AVS v A NHS Foundation Trust & Anor

This is a case about providing medical treatment for a patient who has been declared to lack capacity to make decisions as to his treatment and care. The problem in the case is that at the moment there is no medical practitioner ready and willing but also able to provide the treatment which the patient’s next friend considers should be given to him.

The patient is 57 years old. He led a full, active and happy life until his health began to fail in 2008. In May 2008 his rapidly deteriorating condition was diagnosed by Dr DH, a consultant neurologist at the hospital whose Foundation Trust is the first respondent. I shall refer to the hospital as “the treating hospital” or simply “the hospital” and following the example of the President I shall direct that no person other than the advocates and solicitors instructing them (and any other person identified by name in the judgment itself) may be identified by name or location and that in particular the names of the patient and his family and all the doctors concerned must be anonymised.

The diagnosis made by Dr DH was that the patient was suffering from sporadic Creutzfeldt Jakob’s Disease (“sCJD”). This is a very aggressive, but fortunately very rare, disease. Prions (proteinacious infectious particles) attack the structure of the brain and cortical tissue – which is essential for consciousness – is progressively destroyed by the spread of prion protein. It is a fatal disease and there is no known cure. The diseases have different origins, produce different symptoms, affect patients differently. It is the hospital’s case that medical information, whether individual or derived from research, in respect of patients with vCJD and their treatment is of limited assistance in considering a patient with sCJD.

The prognosis for the patient was poor. It was thought at the time that he had three to four weeks only to live. The median survival rate is about four months. Only about 5% of sufferers live for two years or longer from onset. In this case the patient’s deterioration was rapid but, while still in full command of his mental faculties, he executed a Lasting Power of Attorney in favour of his brother (whom I shall refer to as such or as “the applicant”), a practising solicitor. There is a very close bond between the brothers and in discussion in those early days the patient expressed the wish to live and for every effort to be made to prolong his life. The brother believes it is his bounden duty to ensure that this wish is carried out. Discharging the trust he implacably believes was imposed upon him is the fuel which drives this litigation.

Applying himself assiduously to his task, the brother conducted his own research into the ravages of CJD. He discovered that in 2002 a distinguished Japanese neuropathologist had published a paper entitled “Intraventricular infusion of PPS as a treatment for prion disease” demonstrating how the injection of PPS (Pentosan Polysulphate) into the prion affected brain tissue of rodents and dogs affected with prion disease appeared to slow down the rate at which the brain tissue was damaged by prion disease. PPS is a naturally occurring compound which is derived from the shavings of the bark of the beech wood tree. It has anti-coagulant and anti-inflammatory properties and as such is commonly administered orally for cystitis and inflammation of the bowel. It has no known side effects and is not expensive. Because it offered a chance of slowing down the inexorable deterioration of the brain, the brother was most anxious that the patient be treated with it. The hospital was not prepared to do so because it considered that the treatment was experimental. Nevertheless the hospital co-operated fully when Dr K (now Professor K) indicated his willingness to treat the patient at Professor K’s hospital. In June 2008 the patient underwent surgery at that hospital to place a bi-lateral intraventricular catheter into the patient’s brain, the catheter being connected to a pump subcutaneously implanted in the chest, the pump being filled with PPS approximately every three months. Although there may be some uncertainties about it, there is a very tenable view that PPS has indeed prolonged this patient’s life far beyond the expectation held in May 2008. But its effect is only to slow down the progression of the disease: it does not halt it. The medical opinion of those treating the patient in the hospital is that if he is not already in a vegetative state, he is very close to it. This is passionately denied by the family who are totally convinced that their loved one, whom they visit daily, can and does respond to them from time to time, albeit not always, by opening or closing his eyes or turning his head on request.

Sadly the pump failed at the end of July 2010 and all infusion of PPS ceased early in September. The hospital have refused to undertake the necessary surgery to replace the pump. The hospital is not willing to continue treatment with PPS. Dr DH explains why in a report dated 13th October 2010. Although conceding “the obvious possibility that PPS may have played a part in this survival” for longer than had been expected, he is nonetheless of the view that “although there is no reliable evidence to suggest that PPS is effective in sporadic CJD, there is no evidence to suggest that it is ineffective.” He believes that the patient’s current condition is now so poor that any further treatment with PPS is futile. The recent assessments of the patient suggest that he is either near a vegetative state or in a vegetative state with additional evidence of brain stem dysfunction as swallow and cough are impaired. These findings are entirely consistent with very advanced prion disease. No change has been observed in his clinical condition since the PPS infusion ceased early in September which is further evidence of the fact that PPS is no longer having any effect in this case. His view is that the evidence that PPS can benefit patients with sporadic CJD is unquestionably weak. In any case, there is no evidence anywhere in the published literature that PPS can benefit a patient in a vegetative or near vegetative state. Thus there is a complete lack of evidence to provide a rationale for continuing treatment now the patient has reached that state. His conclusion is that there is no benefit in replacing the pump or resuming the infusion.

