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AVS v A NHS Foundation Trust [2010] EWHC 2746 (COP)

At a directions appointment, a stage of ‘the utmost importance’, the Court of Protection has to identify the issue to be determined, decide upon the evidence required to resolve the issue and examine the evidence in light of the COPR 2007, the overriding objective and the duty under ECHR Article 6 to legislate for a fair hearing.

CS issued proceedings in relation to his brother, AVS, who suffers from sporadic Creutzfeldt-Jakob disease (CJD) and is incapable of conducting his affairs. CS invited the Court to determine whether it was in AVS's best interests to undergo surgery to replace an infusion pump and to continue administration of intraventricular PPS.

The clinical evidence relied on by the NHS Trust did not support continuation with PPS treatment. However CS had identified a neurologist, Dr P, who expressed a willingness to assume the care of AVS with the implication that PPS treatment should continue.

The Court determined that AVS's interests required 'a dispassionate assessment by a professional third party', that CS lacked objectivity and accordingly the Official Solicitor would be invited to act.

In making directions for the future progression of the case the Court had to identify the issue to be determined and then decide what evidence is required to resolve the issue and examine the evidence in light of the Court of Protection Rules 2007, the overriding objective and the duty under ECHR Article 6 to legislate for a fair hearing.

The Court identified the critical question as being, 'is it in AVS's best interests that PPS continues to be administered to him'. Directions were given on the basis that the lis potentially identified by Dr P remained. However the proceedings would stand dismissed after 14 days unless CS filed a report from Dr P responding to the NHS Trust's clinical evidence and thereby identifying a proper issue for determination. In the event that the proceedings continued the Court limited the number of medical and non-medical witnesses to be called.

Summary by Elise Kinnear, barrister, of Field Court Chambers

Neutral Citation Number: [2010] EWHC 2746 (COP)
Case No: COP11903702

Royal Courts of Justice
Strand, London, WC2A 2LL

Date: 02/11/2010

Before :
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Between :

Re AVS Applicant

 - and - 

A NHS Foundation Trust Respondent

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Jeremy Pendlebury (instructed by Michelmores) for the Applicant
Fenella Morris (instructed by Hempsons) for the Respondent

Hearing dates: 25 October 2010
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I direct that pursuant to CPR PD 39A para 6.1 no official shorthand note shall be taken of this Judgment and that copies of this version as handed down may be treated as authentic.

This judgment is being handed down in private on 2 November. It consists of 10 pages and has been signed and dated by the judge.  The judge hereby gives leave for it to be reported.

The judgment is being distributed on the strict understanding that in any report no person other than the advocates or the solicitors instructing them (and other persons identified by name in the judgment itself) may be identified by name or location and that in particular the anonymity of the children and the adult members of their family must be strictly preserved.

Sir Nicholas Wall P :
1. This is a directions appointment in a very sad case. I have, however, made it clear on many occasions that I regard such appointments are being of the utmost importance in proceedings of any kind. This case is no exception. Although, therefore, I have indicated to the parties what I am minded to do, I have taken a short time to formulate my reasons. This will, accordingly, be a public judgment, although I have anonymised the various participants. Nothing must be published which at this stage, identifies anyone other than the lawyers in the case by either name or location.

2. It is possible, as this judgment will make clear, that the case will not continue in the court forum. Whether it does or not, I wish to make it as clear as I can that I have formed no view on what is in the best interests of the patient. I am giving directions in the event that the case remains in court. Despite its length, that is the sole purpose of this judgment.   

The Facts and the issue in the case
3. The patient, whom I will call "AVS" suffers from sporadic Creutzfeldt-Jakob Disease (CJD).  He is currently in hospital, and according to Dr DH, a consultant neurologist at the hospital, AVS, over the 18 months to September 2010 "has no evidence of awareness of self or environment". It is not clear that AVS is in a persistent vegetative state (PVS) and his family remain certain that he continues to respond to stimuli. On any view, however, AVS is incapable of conducting his affairs, and, by consent,  I declared on 14 October 2010 that he lacked capacity both to instruct solicitors in these proceedings and to make decisions as to his medical treatment and care.

