England and Wales High Court (Family Division) Decisions

IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION

		Royal Courts of Justice Strand, London, WC2A 2LL
		21st April 2005

Mr Justice Hedley :

1. In opening this case on behalf of the parents, Mr David Wolfe threw down the challenge that a society is measured by the way it treats its most disabled members. The law's answer in relation to those who lack capacity to decide for themselves is that they are treated in accordance with their best interests, those being usually established by agreement between those who have the responsibility for that person's care or where, as here, no such agreement can be found, by decision of the court.
2. This case has been before the courts before; indeed it is the third judgment that I have given. Fully to understand the case, it is essential to read this judgment with the one given by me on 7^th October 2004. Nevertheless, although this is in form an application to discharge the Declarations that I then made, it is accepted by all parties both that it is for Portsmouth to show that the Declarations should continue and that there is no presumption, legal or evidential, that they should do so.
3. I am delighted to be able to say that Charlotte has survived the winter. No professional was confident that she would do so and most thought it highly likely that she would not. All, however, were sufficiently wise and experienced to know that in dealing with a child you can rarely be certain. Children do not stand still; they develop or they regress. It is right then that I should describe Charlotte's condition now before comparing it with what I found last October.
4. There is little dispute on the evidence that I have heard about her present condition. She suffers from chronic respiratory disease which means that she is dependent on oxygen which has to be delivered in a head box. She is able to leave the box for comparatively short periods but, when she does so, she requires an oxygen mask. Her requirement of about 50% oxygen is too great for any lesser form of conveying oxygen like nasal cannulars. It is this condition that prevents her going home and explains why she has never left hospital (save to transfer to another) in the 18 months of her life. No one has said that she will never be able to go home but that will not be possible until her oxygen requirements have reduced to at least 30%. She does not usually require sedation and she is able to make some response to human stimulation and contact. She is able to respond to a loud noise and her eyes will track the movement of a prominent object like a colourful toy as is apparent from the video. Some say that they have seen her smile nor do I doubt that. The Circle multi-disciplinary neurological team believe that further development can be achieved.
5. All that is in positive contrast to the position as it was in October 2004 when her oxygen requirements approached 100%, she was almost wholly unresponsive, she was in deep discomfort requiring almost continuous sedation and her condition could properly have been described as intolerable. Such a term could not be applied to her day to day life now. A key question of course is the cause of this improvement. The main answer, as all the expert evidence made clear, is the very high quality of care that she has received at Portsmouth coupled with the continuing commitment of her parents. Interestingly, Dr H, her responsible consultant paediatrician, dated her improvement from the time when she was first treated with morphine though no one claimed to be able fully to explain that.
6. That, however, is only part of the picture. As I have said she still suffers from a severe chronic respiratory disease which is still expected to be fatal. Nothing has changed in that underlying condition even though its consequences have substantially ameliorated. It is to be noted that no case can now be made for a tracheostomy as her breathing is managed without undue difficulty (provided there is adequate oxygen) and I agree with those experts who also say that a CPAP trial should not be made as it too is unnecessary. However, CPAP is not ruled out should it become necessary in the future. Moreover, as in my view Dr C convincingly demonstrated, her neurological condition remains about as bad as it could be. There has been no head growth and her head is so small that it falls below the 0.4 centile; indeed it is the head of a newly born baby in size. Accordingly there has been no brain growth. Nor is it remotely likely there will be any in the future. Whilst I accept the Circle view that more could be done in the future with what she has, what she has will not develop as indeed Dr J recognised. A further feature is that Charlotte is seriously under-nourished. This, of course, is nothing to do with her care for she is fed almost continuously through a tube. It is because, given her low tolerance of food before she vomits, she simply cannot take in enough calories to replace what she uses. The problem seems to stem from the vigorous limb movements that she makes and I accept as the most likely explanation that these movements are involuntary and are associated with her gross brain damage. It is made worse by her intolerance of cow's milk for all high energy baby foods are based in cow's milk. She has gained no weight since October and so she is slipping further and further behind where normal development would have led. No end can be seen to this though some doctors suggested trying to move the tube further down the stomach to the jejunum, though there were real doubts about whether this would work. It is very likely that she will experience the discomforts of malnourishment. I should also note Dr I's view that she experiences 'suffocation' feelings daily as part of her oxygen dependence and lung disease.
7. Whilst there have been very welcome developments, her condition essentially remains grave, indeed as Dr H put it she remains a terminally ill child. Dr H observed that it was very unusual to see this extent of lung damage at this age and no one dissented from this view nor from Dr C's prognosis in terms of neurological damage nor from the problems of malnourishment. It is important then to identify the areas of agreement and disagreement in the evidence.
8. All agree that her day to day life is not intolerable and that every effort should be made to enable her to develop such potential as she has to its fullest extent. All also agree that every reasonable step short of major invasive treatment should be employed as necessary to sustain this life. Indeed if some casual accident occurred, like an object accidentally lodging in an airway, some invasive treatment would be justified to deal with it. Innoculations should be considered and given when thought necessary. On that all the evidence agrees and so do I.
9. The area of dispute is in fact quite narrow but it is fundamental. It can be illustrated by comparing the views of Dr A and Dr G both very experienced in paediatric intensive care. Dr A begins by recognising that is a remarkable achievement that Charlotte has survived the winter; it was flat contrary to his expectation. That said, however, he thought it "virtually inevitable" that there would be some respiratory crisis which would be more than she could cope with particularly if it were a primary infection. He points to her severe chronic lung disease and that her defences will be further weakened by her malnutrition. His view is that she would not survive such an event whatever aggressive invasive treatment was tried. Even were she to do so, he regarded a return to her present state as so unlikely that such intervention simply would not be justified. In so saying, of course, he had in mind the dramatic deterioration and permanent brain damage incurred after the last intensive care intervention in July of last year.
10. Dr G began by rightly drawing attention to the improvement in Charlotte's condition. In his view she was following a pattern of improvement seen in such children "so long as she does not succumb". He accepted the real risk of infection and the grave consequences that could befall this child. More overtly in his oral evidence, as opposed to his written evidence, he said that if she did succumb to infection then ventilation would be justified. It was his view that provided in due course she could be got off the ventilator it was more than likely that she would return to her baseline condition. He clearly placed weight on the fact the parents want everything done. That said he would continue to counsel care short of ventilation and further recognised that if she did not respond quickly to ventilation her resultant quality of life would be 'awful'. Moreover, he recognised that if irreversible damage had been done (as with for example a RVS infection) it would not be right even to attempt ventilation. His view was that ventilation being a reversible procedure should be tried if one could not be sure that terminal damage had already occurred if that is what the parents want.
11. Dr H identified here a clash of philosophy between those who believe that if a treatment is available it should be used and those who believe (whatever others may want) that a treatment should only be used if it will achieve something. She was firmly of the view that in the event of overwhelming infection ventilation would not only achieve nothing, it would imperil a peaceful death. Dr F was clearly of the view that all treatment up to but not including ventilation would be appropriate. Dr I said he would regard transfer to an intensive care unit as 'oppressive' to Charlotte because to do so would in his view serve no purpose. He added that whilst he might be sympathetic in principle to 'short term' ventilation he believed it impossible to deliver in practice. The neurologists Dr J and Dr C were not asked to express specific views on intensive care.
12. A further clash of philosophy was identified in the evidence of Ms K and it is an issue that has troubled me throughout this case. She said in her evidence, and she re-iterated it in a subsequent letter to me, that the role of the parents cannot be disentangled from issues of treatment and it simply is neither right nor practicable to give or withhold treatment against the wishes of the parents. I do not doubt that many will have sympathy with that view. It is not, however, the law. The best interests decision and thus its consequences in terms of treatment is committed to the judge where parents and professionals cannot agree. That means there must always be a real possibility of an outcome at variance with parental wishes. Of course, as I emphasised at paragraphs 32 to 34 in my earlier judgment, the views of the parents must be accorded profound respect and given weight but they cannot be decisive.
