England and Wales High Court (Family Division) Decisions

IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION

		Royal Courts of Justice Strand, London, WC2A 2LL
		21/10/2005

The Honourable Mr Justice Hedley :

INTRODUCTION

1. This is the fourth judgment that I have given in this case. The two full earlier judgments given on 8^th October, 2004, and 21^st April, 2005 are both public documents, and I do not intend to repeat their contents here beyond what is necessary to explain my decision today. Although the Court of Appeal dismissed the appeals of Mr and Mrs W, they referred the case back to me as it appeared to them that there may have been changes in CW's condition significant enough to warrant re-consideration by the Court.
2. Of course, the condition of a child of this age is rarely static for long. It will either improve or deteriorate and hence my order of 21^st April had a review built into it. However, a detailed reconsideration of the medical evidence was advanced at the behest of the Court of Appeal. Experts previously instructed were consulted again, CW was further examined and new reports were submitted. The court was also greatly assisted by the written and oral evidence of Dr 'K', CW's new and current treating paediatrician.
3. I remind myself, as all parties have recognised, that there is no presumption in favour of the continuation of these (or any) Declarations, and that the burden of establishing the case for declaratory relief lies firmly on the hospital. I remind myself too, that on this occasion there was a high degree of agreement in the medical evidence.

CW's PRESENT CONDITION

4. In the words of her consultant paediatrician Dr 'K' "This is a highly unusual case for a large number of reasons, not least of which is that CW has defied all the previous case studies and predictions by staying alive." Much, however, remains the same. Although she has experienced some growth, she remains, in all respects, below the 0.4 Centile. She still has significantly damaged kidney function. She has some of the attainments of a baby of 2-3 months old. She has gross, irreversible brain damage. She still has the gravest chronic lung disease; indeed it was described by two very experienced experts as the worst each had ever seen in a living child.
5. All that said, however, there is, in relative terms, real progress to report. There has been some, albeit, very limited progress in her neurological functioning. There has been some slight growth and some weight gain. Most importantly there has been discernible progress in the condition of her lungs. Her requirement for oxygen has fallen to the point where she no longer need stay permanently in her headbox, but can be sustained by oxygen delivered through nasal cannulae. This has the practical effect that she may leave the ward and even briefly the hospital building. Dr 'K' now takes the view that she has a real prospect of surviving the forthcoming winter. Against that must be balanced the unanimous professional view that she continues to have a very severely impaired life expectancy.
6. Mr W told me that they are working towards CW's discharge home next March. Apart from her survival without further deterioration until then, her return home is dependent on two matters: first, the putting in place of an inevitably complex care package; and secondly, CW's dependency on oxygen being reduced from the present 40% - 50% to at least a stable 30%, so that she does not require her headbox. That is an aim to which all are committed, and an outcome that all (including the court) would be delighted to see come about.
7. It will be apparent then, that although CW's improvement may be slight, it is nevertheless significant. The question is as to what implications, if any, this improvement has for her future treatment. The answer on a day-to-day basis is probably very little, except in the event of deterioration. It is on how that is to be managed that much professional attention has been focussed.

THE QUESTION OF VENTILATION

8. There has been very significant development on the issue of ventilation. Dr 'K', supported by the expert evidence, can now see circumstances in which he would be prepared to ventilate CW in the event of respiratory distress. He put it this way: "……..I feel that we have crossed an invisible line whereby I can say to the Court that there are now circumstances where, given the wishes of her parents and given the chances of a successful outcome, it would be justifiable for CW to be ventilated." It is equally apparent, from his evidence, that it is not in all circumstances that ventilation would be right.
9. Dr 'K' postulates three sets of circumstances in which the question of ventilation might arise. First, there might be a catastrophic event, such as cardiac arrest, or respiratory collapse consequent on a virulent infection. Of that he says, "In these circumstances I still feel that it would be wholly inappropriate to ventilate CW." Mr and Mrs W agree with that at least in respect of cardiac arrest. The second scenario is of a gradual deterioration in her lung function so that it slips back to where it was in October last year. Dr 'K' adds, "However, it would be far more serious because her condition would have been on a downward and unstoppable trajectory." Ventilation in those circumstances would be futile and thus wrong. There is, however, an intermediate third position, where there is an infection or other decline that may be thought reversible, described as "a reasonable or realistic chance" that we could bring her back to her present condition (or at least to a tolerable condition) as in March 2005. In these circumstances ventilation may well be justified.
10. However, Dr 'K' then went on, (and was once again supported in this by the expert evidence), to make it crystal clear both that it was quite impossible to define in advance the circumstances in which ventilation would be justified, and also that it would be quite wrong to prescribe a pre-determined length of time for which it would be right to ventilate. Everything would have to depend on the clinical picture at the time that the ventilation decision was required. His evidence was wholly unambiguous on both points and I have no doubt that he was right on both points. That being the case, I must now turn to the question of the Declarations.