Nonetheless the hospital approached Professor K who came down to London on 13th September, held discussions with Dr DH, the ward staff and the brother and had a full opportunity to assess the patient. He then delivered a report dated 16th September 2010 in which he dealt with a number of matters including questions put to him on behalf of solicitors for the brother. He stated his personal background to be one with approximately thirty years in Clinical Neurology and with over sixteen years particular experience with prion disease. He says his professional profile is primarily that of the patient-centred physician and secondarily that of a prion disease academic. He was not certain that one could say that the patient was in an absolutely unequivocal vegetative state but if not, he is very nearly in such a state and he did not believe there was any meaningful, organised, time-extended conscious experience. Asked about the proven benefit of PPS in general, he considered that the evidence such as it is for PPS treatment would suggest that any benefit would be in slowing disease progression rather than halting disease progression and it is certainly in no way a cure. He understood that the Japanese have now stopped using that treatment. There is, therefore, no organised evidence for efficacy of intraventricular PPS in sCJD. Such evidence that does exist from individual case treatments does not suggest efficacy in sCJD. Any efficacy that is expected would be some slowing of disease progression. Asked what the benefit of PPS has been for this patient his conclusion was that he simply did not know whether the treatment has had any efficacy. The available evidence is certainly consistent with it having slowed disease progression (but not having any more profound effect). The patient’s clinical course is also consistent with what may happen in a significant minority of individuals with sCJD without treatment. He was of the view that the present decision should not be based on the failure of the pump which should be regarded as an incidental problem which has arisen for uncertain reasons. It serves to refocus attention on the need for continuing treatment. The fundamental question was whether it was in the best interests of the patient to replace the pump and continue PPS indefinitely and his final view was that it would not be reasonable to continue with treatment. He did not think this would be in the best interests of the patient. He said:

“When the decision to treat him was made, there was a lot of uncertainty about PPS utility particularly in relation to sCJD. I think the situation is somewhat clearer now and the evidence for efficacy in sCJD is not convincing. Although there is some possible suggestion that might suggest treatment efficacy in this particular case, the course of the illness to date can indeed be explained on the basis of natural disease process. In addition this individual is either in a vegetative state or in a state which is very close to it. This represents the end stage of a catastrophic generalised brain disease process and there is no chance of any recovery from this. As a clinician, I would feel concerned about continuing treatment in this kind of situation even if there was convincing evidence for some therapeutic effect in the past.” (The emphasis is his.)

“… In discussion with his brother, the issue of life expectancy was raised in some detail. I do not think there is any good evidence that continuing or ceasing the PPS at this point in the illness will have any significant effect on life expectancy. The main determining factor would be the general supportative care of the individual. In relation to this point, it is my person view that PPS treatment is not to be used in prion disease principally and simply to increase duration of lifespan. It is to slow progression of disease and maintain some kind of meaningful neurological condition for as long as possible. In this particular case, I think that point has been passed. It is an unequivocal sad fact that this patient is in an absolutely catastrophically severe neurological condition with no hope of any recovery.”

The hospital also provided a report from Professor R, a professor of clinical neurology who assessed the patient on two occasions in August 2010. His conclusion was:

“I am of the view that although the period of survival is longer than that commonly seen with sporadic CJD it is not unknown, particularly with the intensive medical nursing care. I believe that following the initial deterioration there was a plateau which can also be seen in CJD and that despite the Pentosan there has been continued deterioration to the current state. I believe that there is no prospect for improvement and that in risk benefit terms it is in the best interests of the patient that Pentosan infusion is not continued.”

This was all bitterly disappointing news for the brother and the family. He reiterated to Professor K that he was acting on the certain belief that his brother would want what he had asked of him in 2008, namely to do whatever was possible for him, to pursue any treatment options and not to give up on him. Driven by that determination he began the proceedings which bring the matter to this court. On 8th October 2010 he, acting as the patient’s next friend, issued an application in the Court of Protection inviting the court to make declarations that it is in the best interest of the patient for the infusion pump necessary for the administration of intraventricular PPS to be replaced, and that it is in the best interests of the patient for the administration of intraventricular PPS to continue. He supported that application by filing a long witness statement. It clearly demonstrates his and his family’s devotion to the patient and their unceasing ministrations on his behalf. The applicant and his mother are daily visitors. The brother has quite clearly devoted all his energy to do all he can for his brother. It has led him, perhaps, into confrontations with Dr DH in whom he has lost confidence. For the present purposes of this appeal those matters are immaterial. There is no doubt whatever that the brother holds the unwavering belief that replacement of the pump and the continuation of treatment will benefit the patient but, being a solicitor and not a neurologist, his opinion is of less weight than qualified medical opinion. It is, therefore, necessary to examine the medical support he has for his case.

Professor NR has experience from 19 years clinical and academic neurosurgery operating from his clinic in Germany. He can only report on the papers, not having seen the patient. He considers that a permanent vegetative state with complete functional destruction of the cerebral cortex and cessation of all higher cerebral activity cannot be proven without further diagnostics such as functional MRI or functional PET. He agrees that administration of PPS is able to slow down to a high degree the progression of the disease whilst it does not represent a cure. In his opinion there cannot be any doubt that the replacement of a malfunctioning pump is in the best interests of the patient. He considers the interruption of treatment by pump malfunction is not the appropriate time at which to make an assessment that treatment should be discontinued. Discontinuing the delivery of PPS to the brain for longer than a few weeks would be expected to result in tipping the equilibrium towards increased quantities of pathological prion protein being produced and therefore towards increased damage and death of previously functioning cells. He concludes:

“The pump replacement procedure is minor, may be performed under local anaesthesia, does not require any excessively advanced surgical skills, and may be performed in any general hospital with a neurosurgical department, which results in a favourable risk-to-benefit ratio.”

He does not, however, offer in his report to perform the operation himself. In his second witness statement the brother says Professor R is willing to replace the pump on a privately funded basis but how and where it is proposed this should be done is unclear.

Dr McC is a general practitioner whose patient is JS, the longest surviving vCJD victim in the world, having survived some nine years since he was diagnosed to be suffering from that disease. On 11th December 2002 the President Dame Elizabeth Butler-Sloss granted declarations that it would be lawful and in the best interests of that patient to receive medical treatment for the condition variant CJD by intracerebral infusion of PPS and to undergo surgical and other ancillary treatment to enable that to happen. All Dr McC can say is that in his opinion PPS therapy has been demonstrated to be in his patient’s best interests. This view was supported by JS’s father who founded the Human BSE foundation, the CJD Alliance and the International CJD Support Alliance. In a long witness statement he sets out the struggle he has had on behalf of his son and his absolute conviction that his son has benefited from the infusion of PPS.

Dr CP is a lecturer in neurophysiology who has taken a keen interest in the JS case which leads him to conclude that:

“I believe that the delivery of Pentosan Polysulphate has protected the brain stem using an as yet unknown mechanism so that JS has become the first survivor believed (by his GP) not to be terminally ill of vCJD, now surviving around nine years since initial diagnosis.”

He expresses no view about the benefit to the patient, the subject of this appeal.

Professor IB is a consultant neurologist who believes that a decision to continue or stop treatment should not be dictated by “hardware” failure but should be based on an ongoing evaluation of efficacy or side effects. That evaluation should be combined with discussion with family members on progress and their and others’ perception of benefits of such treatment. The replacement of the pump would not present any serious risk to the patient. He says:

“The mode of action of PPS and optimum duration of treatment is unknown as is PPS’s efficacy in sporadic CJD. The treatment is experimental and its benefits uncertain Given this then decisions on treatment withdrawal or continuation are at best arbitrary and without any clear evidence based guidance. In such circumstances what is in the “best interests” of the individual cannot be calculated with any degree of certainty.”

Given the strong wishes of the family which he would treat as paramount, he would advise continuing the treatment.

Dr SW is a consultant neurologist who acknowledges that most of his opinion would be “very general and not specific to the patient concerned.” His view is that in the absence of any other cure or treatment it would be reasonable to consider PPS as treatment for patients with CJD. He agrees that one needs to consider individual cases on their own merit. But he acknowledges that he has not been able to study this case and the circumstances in detail.

Finally Mr NT, a consultant neurosurgeon and spinal surgeon who was able to consider the reports of Dr DH and Professor K. He acknowledges that failure of the pump can prompt reconsideration as to whether that device should be replaced to permit continued treatment or not. He says that he treated the first two patients in the world that were treated with intraventricular Pentosan but “For various reasons I was obliged to stop treating other patients after those first two patients.” He seems to agree that intraventricular Pentosan does not prevent the progressive neurological deterioration that is associated with CJD/vCJD: whether it halts the rate of neurological deterioration is unknown. The potential further surgery that would be needed would in neurosurgical terms lie somewhere between minor and moderate surgery but the risks of surgery are small. There would be some moderate cost implications. His conclusion is:

“32.

In my opinion, there is a duty of care to continue life saving treatment whilst any such decision [as to whether to continue or discontinue treatment] is made. This case is particularly complex in that regard in that we do not know whether discontinuing Pentosan treatment in those small numbers of patients who have been treated with intraventricular Pentosan affects their life expectancy, and of course how could we know? It may be that the benefit to life expectancy occurs after the first dose of Pentosan or after the first month or two of treatment. It may be that continued Pentosan treatment is required to prevent death. We simply do not know.

33.

We do not know the precise mechanism of PPS but in the absence of any adverse effect of treatment [the patient’s] short term best interests are probably to continue PPS (and therefore to replace the pump). This would be mean that all steps had to be taken to preserve [the patient’s] life whilst more complex decisions are taken with regard to [the patient’s] long-term best interests and treatment. The tragedy would be that the court were to find that it is in [the patient’s] long-term best interests to continue treatment with PPS but he dies because treatment was not re-started in the short-term.”

That apparently was the state of the evidence when the matter first came before the President Sir Nicholas Wall on 14th October 2010. The solicitors for the hospital had in their correspondence with the applicant’s solicitors pointed out that there was no evidence from any clinician who would take over the management of the PPS regime. At the hearing the point was taken by counsel for the hospital, as the President put it, “that there was no essential lis or issue for the Court to resolve.” Accordingly the President adjourned the application to 26 October for the applicant to produce evidence from a neurologist to counter that of Dr DH, Professor K and Professor R, directing that the applicant file and serve the expert evidence upon which he seeks to rely in support his application by 25th October 2010.

The matter came back to the President on 26th October 2010. In his judgment dated 2nd November 2010 the President explained what happened at that hearing:

“19.

Unfortunately, no such evidence was produced, although counsel for (the brother) informed me that a neurologist (Dr P) had been identified, and after the short adjournment a letter from Dr P was read to me. That letter, which had been composed at short notice on 26th October 2010 indicated that Dr P was willing to take over the care of [the patient] with the plain implication that the administration of PPS should continue. It is for this reason that I indicated earlier in this judgment that the case may not continue in the court arena. Plainly, if [the patient] is transferred to Dr P’s care, and an NHS transfer occurs, the ongoing administration of PPS to [the patient] will be a matter for Dr P and [the brother], and will not involve the court.”

The President reserved judgment in order to give himself time to read the voluminous evidence thoroughly and he handed down that judgment on 2nd November and ordered that:

“4.

[The brother] file and serve a report from Dr P, a consultant neurologist at a NHS hospital on or before 16th November 2010 that states (a) he is able and willing to take over the care of [the patient] and treat him with PPS and (b) the treatment of [the patient] with PPS is in his best interests.

5.

In the event that [the brother] fails to file and serve such report the proceedings do stand dismissed.”

He also ordered that the Official Solicitor be invited to act as litigation friend but that the brother be joined as a respondent to the proceedings.

No such report was filed by Dr P by 16th November. Thus the matter came before Ryder J. on 16th November who ordered:

“3.

The time provided to the applicant for the production of a report from Dr P shall be extended to 4 pm on 30th November, such report to include his opinion on the best interests of [the patient] in terms of the clinical programme that he intends to put in place.”

No such report was filed and as a result the claim stands dismissed. The applicant now seeks permission to appeal both the orders made by the President on 2nd November and by Ryder J. on 16th November 2010.

The letter to which the President was referring (see [17] above) was from Dr P to Dr DH saying simply:

“I have been asked by this gentleman’s brother … who is his carer, to take him under my care and if that is alright with you, I will take him over. I would be very grateful if you could send me some copies of the relevant medical documentation.”