4. The Application Form, which was issued out of the Court of Protection on 8 October 2010 by AVS's brother  CS,  states simply: -

"From June 2008 (AVS) has received Pentosan Polysulphate (PPS) by way of intraventricular infusion. He has received no PPS since around 26 August 2010 when the infusion pump malfunctioned. Clinicians at (the hospital) have concluded that it is not in AVS's best interests to continue administering PPS and that the infusion pump should not be replaced.

The Court is asked to decide, as a matter of urgency, whether it is in the best interests of AVS:

to undergo surgery to replace the infusion pump; and

for the administration of PPS to continue thereafter."

5. Although the application form divides the issue to be decided by the court into two, the evidence is that (1) above carries minimal risk to AVS and that the real issue is (2). In other words, (1) is dependent upon (2). Thus, if the court were to decide that PPS should continue to be administered to AVS, it would be in his best interests to undergo the surgery which would permit that to happen.

6. AVS was diagnosed as suffering from sporadic CJD in May 2008. AVS's family requested the institution of treatment with intraventricular PPS, and AVS was referred to a hospital in Scotland, where the appropriate pump was inserted by a team under the overall direction of Professor K. Thereafter, AVS was returned to the hospital and continued to be administered PPS by means of the pump. On or about  26 August 2010 (or 27 July according to CS's first witness statement) the infusion pump malfunctioned and the administration of PPS to AVS ceased.

The way CS puts the case
7. CS's case is summed up in the Application Form: -

There is evidence to indicate that the administration of PPS to patients suffering from CJD slows and / or  halts the progress of the disease and / or prolongs life……. there is no evidence to suggest that  there are any adverse side effects from the administration of PPS but evidence of improvement in condition.

At the time of diagnosis  in May 2008, the prognosis for (AVS) was that he was unlikely to survived more than 3 to 4 weeks. He had in fact survived two and a half years  since diagnosis. He received PPS from June 2008 until the infusion pump malfunctioned. The administration  of  PPS is therefore very likely to be the reason why the progress of the disease has been slowed and / or  halted, and (AVS's) life lengthened. The continued administration of PPS is therefore likely to to be beneficial to (AVS) and is most unlikely to be detrimental to his welfare. The application is urgent since discontinuing the delivery of PPS for more than a few weeks is expected to result in increased damage and death of previously functioning cells.

Should CS be AVS's next friend in the proceedings?
8. As I have already stated, CS is AVS's brother. He also holds a Lasting Power of Attorney dated 9 June 2008, and registered with the court on 23 October 2008. A copy is annexed to CS's first witness statement. It empowers CS to make decisions on AVS's behalf.

9. Nothing in what follows is to be taken as any criticism of CS. I have, however, taken the opportunity, provided by reserving my judgment in this application, to re-read the documents, including CS's two statements in this case. It is immediately apparent from the documents (I have, of course, heard no oral evidence); (1) that the relationship of trust and confidence between CS and the clinicians treating AVS has broken down completely; and (2) whilst making every allowance for the  high level of emotion which his brother's condition  generates, it is plain to me that CS does not retain the objectivity which, in my judgment, is necessary for the proper conduct of proceedings as a next friend

10. The first proposition (1) in the previous paragraph is not. I think, in issue. Indeed, in paragraph 86 of his second statement, CS says in terms that he has "lost total confidence in the bona fidei of the Trust". This is,  in my judgment, most unfortunate and makes the court's ultimate task more difficult. However, CS gives abundant evidence of it in his two statements. As examples:

(1) he talks in paragraph 23 of his first statement of being "generally treated with hostility" by the hospital when he and his family wished to proceed with the administration of PPS; with the consequence that the procedure had to be carried out by a clinician outside the hospital in Scotland;

(2) he accuses Dr DH of misleading him over the reasons for the malfunctioning of the pump;

(3) he accuses Dr DH of being "wrong and misleading" in telling him that PPS remained within the device and was still being infused as at 28 July 2010;

(4) he accuses Dr DH of "inaccuracy" in the content of an Email sent by Dr DH to CS on 29 July 2010 and of exposing AVS to "risk";

(5) he talks of Dr DH's failure to make "any attempt to apologise" for the events which have taken place.