THE PURPOSE OF DECLARATORY RELIEF

11. The purpose of Declaratory relief in this class of case was considered by the Court of Appeal in R –v- PORTSMOUTH HOSPITALS NHS TRUST exp GLASS (1999) 2FLR 905 (CA) and has been helpfully summarised by the Court of Appeal in this case: (2005) EWCA civ 1181. At Paragraph 112 of the judgment of the Court, Wall LJ says this:

In the overwhelming majority of cases in which the inherent jurisdiction of the court over children or incompetent adults is invoked, the "best interests" decision by the court determines the issue once and for all. The extreme example, of course, is the patient in a permanent vegetative state (PVS). A decision that it is lawful to terminate the administration of food and water to a patient in a PVS state, once implemented, is self-evidently determinative. Similarly, a declaration that it is lawful to treat a child in a particular way – for example by being given a blood transfusion or undergoing a particular operation contrary to the wishes of the child's parents – has no ongoing legal, as opposed to medical consequence. In such cases, the declaration binds once and for all. Similar considerations apply to an order that an incompetent adult be sterilized, or that an incompetent female patient should undergo a termination of pregnancy.

12. It is plain that that is no longer this case. It cannot be said that there is a clear medical issue to decide either as to whether to ventilate or, if once started, whether to stop it. All depends on the developing clinical picture. It is not even possible to do, as has been done in this case, to make declarations based on clearly anticipated facts, for that position can no longer be sustained by the medical evidence.
13. There was a suggestion that the court should make a partial Declaration limited to authorising the refusal of ventilation in the event that CW suffered a cardiac arrest. In my judgment there are three compelling objections to that course: first, all the medical evidence concurs in saying that a cardiac arrest is a remote contingency as a primary cause of collapse; secondly, the parents have made it very clear that in those circumstances they would not seek ventilation; and thirdly such a Declaration would be heard by those involved to speak from silence as well as from substance, or in other words it would be understood to required ventilation in all other circumstances save cardiac arrest. Although it would be wrong, I can see only too readily in this case that it would be so misunderstood. In my view the court must focus on the true purpose for which a Declaration is sought in this case.
14. In fact, what the Trust now seeks is something quite new. They seek a Declaration which, (however actually phrased), has the effect in the event of irreconcilable disagreement of giving the doctor the last word. That would, I think, be a novel development. That does not mean to say that it should not be done, but it does mean that the court should scrutinise the application with particular care.
15. The difficulty was succinctly put by Dr 'K'. On the one hand he recognised that the presence of the Declaration impaired his professional relationship with the parents. On the other hand, he said, "I am convinced that the clinicians still need a Declaration………I am fearful that if treatment decisions were restored to the parents they would not be able to accept that we had reached the position where it was not in CW's interest to be ventilated." Later he said, "…...I would not wish to ask any clinician to take a decision not to ventilate CW without the support of a court order…….the history of the case suggests that any clinician who refused to ventilate CW, without a court order authorising such a step, would face condemnation in the media, complaints to the police, a probable report to the General Medical Council and civil litigation."
16. I believe him correctly to have encapsulated the fears of the treating team in relation to this case. It is a very difficult position for them. In order to understand the force of this point, it is important for the court to remind itself of what has happened in this case in the past.

