COURT OF APPEAL (CIVIL DIVISION)
ON APPEAL FROM THE COURT OF PROTECTION
THE RT HON. SIR NICHOLAS WALL, P
Strand, London, WC2A 2LL
B e f o r e :
LORD JUSTICE PATTEN
LADY JUSTICE BLACK
(by his litigation friend CS)
|- and -
|(A) A NHS Foundation Trust
(2) The B PCT
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Mr Stephen Miller QC (instructed by Hempsons) for the First Respondent
Mr Michael Mylonas (instructed by Bevan Brittain) for the Second Respondent
Hearing date: 15th December 2010
Crown Copyright ©
Lord Justice Ward:
The sad background
"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."
"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."
"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.
"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.
"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.
"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."
"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."
"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.
"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."
Dr P's position
"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]."
"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.
"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 judgment under appeal
"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 lis or 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  and  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 lis potentially 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 lis upon 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."
The grounds of appeal
"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.
"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 …"
"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  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.""
"(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."
"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."
Lord Justice Patten:
Lady Justice Black: