Wyatt & Anor v Portsmouth Hospital NHS & Anor

This appeal concerns Charlotte Wyatt (Charlotte) who was born on 21 October 2003. The appellants are her parents, Darren and Deborah Wyatt. The first respondent to the appeal is the Portsmouth Hospitals NHS Trust (the Trust). The second respondent is Charlotte herself, represented in the proceedings by her guardian, Teresa Julian, an officer of CAFCASS Legal Services.

Charlotte was born prematurely at 26 weeks gestation and weighing only 458 grammes. She has suffered a long and complex medical history since her birth. An indication of the seriousness of her condition is the fact that she has never left hospital. Apart from one period when in July 2004 when she was acutely ill and was transferred to the intensive care unit at Southampton Hospital, she has throughout her life been cared for in the paediatric unit of a hospital operated by the Trust.

As a small child, Charlotte self-evidently lacks the capacity to make decisions about her medical treatment. In these circumstances, such decisions are, in the first instance, taken by those having parental responsibility for her (her parents) in consultation with, and on the advice of, the doctors treating her. In the event of an important disagreement between doctors and a child’s parents, however, either side can invoke the inherent jurisdiction of the Family Division of the High Court relating to children, and a judge of the Division will decide what course of treatment is in the best interests of the child.

That is what has happened here. Unfortunately, there has been a series of disagreements relating to Charlotte’s treatment between Mr and Mrs. Wyatt and the doctors looking after her. The fundamental nature of those disagreements and their critical importance for Charlotte led the Trust, on the doctors’ behalf, to invoke the High Court court’s inherent jurisdiction over children. The consequence was that on 8 October 2004 Hedley J, exercising that jurisdiction, made a number of declarations about what was and what was not in Charlotte’s best interests.

We set out the declarations made by the judge in full in paragraph 19 below. In essence, however, the declarations authorised the responsible paediatric medical consultants not to ventilate Charlotte in the event that she suffered an infection which had led or might lead to a collapsed lung, and which proved resistant to anti-biotics. Those declarations were not limited in time, and accordingly governed Charlotte’s treatment for the indefinite future. As at 8 October 2004, the prognosis for Charlotte was gloomy in the extreme, and she was not expected to survive the forthcoming winter.

On 21 April 2005, after a further hearing in which Hedley J again heard detailed medical evidence about Charlotte’s condition, he refused Mr. and Mrs. Wyatt’s application to discharge the declarations. However, he directed that the case should be listed for a review in October 2005 (with a time estimate of half an hour) to consider whether the declarations should be further continued. He refused Mr and Mrs Wyatt permission to appeal against the substance of the declarations, but gave permission to appeal: -

“…on the issue as to whether the court should have continued the declarations ….. or whether (the Trust) and / or the court should have waited until making a decision on the matter until there was an immediate medical necessity for the said declarations (sic).”

In this court, Mr and Mrs Wyatt renewed their application for permission to appeal against the substance of the declarations. Their counsel, Mr. David Wolfe, described the question raised by the renewed application for permission to appeal as the “best interests” question, He described the question raised by the substantive appeal as the “timing” question. We will adopt the same language in this judgment.

We heard argument for a full day on 25 August 2005. At its conclusion we announced our decision. This was: (1) that permission to appeal on the best interests question would be refused; (2) that the appeal on the timing question would be dismissed; but that (3) the review of the continuation of the declarations directed by Hedley J should, if possible, be accelerated. To the latter end, we ordered that, in the absence of Hedley J, there should be a directions appointment before a different judge of the Family Division in September 2005. We reserved the reasons for our decision, which we now give.

We think it very important that at the outset of this judgment, we should make clear both what the case is about, and what it is not about. The case is not, and never has been about the withdrawal of treatment from Charlotte in order to allow her to die. It is not about whether or not Charlotte should be subject to a “do not resuscitate” (DNR) policy. Nor is it about the level of care provided for her. Charlotte has been profoundly disabled from birth, but she has been kept alive by the devoted care and treatment she has received from the Trust’s nursing and medical staff. Without that care and treatment she would undoubtedly now be dead.

During the course of the hearing, we were pleased that Mr. and Mrs Wyatt, through their counsel, were able to give a public and unequivocal acknowledgement of the outstanding care Charlotte has received. That acknowledgement was, in the court’s judgment, well made.

