexive movements). In 2010 it was recorded by a nurse that F was in a persistent vegetative state, having had no communication or interaction with family or care staff.
In 2013 a best interests meeting concluded unanimously that it was not in her best interests to undergo invasive surgery. The application to the court was triggered, by an anxiety about a PEG feeding tube. At the time of the application a temporary solution to the issue had been found.
An application was issued by the Trust on 25th February for a declaration under s.15 of the Mental Capacity Act that F lacked capacity to make decisions about her clinically assisted nutrition and hydration CANH), that it was not in F’s best interests for CANH to be continued and that it was lawful and in her best interests for CANH to be withdrawn. The application was supported by F’s family. The Official Solicitor was appointed by the court to act as litigation friend of F.
In support of the application the treating clinicians had provided reports that confirmed that in their view F had been in a vegetative state for 8 years with no prospect of recovery. F had been observed routinely and informally by staff and formally using the WHIM procedure. Professor Wade had been asked to provide a report for the Trust and he had agreed with the treating clinicians assessment that F was in a permanent vegetative state (PVS) and was of the view that undertaking further assessments of the level of awareness ‘would delay matters and no realistic prospect of identifying awareness.’ His report supported the Trust’s application.
During the course of carrying out his enquiries the Official Solicitor appears to have been concerned that there were unusual entries in F’s medical records 2007 between April and December that may have been evidence of some signs of awareness – the last unusual entry being 31st January 2010. He instructed Mr Badwan to provide a further report. Mr Badwan concluded that notwithstanding the unusual entries in 2007 between April and December the records were consistent over five years and that, on the balance of probability, F has been in a vegetative for at least five years, and very probably eight. He agreed with Professor Wade that further treatment was futile and would not result in any improvement of the patient’ s level of awareness or clinical status.
The judge found that F was in a permanent vegetative state and had been so for five years and probably eight and that F would neither improve nor would she recover awareness. The treating doctors, clinicians, the independent experts, family members and the Official Solicitor acting for F agreed that it was in the best interests of F for CANH to be withdrawn. The judge approved the withdrawal of the CANH from F and made the declarations sought.
During the course of giving judgment Mr Justice Newton expressed concern that the Royal College of Physicians’ National Clinical Guidelines on Prolonged Disorders of Consciousness (2013) had not been strictly complied with and that the patient’s diagnosis had not been clear before the application was made. In the judge’s view structured assessment tools should ordinarily always be used by those applying to the court in such cases and failure to do so would result in summary rejection of the applications:
“14…The Court must examine therefore diagnosis with some considerable degree of care. In essence, without setting out the entirety of the guidance which is substantial, it seems to me that the guidelines which are set out in them ordinarily should always be followed by applicants in circumstances such as this. Indeed, the guidance itself sets out that it is an area where the tools which are set out extensively within them are ones which should be precursors to applications being made. There are good examples, but I preface it all by the fact that it is evidently of the utmost – indeed the most vital – importance that every step should always be taken to diagnose a patient’ s true condition before the application is made. If that does not occur what has happened in this and indeed in other cases in my experience is that there is inevitably delay, uncertainty and anxiety, as well as increased cost.”
“16… Those assessments are there for good reason. Authorities must understand that in future without that evidence, it is likely that the application may be subject to summary rejection. The guidance makes it clear that structured assessment tools should ordinarily always be used for assisting the court, and those who apply to it. It refers to three main assessment processes: The first is the Wessex Head Injury Matrix (“WHIM”); second, is the Sensory Modality Assessment and Rehabilitation Recovery Scale as revised (“CRSR”). The guidance recommends that the use of one or more of those three assessments should be used as instruments of formal structured assessment over time in such applications. Though it is not necessarily prescriptive it does recommend, for example, that if there were to be a WHIM assessment that should be carried out on a specific number of occasions (in fact ten) and over an extended period over a number of weeks. In relation to the SMART assessment, it is a detailed assessment. It is developed to detect awareness, functional and communication capacity. The SMART assessments are ones which need to be carried out by suitably qualified persons. They are very sophisticated tools of invaluable insight and assistance. The court expects a high level of certainty with respect to diagnosis, because as earlier cases have shown it is easy to reach a diagnosis which in fact is subsequently shown to be incorrect (some 40% I am told). The court can only reach a safe conclusion once it has regard to the clinical evaluation and having regard to the WHIM or the CRSR or probably better still a SMART if that is necessary in the particular case. If there is any degree of uncertainty or disagreement on the level of responsiveness then the SMART test, as the court’s experience shows, is essential to resolve it.’