Dr DH replied on 28th October. He referred to a telephone conversation they had had for Dr P “to assess and take over the management of this patient”. Dr DH then set out in three full pages a “summary” of the clinical presentation and progress, the current neurological status, the current treatment, a summary of medical/neurological complications, the activities of daily living and ended with this summary:

“We are grateful to you for offering to take over the management of this patient. I would be happy to provide any further clinical information about the patient you require to consider transfer. I should be happy to transfer all relevant medical and radiological documents about this patient to you … Professor K will be able to assist … As we discussed, you are also invited to view the patient and his records at [the hospital], if that would assist. You will be aware that his LPA is keen to have the transfer effected as soon as possible.

We would not anticipate transfer back to the [hospital] and I would not be in a position to offer to take over care of this patient again once he has been transferred to your care. Negotiations regarding any further placement (and Pentosan refills) should be discussed directly with [the Primary Care Trust].”

The correspondence from Dr P has been produced. On 9/11/10 he wrote to the brother following his visit to Dr P’s neurology clinic. He said:

“We discussed the option for treatment and I shared with you my good observation of the previous cases in a way that it seems that PPS keeps patients stable for a significantly long time. I also feel that the quality of life of all patients with CJD we treat is severely impaired and that it is difficult to include or exclude patients from treatment on that basis. Additionally [the patient] has been on treatment for all the time until the pump stopped working and his condition was more or less the same as it is now. Thus I decided I would be able to refill the pump if a neurosurgeon agrees to replace it. It needs to be noted, however, that the treatment site may be my decision but the actual procedure will be assessed by neurosurgeons themselves.” (I have added the emphasis to the word “if”.)

“I need to mention that I believe my colleagues were right to take their point of view as the situation is well defined by ethical guidelines. Following them, they also obtained a second opinion from Professor K and he supported their point of view. That means that I agree to treat [the patient] and to try to organise the pump replacements as much as I can, but it should not mean that I disregard their opinion.

We also discussed the logistical side of the whole process and I mentioned that [my Department of Neurology] is only outpatient based so I will be able to provide for [the patient] by refilling the pump and will ask for the relevant surgery. We will not be able to admit [the patient] to [my hospital] for in-patient care unless the discharge plan is done which basically means that he be discharged first from [the treating hospital] to home or to a care home. This is because in-patients in our hospital cannot be admitted under a neurologist’s care.

I will now ask Miss SB to consider refitting the pump. She works as a neurosurgeon in [another hospital] and deals with pumps normally used for Baclofen delivery to the spinal canal for spasticity. If she agrees to undertake the procedure upon my referral, we will take matters from there.”

There is nothing before the court to indicate what Miss SB’s response was.

On 17/11/10 Dr P wrote again to Dr DH saying:

“Thank you very much for discussing this patient with me and for your excellent letter which clarified many things with regard to this patient’s condition. As you know I have been asked by [his brother] to take over his care and I do confirm I do not mind doing it but it needs to be noted that I can offer only out-patient care here in [my Department of Neurology]. We do not accept long-term care in-patients so I suppose out-patient appointments can be organised once [the patient] is discharged back to community care. Obviously we cannot transfer him straight to [this hospital].

You decided that [the patient] should not be treated with Pentosan and I understand that this was following GMT guideline for end of life care and you also obtained a second opinion from Professor K who supported your view. I promised [the brother] to consider taking over [the patient’s] care also with regards to refilling the pump if someone agrees to fit it in. I suppose these considerations can be taken once the patient is discharged from your care as me interfering with any decisions of yours would be most inappropriate for as long as he stays under your department.” (Once more the emphasis is mine.)

“I also understand that [the brother] is in some conflict with the local PCT and/or [the treating hospital] and I do confirm that I categorically do not wish to be involved in that in any way. I hope that this is alright.”

No more has been forthcoming from Dr P.

The first question the President considered was whether or not the brother should continue to be the patient’s next friend in the proceedings. He concluded that whilst making every allowance for the high level of emotion which his brother’s condition generates, it was plain that the applicant did not retain the objectivity which was necessary for the proper conduct of proceedings as next friend. The relationship of trust and confidence between him and the clinicians treating the patient had broken down completely and the nature of his criticisms and the way in which he made them did not serve to address the critical issue in the case. For that reason he concluded that the patient needed a different next friend for the purposes of the litigation and so he invited the Official Solicitor to act as the patient’s litigation friend, the brother being joined as a respondent to the proceedings.