11. As to the latter point (2), I have already expressed my sympathy for the position in which CS and other members of his family find themselves. However, I do not find the tone either of CS's statements or of his Emails helpful, and the following strike me as demonstrating a lack of objectivity. For example,  he uses the word "beseech" in asking the court to find that it is in the best interests of AVS for the administration of PPS to be continued. I would not normally pick up on such a semantic point, but CS, I remind myself, is a solicitor in practice.

12. CS also describes Dr DH's attitude as "bullish and far from transparent", and accuses  Dr DH  of "deliberately misleading" him in relation to the pump running dry.  He says that he will hold DH "personally responsible for any precipitous conduct which is clearly not in (AVS's) best interests". He refers to the trust intending to hold his brother "hostage" to prevent the treatment continuing. He  also states: -

(1) A slight movement of the lips at an attempted grin, groan or grimace or movement of the head or eyes in which we perceive to be the acknowledgement of a comment is more wonderful than any words will allow me to express (first statement paragraph 86); and

(2) [talking of the devoted support given by members of this family]  I believe that such support by my family has added to my brother's comfort and general quality of life despite all the adversity that my brother and my family have encountered at (the hospital) which is, regrettably, continuing (ibid, para 87).  

13. These comments are understandable, but in my judgment they neither address the critical issue in the case, nor do they demonstrate the objectivity with which the litigation needs to be approached. It follows, in my judgment, that AVS needs a different next friend for the purposes of the litigation.

The position of the trust
14. On 8 September 2010, Dr DH wrote to Professor K asking him for his opinion on the continued administration of PPS to AVS. It is a long letter, running to 4 pages. Professor K's response is also lengthy, and runs to 12 pages of single spaced A4. I do not propose to set out either all the questions he was asked or all of his answers. However, he does express a number of important and in some cases unequivocal conclusions. PPS, he says, has not been assessed in any formal human clinical trial.  "In general terms, the evidence such as it is for PPS would suggest that any benefit would be in slowing disease progression rather than halting disease progression and it is certainly not a cure". He acknowledges that AVS is still alive some 2 years and 8 months from onset, but simply does not know whether PPS treatment has had any efficacy in AVS's case.

15. Most important, perhaps, is Professor K's answer to the question: "Is it in the best interests of the patient to replace the PPS pump and to continue PPS indefinitely?" He rightly describes these as "the fundamental questions" relating to the case. Professor K finds the question of continuing PPS "exceedingly difficult". However, his final view is unequivocal: "it would not be reasonable to continue with treatment".

16. I do not propose to analyse his reasoning. This, for obvious reasons, is not the appropriate time to do so. I simply note his opinion, and the fact that he had discussed the question with CS.

17. There is also in my papers a "second opinion report" from a professor of clinical neurology, Dr. MR and dated 9 September 2010, which reaches the same conclusion as Professor K.

18. It will thus be immediately apparent that the clinical opinion so far described is all one way. It was for this reason that when the matter first came before me for directions on 14 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  26 October for CS 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 CS 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 26 October 2010, indicated that Dr P was willing to take over the care of AVS,  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 AVS is transferred to Dr P's care, and a NHS transfer occurs, the ongoing administration of PPS to AVS will be a matter for Dr. P and CS, and will not involve the court.

The evidence assembled by CS
20. The evidence which CS had assembled comprised the following:

(1) two statements by himself, with exhibits, to which I have already made extensive reference. CS is, of course, a solicitor, not a doctor;
(2) a statement by Dr MC, the general practitioner to a different, variant CJD sufferer;
(3) a statement by the father of Dr MC's patient;
(4) a statement by Professor IB, a consultant neurologist;
(5) a statement from Dr CP, a research neurophysiologist;
(6) an "expert opinion" from Dr. NR, a Professor of Surgery from Augsburg;
(7) a medical report from Mr. NT, a consultant neuro-surgeon; and
(8) a letter from Dr SW, a consultant neurologist.