17…Ideally the guidance suggests that at least two of those assessments should be carried out (the WHIM, the CRSR or the SMART) in support of any application made to the Court of Protection. Additionally, where assessments are to be used in support of an application to the court to withdraw treatment as life sustaining therapy or treatment, a SMART assessment should also be used. Here no SMART assessment has been carried out. Here, fortunately from the experts familiar to the court, it is considered that the equivalent of a CRSR assessment “can be properly deduced and inferred” from the length of time. There were WHIM assessments (although they were in fact not carried out in compliance with the guidance as suggested).”
Mr Justice Newton was prepared to make the declarations sought because Mr Badwan had supported the other evidence in the case.
“24…The advices of Dr. Bagwan, which are always helpful and to the point, are clear and support the other evidence in this case; the court is therefore prepared to make the declarations as sought. The guidelines are set out for good reason. It is not just that it is good practice and a gold standard that should be adhered to, but because the court is in fact being asked to sanction a course of conduct which, If granted, almost always leads to the death of a patient. The law recognises the overriding importance of the sanctity of life. Therefore the guidance must be complied with in relation to all such applications so that the court can deal with the matter swiftly, humanely and justly.”
This is an extempore judgment given by Mr Justice Newton. This is the third case which Mr Justice Newton has sat on recently where he has had cause to comment on the failure of the applicant to comply with the RCP Guidelines or to provide adequate evidence and analysis to enable the court to carry out the necessary analysis and balance (see St George’s Healthcare NHS Trust v P &Q  EWCOP 42(Newton J) and Comment at https://www.39essex.com/wp-content/uploads/2015/07/MC-Newsletter-July-2015-HWDOL.pdf).
The RCP Guidelines set out to provide a more consistent approach to diagnosis and management of patients with prolonged disorders of consciousness (PDOC) including the vegetative state and minimally conscious state. The Guidance covers the definitions and criteria for diagnosis of vegetative and minimally conscious state, the assessment, diagnosis and monitoring of patients in PDOC, and care pathways for acute and long term management of patients in PDOC. It attempts to set out for clinicians, service providers and commissioners what members of the working party considered best practice within the existing legal framework. (https://www.rcplondon.ac.uk/sites/default/files/pdoc_web_final_navigable_2014.pdf)
The court quite rightly requires a high level of certainty concerning the diagnosis of the patient’s condition because, as Mr Justice Newton says, if the diagnosis is PVS, the court is being asked to sanction a course which will lead to the patient’s death. The Court therefore requires a firm diagnosis to have been made in accordance with the RCP Guidance before an application is made to the Court.
It appears from the reported cases that the Court interprets the Guidelines as requiring a SMART assessment to be carried out in almost all cases that come before the court. This has consequences in terms of delay and cost and it is not always appropriate. As Professor Wade comments in his report:
“22(2) ‘Although the guidelines had indicated the need for a SMART assessment it was justified in this case stating there must always be an element of clinical judgement, pragmatism and interpreting and in using the guidelines to the specific case in hand. He additionally made the point that the guidance had focused very much on people in early stages of recovery and, without in any way wishing to be glib, effectively the guidance is just that guidance.”
“21 (6) As to the suggestion that a SMART assessment should be undertaken now, this assessment has no pre-eminent superiority or position and indeed increasingly uses evidence taken from nursing staff and family as an important part of the assessment. Clinically, there is no justification for the expenditure of considerable resources or time on undertaking this assessment in addition to the existing evidence.”
If there is some doubt or ambiguity in the Guidance as to when a SMART assessment is appropriate, then supplementary Guidance should to be given to clarify when it is appropriate. It is essential that the Guidance is clear on this point and it is equally essential for the RCP to ensure that those carrying out the assessments using the structured assessment tools set out in the Guidance have received sufficient training and are sufficiently experienced in their use.