The really critical issue in the President’s judgment was whether the administration of PPS was in the best interests of the patient because if it were it would certainly be in his best interests to undergo the surgery which would permit that to happen. In the President’s view it was immediately apparent that the clinical opinions of Dr DH, Professor K and MR were “all one way”.

“18.

… It was for this reason that when the matter first came before me for directions on 14th October 2010 the point was taken by counsel for the Trust that there was no essential lisor issue for the court to resolve. I accordingly adjourned the application to 26th October [for the brother] to produce evidence from a neurologist to counter that of Dr DH, Professor K and Dr MR.

19.

Unfortunately, no such evidence was produced although counsel for [the brother] inform me that a neurologist (Dr P) had been identified, and after the short adjournment a letter from Dr P was read to me. That letter which had been composed at short notice on 26th October 2010, indicated that Dr P was willing to take over the care of [the patient] with the plain implication that the administration of PPS would continue. It is for this reason that I indicated [in my introduction to] this judgment that the case may not continue in the court arena. Plainly, if [the patient] is transferred to Dr P’s care, and a NHS transfer occurs, the ongoing administration of PPS to [the patient] will be a matter for Dr P and [the brother], and will not involve the court.”

Having recounted what had happened on 14 October and how Dr P’s letter was read to him (see [16] and [17] above), he then analysed the evidence which the brother had assembled and continued:

“22.

In these circumstances I must give directions on the basis that the case remains in court and that the lispotentially identified by Dr P remains. At the same time, it seems to me that both the court and the trust are entitled to know what Dr P’s position is. I therefore came to the view that the proper course was to direct that the current proceedings should stand dismissed at the expiration of 14 days from the date on which this judgment is handed down unless within that time [the brother] files a report from Dr P in answer to the reports by Dr DH, Professor K and Dr MR identifying a proper issue for the court’s determination.

23.

I take this robust view of the case for one quite simple reason. On 14th October 2010 it was argued on [the brother’s] behalf that clinical opinion was not necessarily determinative of a “best interest” enquiry by the court. As a broad generalisation, I do not disagree with that proposition, and I certainly accept that the court’s “best interests” analysis embraces all the circumstances of the case, of which clinical opinion is but one part.

24.

At the same time it strikes me as unlikely in the extreme that the court would order a clinician to undertake a medical intervention which he, the clinician, did not believe to be in the best interests of the patient. Absent a clinical opinion that the continued administration of PPS would be in the best interests of the patient, therefore, it seems to me that the current proceedings would be doomed to failure. In my judgment, therefore, these proceedings should stand dismissed unless Dr P provides a report properly identifying the lisupon which the court is being asked to adjudicate.

25.

Nothing, of course, in this judgment, prevents Dr P from (a) producing his report and/or (b) taking over [the patient’s] care. In the latter event, the proceedings will no doubt be dismissed by consent in due course for that reason. My directions, however, must be predicated on the premise that the proceedings continue. To that end, Dr P needs to report.”

He then gave his directions. He referred to the Court of Protection Rules giving him the power to control the evidence that is given and the other wide case management provisions in the Rules. He recognised the duty under Article 6 to ensure a fair hearing and he recognised that dealing with matters of life and death inevitably aroused strong emotions. Bearing all that in mind he gave permission to the Trust to call Dr DH, Professor K and Professor R. As for the claimant’s witnesses, their principal witness would be Dr P. Dr McC, Dr CP and Mr S talking about his son’s case added nothing. The points made by Dr IB could be made by others so there was no point in his being called. Professor MR is a neurosurgeon who considered that surgery would be easy and relatively risk free which did not add much to the case so he should not be permitted to give evidence. A nurse could be called. The main medical witness tendered by the brother was Mr NT whose evidence was “thoughtful and well-argued” so permission should be given for him to be called. Permission should also be given for Dr SW to be called.

The President was not asked for permission to appeal but, after a lengthy hearing, Thorpe L.J. adjourned the application for permission to appeal to the full Court with the appeal to follow if permission were granted. He allowed two and a half hours for the hearing of that appeal and this Court was urgently assembled to deal with it before the end of term.