21. In addition, counsel informed me that : -

(1) CS wished to adduce the evidence of one of the Trust's nurses, whose identity was not revealed and who would be likely to appear by means of a witness summons; and

(2) Dr P, a consultant neurologist, had written a letter and was prepared to take over AVS's case.

The future of the proceedings
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 opinion 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 on that time CS 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 14 October 2010 it was argued on CS's behalf that clinical opinion was not necessarily  determinative of a "best interests" 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 AVS'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, and to that end, Dr. P needs to report.

26. On the assumption that the proceedings continue. the critical question which I have to ask myself seems to me to be the following: what is the issue which I have to determine?  I will need then, it seems to me, to decide what evidence I need to resolve that issue and  to examine it in the light of (a) the Court of Protection Rules in general and (b) the Overriding Objective in particular.

27. The critical question plainly is: "is it in AVS's bests interests that PPS continues to be administered to him?"

28. As I understand the Court of Protection Rules 2007, (COPR) I have the power, under COPR rule 95(a) to control the evidence that is called by giving directions as to the issues on which I require evidence, the nature of the evidence I require and the way in which evidence is to be placed before the court. I can also use my power under rule COPR 95(b) to exclude evidence that would otherwise be  admissible. I can allow or limit cross-examination (COPR 95(c) and I can admit such evidence whether written or oral, as I think fit. The rules relating to experts (COPR 119 et seq) are stricter – see, for example, COPR 123.

29. On the other hand, I need to recognise here that I am dealing with matters of life and death, and that strong emotions have been aroused. I have a duty under ECHR Article 6 to legislate for a fair hearing, and in particular, whatever I decide, I do not want the unsuccessful party to leave the court feeling that he or it has not had a fair hearing.  In addition, I must remember that I am dealing in large measure with professionals, who lead busy lives and have many calls on their time.

30. Against this background, I turn to my directions. I was addressed by counsel under  two broad headings; (1) Discovery – in particular medial records; and (2) evidence, both lay and expert. There was also disagreement over the likely length of the hearing, and whether or not CS should be appointed  AVS's next friend in the proceedings, or whether it was more appropriate to invite the Official Solicitor to act.

31. Since the issue which I may have to determine is whether or not the continued administration of  PPS to  AVS  is in his  best interests, the first question is medical. In this respect, it seems to me that the critical witnesses are Professor K for the Trust and Dr. P for AVS. There will, accordingly, be permission to the Trust to call Professor K as a witness. There will be (as I have already indicated) an order that Dr. P file a report within 14 days with permission for him to file an addendum at any point up to five working days before the date fixed for the final hearing should he wish to do so. Provided he files his report(s) CS may call him as a witness.

32. A serious attack is made by CS on the bona fides and competence of Dr. DH whom CS will no doubt wish to cross-examine. Although Dr DH is in part a witness of fact, he is also the principal treating clinician, and the Trust will have permission to call him.

33. The Trust is also relying on the opinion of Dr. MR, and in my view permission should be given to call him.

34. On the medical front, CS's principal witness will be Dr. P.  Dr MC, in my judgment, adds nothing to the case. He is a General Practitioner: he is talking about a different patient, with a different variety of the disease. Whilst I do not doubt his competence as a general practitioner, his evidence, in my judgment, adds nothing to the case, and I refuse permission for him to be called.

35. Dr IB makes the point that the failure of the pump should not have been used as a basis for discontinuing the administration of PPS. That is a point which others, including CS can, and do make. I see no purpose, therefore, in Dr IB being called.

36. Professor NR is a neuro-surgeon. His view is that PPS does not represent a cure, but that "most authors….. have concluded that the administration (of PPS) is able to slow down to a high degree the progression of the disease".  Surgery would be easy and relatively risk free. I do not think that his evidence adds anything to the case, and I refuse permission for him to be called.