THE CONDUCT OF THE PARENTS

17. I have deliberately said little about this in previous judgments. However, it is now a relevant factor in the question of whether and, if so, what relief should be granted by the court. I recognise the enormous degree of stress that the parents must have been under over these last two years, and that may explain much of what has occurred. Nevertheless what has occurred has had a major impact on everyone else whose duty and wish it has been to care for CW.
18. Before these proceedings began, grave complaints were made to the police about the care (or rather lack of it) that professionals were giving to CW. So far as I am aware no attempt has ever been made to make good those allegations. Indeed even the parents now join fully in the enthusiastic chorus of praise for the exemplary care that CW has received at the hospital. It needs little imagination to appreciate the impact that the making of those complaints would have had on those involved in the stressful care of a dangerously ill baby.
19. During the Autumn last year CW sustained a fracture to a leg. This, as all agree, was wholly accidental and entirely related to her condition. Fractures can be, and usually are, however, very painful. The parents objected to the medical advice to treat the pain with morphine and an out-of-hours emergency telephone application had to be made to me for permission so to treat. Eventually the parents agreed to the treatment, although there were continuing disputes as to dosage, and, as I observed in the April judgement, the child, perhaps co-incidentally, began to make good progress thereafter. Taken on its own, of course, this incident would be viewed as one of those legitimate disagreements between doctor and family that would ordinarily be resolved by discussion. In this case, however, it has to be seen in the context of everything else.
20. So serious did the disagreements between parents and staff become and so voluble the expression of these disagreements, that for significant periods of time the parents were only permitted to visit the ward whilst accompanied by security personnel. Indeed such has been the case even whilst the parents were protesting – quite genuinely, I'm sure – that they had a good relationship with the treating doctor. Now I must in fairness make it clear that I have not investigated in detail why all this has been. The purpose of my recording it is not to attribute blame, but to describe an atmosphere and to allow inferences to be drawn as to the impact of all this on those involved in CW's care.
21. As I recorded in my judgment in April, Mr W interrupted his own counsel's final address to me to accuse the hospital of "all those lies". At no time were any such lies identified; at no time was any evidence of such lies advanced or even referred to; and, in fairness, at no time have the parents ever sought to make good that complaint. The trouble was that everyone heard it, as presumably they were intended to. At that point Mr W left court to speak to the press. What he said, I do not know, though what was reported was very moderately expressed.
22. Dr 'K' pointed out that even though he had developed a good and trusting relationship with the parents, as the parents readily and fully acknowledged, Mrs W still was alleging, just before this hearing, that the hospital had deliberately sedated CW so that she would appear to lesser advantage when examined by the visiting experts. There was, of course, not a word of truth in the allegation and, again in fairness, no-one sought to suggest before me that there was.
23. Mr W gave his evidence, as he usually has, carefully and thoughtfully. His explanation of what might appear to others quite bizarre behaviour was to attribute it entirely to stress as though that provided a complete answer. As I say I do not doubt either that the parents have been under very real and continuous stress, or that stress might excuse much. On the other hand these things have a very real and, it must be said, a very great impact on others. In the context of what I have to decide in this case, it is the impact on others which is of central importance.
24. The plain fact is that this is going to continue to be a stressful case. The medical prognosis is gloomy. A major relapse, with all its attendant consequences is always on the cards. As she grows, her lung disease will make breathing harder rather than easier work. It is far more probable than not, that once again, life and death issues will arise in CW's case. Thus the way that the parents have reacted to stress in the past is the clearest indicator of how they will act in the future. Hence the concern about the impact on others.
25. It follows that any public authority receiving complaints from these parents in the future about CW's medical treatment will want, in the light of what is said in this judgement, to proceed with the greatest caution in deciding whether and how to respond to those complaints. Likewise any person or agency thinking of giving publicity to such complaints will be taken to be doing so with full knowledge of the judgements of the court in this case. That said, of course, this court would not dream of attempting to dictate how or whether any aspect of this case should be reported. Indeed events have shown that the court is entitled to be entirely confident in the degree of responsibility care and moderation which has, so far as I know, universally prevailed in the public discussion of these very difficult issues.
26. I have inevitably had to set out at some length matters which might cause the parents to appear at some disadvantage to themselves. Fairness requires me to say that there is also another side to the picture. Mr and Mrs W have been unswerving in their devotion to CW since she was born. They must have their full share of the credit for the fact that CW has survived and has made the developments that she has. Just as no-one could seriously blame parents who were overwhelmed by CW's condition so no-one could fail to admire the commitment that these parents have given. They are parties to, and probably the main instigator of, plans for CW to come home, and, as I have said, no-one would be more pleased than I were that to happen. The criticisms that inevitably have had to be made of their conduct must always be seen in the context of their single-minded commitment to CW, the inevitable stress occasioned by the care of a very sick child, and their underlying appreciation of and desire to support the exemplary care that this child has received from the hospital staff.