The first submission is that the President was wrong to find there was no relevant lis pendens: the evidence submitted by the brother was sufficient to reveal a live issue as to what was in the best interests of the patient. The second submission was that this was not one of those wholly exceptional cases where the court might properly make an unless order. The third submission, closely allied with the first, was that the President had incorrectly analysed the evidence in giving directions as to what evidence was to be called. The fourth point was that it was wrong to substitute the litigation friend. Finally it was submitted that having regard to the urgency, a final hearing ought to have been fixed for resolution of the issues before the court.

Dealing first with the position of the brother as litigation friend, Rule 140 of the Court of Protection Rules 2007 provides that:

“140.

—(1) A person may act as a litigation friend on behalf of a person mentioned in paragraph (2) if he—

(a)

can fairly and competently conduct proceedings on behalf of that person; and

(b)

has no interests adverse to those of that person.”

The argument is that there is no suggestion that the brother has any interest adverse to that of the patient: he is doing what he genuinely believes the patient would want. The attack on the hospital may raise the temperature in the litigation but does not imperil its fairness. Leading counsel are instructed and the proceedings are in competent hands. I see the force of these arguments.

As to whether there was a lis, I again see the force of the argument that however weak the claimant’s case may seem compared with that of the hospital, there was, at least for the purpose of a directions hearing, enough division of medical opinion which, combined with the family’s own view of where the patient’s best interests lie, would justify the matter going forward for resolution of the issue of where the patient’s best interest lay. This is not a case for an interim hearing because once the pump is replaced, it is not likely on a full hearing that a court would order a further operation to remove it. The proper course would be to convene an urgent final hearing and the court’s resources are sufficient to ensure such a hearing in a truly urgent case. The court undoubtedly has the power to make an unless order in an exceptional case and it may be that there could be arguments about whether or not this was indeed that truly exceptional case.

Whilst, therefore, it may be that there was a real prospect of success for each of those arguments and thus scope for granting permission to appeal, I would nonetheless refuse permission because like the President, but for slightly different reasons, I regard these proceedings as “doomed to failure”.

I reach that conclusion for these reasons. It is well established that the court does not decide hypothetical questions. R v Home Secretary ex parte Wynne [1993] 1 W.L.R. 115 is one of the line of authorities establishing that proposition. R v Secretary of State for the Home Department, ex parte Salem [1999] 1 A.C. 450 is another. In the latter case Lord Slynn of Hadleigh said at p. 456/7:

“My Lords, I accept, as both counsel agree, that in a cause where there is an issue involving a public authority as to a question of public law, your Lordships have a discretion to hear the appeal, even if by the time the appeal reaches the House there is no longer a lis to be decided which will directly affect the rights and obligations of the parties inter se. … The discretion to hear disputes, even in the area of public law, must, however, be exercised with caution and appeals which are academic between the parties should not be heard unless there is a good reason in the public interest for doing so …”

In R (Burke) v General Medical Council [2005] EWCA Civ 1003, [2006] Q.B. 273 the claimant suffered from a congenital degenerative brain condition which would at some time in the future inevitably result in his needing to receive nutrition and hydration by artificial means. He was concerned that a decision might be taken by medical practitioners responsible for his care to withdraw that treatment from him when he wished to continue to receive it, regardless of his pain or suffering. In order to obtain clarification as to the circumstances in which treatment might lawfully be withdrawn, he claimed judicial review of guidance issued by the General Medical Council by way of declarations to the effect that the guidance was incompatible with his rights at common law and under the ECHR. Munby J. granted the declarations. On appeal, Lord Phillips of Worth Matravers M.R., giving the judgment of the Court held:

“21.

There are great dangers in a court grappling with issues such as those that Munby J has addressed when these are divorced from a factual context that requires their determination. The court should not be used as a general advice centre. The danger is that the court will enunciate propositions of principle without full appreciation of the implications that these will have in practice, throwing into confusion those who feel obliged to attempt to apply those principles in practice. This danger is particularly acute where the issues raised involve ethical questions that any court should be reluctant to address, unless driven to do so by the need to resolve a practical problem that requires the court's intervention. We would commend, in relation to the guidance, the wise advice given by Lord Bridge of Harwich in Gillick v West Norfolk and Wisbech Area Health Authority [1986] AC 112, 193-194:

"the occasions of a departmental non-statutory publication raising ... a clearly defined issue of law, unclouded by political, social or moral overtones, will be rare. In cases where any proposition of law implicit in a departmental advisory document is interwoven with questions of social and ethical controversy, the court should, in my opinion, exercise its jurisdiction with the utmost restraint, confine itself to deciding whether the proposition of law is erroneous and avoid either expressing ex cathedra opinions in areas of social and ethical controversy in which it has no claim to speak with authority or proffering answers to hypothetical questions of law which do not strictly arise for decision."”