37. Dr NT's evidence is thoughtful and well argued, and in the interest of a "level playing field" as counsel called it, I give permission for him to be called. If Dr NT finds, as a result of seeing AVS and reading the medical records he need to file an updated report, he, like Dr P,  is to be at liberty to do so, provided that report is filed no later  than five working days before the date fixed for the final hearing

38. This leave the non-medical witnesses.  Mr. S talks about his son's case, and the points he makes can be made by CS. I see no purpose in him being called. Dr. CR is a scientist, not a medical doctor, who has experience of  Mr S and his son. I see no aspect of his evidence which cannot be covered by CS and do not think that he adds anything to the case. In my judgment, he should not be called.

39. In my judgment, the medical witnesses whom I have "left in" (Professor K. Drs. DH and  MR for the Trust; Drs P and NT for CS) allow the critical issue to be appropriately ventilated. In addition to which, of course, there will be the evidence of CS.

40. I propose to allow the nurse to be called. He or she must, however, file a statement in which he or she identified him or herself within 14 days.

41. If any of the foregoing professional witnesses cannot come to court, the parties should consider whether or not their evidence can be given by video link.

42. Plainly Drs  P and NT need to see whatever documents and records are necessary for them  finally to formulate their respective opinions. It is for this reason that I have given leave for them to file addenda reports. I propose to direct that discovery be given by the Trust of such documents as Dr. P and NT identify as necessary for the writing of their reports. I am not prepared to make a blanket order for the nursing records without knowing what the nurse is going to say.

43. There will, if course, be a general liberty to apply to myself on short notice.

44. In my judgment, two days should be more than sufficient to dispose of the case. I do not propose to identify any specific date, but leave the fixing of the date to counsel's clerks.

45. I am also not fixing a date because I have reached the clear view that it would be appropriate for AVS to be represented by the Official Solicitor, subject to the latter's  consent. For the reasons I have already canvassed, I do not think that CS has a view of this case which is objective, and I am satisfied that what AVS's interests require is a dispassionate assessment by a professional third party. The Official Solicitor is well placed to make that assessment. The Trust should, accordingly make the documents in the case (including this judgment)  immediately available to the Official Solicitor. If, for any reason, the Official Solicitor declines to act, the case should be immediately restored to me for hearing and for an alternative  next friend to be considered  

46. Whether or not the Official Solicitor (assuming he consents to act)seeks to make an independent medical assessment of AVS I propose to leave to the judgment of the Official Solicitor. I give him permission to make such an assessment  if so advised. Plainly, the provisions as to discovery will apply mutatis mutandis to any expert instructed by the Official Solicitor.

47. In my judgment, there should be a meeting of the medical experts I have identified ass giving evidence, including the expert instructed by the Official Solicitor if such an expert is instructed. That meeting can, if need be, take the form of a telephone conference, and should take place no later than 10 days before the date fixed for the final hearing. .  There should, moreover, be a minute taken of what is said at the meeting (which is not to be "without prejudice" or otherwise privileged) and a summary of the outcome of the meeting should be prepared. Quite how that is achieved I will leave to the parties. If the Official Solicitor does come into the case I direct that the meeting be minuted by his representative. If he does not, the meeting should be minuted by a independent third party agreed between the Trust and CS. I look to the parties to cooperate in this respect.

48. I hope this judgment covers the ground. I should be most grateful if counsel could draw the order on the basis of my directions. Any difficulty should be capable of resolution between counsel, alternatively by myself on application made by either party on short notice by Email to my clerk.

49. Since this judgment was prepared in draft and circulated to the parties, I have received submissions about additional witnesses. SC wishes to call (1) his partner; and (2) a neurologist, Dr. W. In relation to the former, the rationalisation is that CS's partner "can give evidence on the patient's level of response and on his historical level of response whilst being administered PPS". As to the latter, the argument is that the Trust will be calling three neurologists, and that CS only has permission to call one. This, it is argued, does not achieve a level playing field.

50. Having re-read Dr W's statement, I am prepared to give permission for him to be called, although I do not think that his evidence adds greatly to the case. In the absence of a statement from the nurse (see paragraphs 21(1) and 40 above) I am not at present minded to allow CS to call his partner. I am, however, prepared to reconsider admitting the evidence of CS's partner on further application made to me either in writing or on short notice.  It is, of course, a pre-condition of any such application that the Trust is given notice of it, and enabled to comment on it.