THE POSITION IF NO DECLARATION WERE GRANTED

27. The Trust are therefore understandably very anxious as to what will happen if there is no declaration in place. They do not know how the parents may react. They may, of course, relish having their authority restored to them and exercise it with restraint and responsibility, or they may see it as a victory over the doctors and simply seek to ride roughshod over them. Dr 'K' puts it this way: "…….in the end unless there is a court order, we will have to follow the instruction of the parents, even if we are strongly of the view that this would be against CW's interests." In other words he feared having to ventilate in any of the three sets of circumstances he had described.
28. It is clear that that is how Dr 'K' sees the position and that that is how his predecessors saw it too. It may be how the parents see it. It is certainly the position that some would say it should be. In my judgment, however, it does not represent the law.

THE DUTIES OF THE TREATING CLINICIAN

29. The duty of a clinician is towards the patient. It is to act in the patient's best interests where (as here) the patient is not competent to make her own decisions. As the Court of Appeal have pointed out 'best interests' is not susceptible of further legal definition, but is a concept which has to be worked out in the context of all the facts of the particular case under consideration. The paediatrician has, of course, a particular responsibility to work in partnership with the parents of a child. The problem arises where the clinician's and parents' perception of best interests differ.
30. In my first judgment I offered a tentative analysis of what in those circumstances the position might be. It is apparent that that analysis has proved helpful to others in their thinking about this case. I shall therefore return to it. Put shortly I identified four possible categories of disagreement:

(i) Where a doctor advocated treatment which parents resisted (e.g. a blood transfusion), and a failure to administer such treatment would be an affront to that doctor's conscience;

(ii) Where a doctor advocated treatment which the parents resisted on grounds, that whilst reasonable, were contrary to the clinician's view;

(iii) Where parents wanted treatment, which the clinician could not advise, but the giving of which would not be an affront to conscience; and

(iv) Where the treatment requested would be an affront to conscience.

31. The vast majority of disagreements would fall within categories (ii) and (iii). All the clinicians agreed that in those circumstances they would, in the last resort, accommodate the views of the parents; and that is as it should be.
32. However, it was recognised on all sides that a doctor could not be required to act contrary to his conscience. The Court of Appeal have made it clear that a court should not require any doctor so to act – see: re J. (A Minor) (Child in Care; Medical Treatment (1993) Fam 15, At pp 26H – 27B Lord Donaldson, MR says this:

The fundamental issue in this appeal is whether the court in the exercise of its inherent power to protect the interests of minors would ever require a medical practitioner or health authority acting by a medical practitioner to adopt a course of treatment which in the bona-fide clinical judgment of the practitioner concerned is contra-indicated as not being in the best interests of the patient. I have to say that I cannot at present conceive of any circumstances in which this would be other than an abuse of power as directly or indirectly requiring the practitioner to act contrary to the fundamental duty which he owes to his patient. This, subject to obtaining any necessary consent, is to treat the patient in accordance with his own best clinical judgment, notwithstanding that other practitioners who are not called upon to treat the patient may have formed a quite different judgment or that he court, acting on expert evidence, may disagree with him. Mr Wolfe, on behalf of the parents, accepted that no doctor could be required so to act. It will therefore be readily apparent why it is that Dr 'K's' perceptions of what he would have to do, if there were no court order, does not represent the law.

WHAT DOES AN 'AFFRONT TO CONSCIENCE' MEAN IN PRACTICE?