13. In my judgment there are two questions in this case that have to be answered in the light of the best interests test. First, in the event of an overwhelming respiratory infection, whether it would be right to attempt or refrain from aggressive intervention by way of intubation, transfer to a tertiary centre and ventilation. Secondly, if the indications are that such treatment should be withheld, should that decision be made now or should it await the crisis and then be resolved in the light of that. I recognise specifically the overwhelming probability that in the event of such a crisis the parents would want intensive intervention and Portsmouth would decline it.
14. The law relating to best interests is considered in paragraphs 20 to 26 of my earlier judgment and I do not propose to repeat it. Indeed my approach to best interests has subsequently been affirmed in the judgment of Dame Elizabeth Butler Sloss in Re L (a child) [2004] EWHC 2713 (Fam). Moreover, I propose to continue to adopt the approach to the ascertainment of Charlotte's best interests as set out in paragraphs 27 and 28 of my earlier judgment.
15. I turn then to the question of whether or not it would be in Charlotte's best interests in the event of respiratory collapse to attempt aggressive invasive treatment. That is what the parents want and in that they are supported by Dr G at least to the extent of starting such treatment. No one else who feels qualified to do so shares that view. All agree that all treatment should be offered up to but not including invasive intensive care. All agree that Charlotte's present life should be nurtured, developed and protected up to that point. There are three reasons why they will not go the last step. The first is the doubt that she could survive even with full ICU treatment. The second is that even if she did, it would result in a significant deterioration in her condition. Whilst no one could say that if she survived ICU treatment she could never regain what she has now few think she would in fact do so and she would be left in a position similar to that of last October. The third is that the whole experience of ICU treatment would imperil a peaceful death.
16. After careful and anxious consideration, I find myself convinced by the majority medical opinion. It is essential in this regard to bear in mind the severity of her chronic respiratory illness, the inherent likelihood of infection and her reduced resistance caused by her malnourishment. I think it unlikely that she would survive a crisis irrespective of full ICU treatment but that, even if she did, it would be at the cost of significant deterioration in her condition to the point where life would again be intolerable on a day to day basis. Of course, I could not rule out an ultimate return to her present state but that would not only be the best that could be hoped for but also improbable. And I am quite clear that it would not be in Charlotte's best interests to die in the course of futile aggressive treatment. Dr H and Dr A came close to saying that such treatment would be inconsistent with professional conscience. Others, like Dr F and Dr I, did not go that far but expressed firm views that such treatment would not accord with her best interests. In the event of respiratory collapse, in my judgment all treatment up to but not including intubation and ventilation would be in Charlotte's best interests but nothing further. That is the view reluctantly but clearly taken by the Guardian on consideration of all the evidence.
17. That leads me to the second question: should a decision be taken now or should it await the onset of a crisis and be resolved in the light of the circumstances of that crisis? Mr Wolfe submits strongly that no decision should be made now for to do so would effectively exclude the parents from the decision making at the onset of crisis. I acknowledge that that is a powerful point. However, it would be right first to set out the matters that in my view ought to be taken into account in resolving this question.