The most recent in that consistent line of authority is Gawler v Raettig [2007] EWCA Civ 1560.

In my judgment this case raises just the kind of academic or hypothetical appeal which we should decline to entertain. The relief being sought is that the court grant declarations:

“(ii)

that it is in the best interests of [the patient] for the infusion pump necessary for the administration of intraventricular PPS to be replaced,

(iii)

that it is in the best interests of [the patient’s] for the administration of intraventricular PPS to continue.”

One has to ask, therefore, what purpose will be served by such declarations. A finding, not necessarily a declaration, that a course of treatment is, or is not, in a patient’s best interest is usually the essential gateway to a declaration that such treatment would, or would not, be lawful. It is trite that the court will not order medical treatment to be carried out if the treating physician/surgeon is unwilling to offer that treatment for clinical reasons conscientiously held by that medical practitioner. The court’s intervention is sought and is necessary to overcome a reluctance or reticence to undertake the treatment for fear that doing so would be unlawful and render him or her open to criminal or tortious sanction. It is significant that the court’s power to make declarations under the Mental Capacity Act 2005 is conferred by section 15 of the Act in these terms:

“(1)

The court may make declarations as to –

…

(c)

the lawfulness or otherwise of any act done, or yet to be done, in relation to that person.

(2)

“Act” includes an omission and a course of conduct.”

Section 1(5) of the Act sets out the principles underpinning the Act and provides:

“1(5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interest.”

Even if, as the applicant contends, there is a sufficient dispute about whether or not the continued infusion of PPS is in the best interests of the patient and whether, therefore, the pump should or should not be replaced, there is no question of the respondent hospital hindering or preventing the transfer of the patient to the care of any physician or surgeon who, contrary to their own views, sincerely believes that the procedure is in the interests of this patient and is willing to provide it. If Mr NT is prepared to operate and can find a hospital where the operation can take place, the respondent hospital will co-operate in the transfer of the patient. If Dr P can provide the treatment, the hospital will discharge the patient from their care to his. The fact that the respondent hospital does not believe that the placement of the pump and the continuation of infusion are in the patient’s best interest simply does not matter if a medical practitioner who takes the other view will accept responsibility for the patient. The transfer of the patient to another’s care would take place co-operatively and no approval from the court is required to enable that transfer to take place.

The harsh fact is that, although Mr NT and Professor R are willing to replace the pump, there is no evidence of their present ability to do so. No hospital has been identified where that surgery can be undertaken. Without a new pump being inserted, there is nothing Dr P can do. This litigation is going nowhere. What the court is being invited to do is no more nor less than to declare that if a medical practitioner is ready, willing and able to operate and if a medical practitioner is willing, ready and able to replenish the supply of PPS, then it would be in the best interests of the patient to do so. The President was correct to identify the need for evidence from Dr P to plug this gap in the claimant’s case. Without that evidence that someone is “able and willing to take over the care of [the patient] and treat him with PPS”, we are dealing with a purely hypothetical matter. A declaration of the kind sought will not force the respondent hospital to provide treatment against their clinicians’ clinical judgment. To use a declaration of the court to twist the arm of some other clinician, as yet unidentified, to carry out these procedures or to put pressure upon the Secretary of State to provide a hospital where these procedures may be undertaken is an abuse of the process of the court and should not be tolerated.

Like the President, I have also reached the conclusion that the continuation of this litigation by permitting a lengthy hearing to be urgently arranged for numerous busy medical practitioners to be cross-examined truly would be “doomed to failure”. If there are clinicians out there prepared to treat the patient then the patient will be discharged into their care and there would be no need for court intervention. If there is no-one available to undertake the necessary operation the question of whether or not it would be in the patient’s best interests for that to happen is wholly academic and the process should be called to a halt here and now.

For those reasons I would refuse permission to appeal. I have set the matter out at greater detail than would ordinarily be necessary for the refusal of permission because, if Patten and Black L.JJ. agree, I would give permission for this judgment to be reported and cited in future.

I agree.

I also agree.