33. Dr 'K' was clearly troubled by this resort to conscience. He said that it was very difficult ever to be in a position where you would be 100% sure that you were right. Every judge knows just what he means. However, 'conscience' is not so rigid a concept.
34. Of course the essential process is an intellectual one. The doctor must take account of all the circumstances. He must take account of the guidance offered by the Royal College, (already referred to in this case). He must consider whether the treatment requested is futile or the patient's condition hopeless. He must take a second opinion (or more if he thinks it necessary). He must arrive at a conclusion about what is in his patient's best interests. He must ask himself whether there is any reasonable basis for this treatment however much he is personally inclined to advise against it. In that manner he arrives at an intellectual conclusion as to whether the treatment should be given.
35. Conscience (whether one believes it to be God-given or culturally conditioned), is not a wholly rational sense. It is more in the nature of intuition or a hunch as to whether something is right or wrong. In this context it is brought to bear on the intellectual conclusion by confirming it or undermining it. The professional conscience of a doctor will of course have been honed by experience of patients, exposure to the practice of colleagues, and the ethos of his work. But it must be recognised that it has too a truly individual aspect.
36. It seems to me, and I offer this a little tentatively, that a case comes within (iv) above where a clinician concludes that a requested treatment is inimical to the best interests of the patient, and that his professional conscience, intuition or hunch, confirms that view. In those circumstances he may refuse to act and cannot be compelled to do so, though he should not prevent another from so acting, should that clinician feel able so to do.

THE MATTERS TO BE CONSIDERED

37. That seems to me to describe the position in which the Trust and medical team will be in the event that no Declaratory relief is in place. It presents three significant difficulties. First, it is not easily defined whereas a Declaration of the nature sought by the Trust would put the matter beyond question. Secondly it does not offer the clear protection to staff that a Declaration might. Thirdly, it does not remove the prospect of litigation for, especially in the event of gradual as against catastrophic decline, the Trust might feel obligated to return to Court Against this, however, must be set the fact that even with a Declaration, such as is sought by the Trust, it would not be possible to prevent the parents referring any dispute back to the Court. It may (and I stress may) have a countervailing advantage, namely to give these parents an opportunity to prove their assertions about trust in and co-operation with the treating team.
38. Having looked at what I think to be the novel character of the Declaration now sought, and having considered the position as I find it would be, were no Declaration in place, I must return to the question as to whether any Declaration should be granted. The parents contended that there should be none, though were prepared to accept one limited to a cardiac arrest. For the reasons given in paragraph 13 above, I have rejected that approach. The Guardian did not feel able to support the continuation of the Declarations because the medical evidence could not prescribe in advance the circumstances in which ventilation should be attempted or refused and was strongly opposed to any time limits on any attempted ventilation. The Trust were in the end less concerned about whether or not a Declaration was granted then they were about leaving the treating team in doubt and uncertainty about their position.
39. I must of course keep in mind the proper and improper uses to which the Declaration can be put in this area of law, as the Court of Appeal have reminded us in their judgment in this case. A Declaration is intended to resolve a dispute and usually to provide, once and for all, the course of treatment to be pursued. Exceptionally, (and they held that this case fell into that category), a Declaration could be used to resolve a future dispute, which could both be clearly identified and reasonably anticipated. What a Declaration cannot be used for is to require the court, in effect, to oversee the treatment plan and its execution. All that said, one has to recognise the (happily) wholly exceptional circumstances of this case, and the peculiar difficulties that beset the treating team and are likely to continue to trouble them for as long as they have the care of CW. It is not right that society should impose duties on it members, and then withhold the means by which in any individual case those duties are to be carried out.

CONCLUSION

40. Since it is not possible to frame a conventional Declaration to deal with the problems in this case, given the unanimous medical evidence both on the issue of whether to ventilate, and also on when to withdraw ventilation, clearly the Court can only grant a Declaration, were it to do so, in a wholly novel form whereby it commits a treatment veto to the treating clinician. Whilst I am not saying that it might never be right to grant such an order, the court should hesitate long before so doing.
41. I have tried to set out, in a way comprehensible to all, what I understand to be both the duties and also the limits on the duties of the treating clinician. He does not take orders from the family any more than he gives them. He acts in what he sees as the best interests of the child: no more and no less. In so doing, however, parental wishes should be accommodated as far as professional judgment and conscience will permit, but no further. It is vital that that is understood by all. As I have indicated, a dispute that encroaches on conscience will be rare indeed, but I can see that it could happen here.
42. Having set out my views and having recognised (perhaps to my regret) that I simply cannot preclude future litigation, I have come to the view that at least at present no further Declaratory relief is required. I hope that the trust and confidence of which both Dr 'K' and the parents spoke can now develop with a view to securing the best for CW (whether in life or death). It is said that cases like this have no winners, but here there is a chance that CW may be the winner if her parents seize this opportunity constructively to build upon their trust and confidence in Dr 'K' and the staff who have committed themselves in such exemplary fashion to her case.