18. I am satisfied on the evidence that it is overwhelmingly probable that such a crisis will arise and highly likely that the cause of it will be a respiratory infection. Further (as I have already indicated) it is highly likely that the parents would want intensive care and that Portsmouth would not. It follows that it would be highly likely that court intervention would be required. Should intensive care be necessary, the child will have to be intubated and then an intensive care unit sought in a tertiary hospital as such facilities are not available in Portsmouth. The nearest hospital with such facilities is in Southampton who, if a bed were available and the Portsmouth staff asked them to do so, would accept her. If no such bed were available, then there would have to be a countrywide search both for a bed and an ICU willing to accept her. That is an issue, for Dr A made it clear that his unit would be unlikely to do so. Once found, the child would have to be transferred to that unit. Once a decision is made to intubate and ventilate then the child, who is of course sedated, becomes more an object to whom things are done, than a child, as the paediatricians pointed out. No one would ever willingly put a child through that if no purpose was to be served and it is easy to see that it is inconsistent with a peaceful death. Furthermore relations between the parents and the hospital are very fragile. When Mr Wyatt attends he is accompanied at all times by a member of the security staff. I have not formally or publicly investigated why this is so but it does not betoken harmonious relationships. During Mr Wolfe's closing speech, Mr Wyatt left court very conspicuously loudly denouncing the hospital for 'telling lies' though I know not what they are. The staff are clearly very stressed both by the enormity of Charlotte's plight and the volatility (as they see it) of the parents. Positions have inevitably hardened on both sides. Against that has to be placed a mutual respect for the day to day care offered to this child and for the commitment of the parents to her. Moreover the parents seem to have forged a positive relationship with Dr H. From all that, it is clear that a medical crisis could indeed be a difficult time.
19. It was against this background that Dr H was strongly of the view that a decision should be made now. That was a view actively propounded by Dr A. It received its strongest expression in the evidence of Dr I who thought there was really no choice but to decide now. 'You cannot walk away from a decision' was how he finally put it. It followed inevitably from his evidence that Dr G did not support the taking of a decision now.
20. I have considered with care the judgment of Lord Woolf MR (as he then was) in R –v- Portsmouth Hospitals NHS Trust ex p. Glass [1999] 2FLR 905 (CA). It is clear from that case that the general rule is that Declarations should be sought and considered in the light of circumstances as they are and not as they may be. Any departure from that approach would have to be justified. I also bear in mind the judgment of the European Court of Human Rights in Glass –v- UK [2004] 1FLR 1019 where the point was made that a hospital should come to the court in good time and not wait to be overwhelmed in a crisis. Clearly a balance has to be struck between preserving autonomy and parental decision making in the light of developing circumstances on the one hand and the need to avoid being overwhelmed in a crisis on the other.
21. I have come to the conclusion in this case that a decision should be made now. I have done so for two broad reasons. First, I am dealing with a fairly precisely anticipated medical emergency, namely a major respiratory crisis, which is highly likely to come about as a result of infection; it is unlikely that such a crisis will be other than has been described in the evidence. Secondly, I rely on the drawing together of all those matters set out in paragraph 18 above. Whilst I deeply regret what the parents may reasonably see as their exclusion from the decision making process as to intensive care in the event of a crisis, I am entirely satisfied that it would be wholly contrary to Charlotte's best interests for that crisis to be overshadowed by a major legal conflict which is highly unlikely to raise any issue that has not already been canvassed before me.
22. That, however, is subject to two qualifications. The first is that the judgment whether to rely upon the Declarations must be taken by Portsmouth in the light of all the circumstances pertaining at the time of crisis on the basis of Charlotte's best interests and in close consultation with the parents. The second is that everyone agreed that if the Declarations were continued it should not be on an open-ended basis but should be subject to review. I agree. I will hear counsel on when that should be and whether it should be triggered by the parties or the court. Moreover, I will hear counsel on the form of order.
23. I have one other thing to say. This case has for reasons earlier explained been heard throughout in public. I recognise that it is the family and the medical and nursing staff who have borne the brunt of that publicity. Whilst the reporting of the case and comments on it have, so far as I can see, been uniformly fair and balanced, some other publicity has been found hurtful and has added to the stress borne by individuals linked to Charlotte. It is of course essential that the public should understand the workings of this jurisdiction and that there should be full and open debate about it. I only wanted to say that I recognise and acknowledge that that has come at a price to those most closely involved in Charlotte's care which, as all the expert evidence has asserted, has been uniformly of the highest standard.