What the case is about is what should happen if Charlotte contracts an infection or suffers some other crisis which is likely to lead to her death, but which cannot be treated by drugs and thus requires her to be ventilated if she is to stand any chance of remaining alive.

Amongst her other disabilities, Charlotte suffers from chronic lung disease of prematurity. As described by the consultant paediatrician in charge of Charlotte’s care in September 2004, her lungs are severely damaged because she was born prematurely, and in order for her to survive, she had to be placed in an incubator and ventilated immediately after her birth. This required pressurised gas to be blown into the lungs. That, in turn, caused damage to her lung tissue, resulting in scarring. The scarring reduced the ability of the lungs to exchange oxygen and carbon dioxide. The more premature the baby, the longer the period of ventilation required, and the more likely that such a baby will have chronic lung disease.

The medical opinion which Hedley J accepted in October 2004 and April 2005 was that it was not in Charlotte’s interests to be ventilated in the circumstances described in paragraph 11 above. The reasons for this view, in essence, were; (1) that the doctors thought the process of ventilation might itself kill Charlotte, and so deprive her of a peaceful death in the arms of her parents; and (2) that even if she survived ventilation (a) the process itself would be painful for her and (b) it would not result in any improvement in her underlying condition. Indeed, it might make it worse. Ventilation, therefore, at best would cause Charlotte additional pain and suffering, and would serve no purpose.

We are entirely satisfied from the documents and from the submissions made to us that the Trust (acting, as it does, on behalf of the doctors and nurses who have devoted so much of their time and expertise to keeping Charlotte alive) did not invoke the court’s jurisdiction lightly, but did so because it thought it contrary to Charlotte’s best interests to subject her to what it believed (and continues to believe) would be increased suffering for no commensurate benefit.

When the case came back before the judge in March 2005, Mr and Mrs Wyatt’s case was that Charlotte in the past few months had not only confounded the doctors by surviving, but that there were some improvements in her condition, notably a reduction in her reliance on an artificial supply of oxygen. They argued, accordingly, that since Charlotte’s life was not currently intolerable, ventilation which saved her life and could maintain her current state was in her best interests. The doctors did not agree.

In his April 2005 judgment, Hedley J found that there had been no change in Charlotte’s underlying condition, and that she remained a profoundly disabled baby. In particular, her brain had not grown to any significant extent. After a careful examination of all the arguments for and against ventilation, he decided for the second time that ventilation was not in Charlotte’s best interests, and he continued the declarations. The question for us is whether or not he was right to do so.

For reasons which will become apparent, the history of the proceedings is relevant to the timing question, and the case is, furthermore, unusual in that it has been necessary for Hedley J to make a number of different orders relating to Charlotte’s treatment.

Proceedings were formally instituted by the Trust on 6 September 2004. On 13 September 2004, Hedley J granted anonymity for all the expert witnesses in the case, and on 16 September 2004, he made an order forbidding the identification of experts in the media. The terms of that order were subsequently extended to cover all the fresh experts and clinicians who have given evidence in the proceedings.

The order which lies at the heart of the case is that made by the judge on 8 October 2004. That order contains the following declarations in relation to Charlotte:

On Monday 30 November 2004, Charlotte was found to have a fractured femur. This had nothing to do with abuse or mishandling: it was due to her intensively brittle bones. Mr. and Mrs. Wyatt refused to permit the Trust to administer diamorphine to Charlotte, fearing that it would affect her breathing. The doctors treating Charlotte made an out of hours application that day by telephone to the judge, seeking an extension of the October order to permit diamorphine to be administered. That order was granted, although we were told that thereafter, Mr. and Mrs. Wyatt’s opposition relented and morphine was administered with their consent.

Most unfortunately, there were several further occasions on which the clinicians and the parents disagreed, and we were told by Mr. Lock, that in the autumn of 2004 Mr. and Mrs. Wyatt reported the doctors treating Charlotte to the Hampshire Police for serious claimed offences related to the care provided to her. That led to a police inquiry. Relations were further strained when Mr. Wyatt sought to intervene in routine decisions about drug levels to be administered. This culminated in the Trust making a further application to the court on 15 December 2004 to extend the ambit of the discretion held by the Trust’s clinicians to decide the treatment to be administered to Charlotte.

It was against that background that on 17 December 2004, Hedley J made three further declarations. These were: -

The declarations made on 17 December 2004, which remain in force and are not the subject of any appeal, formed part of an order designed to achieve an agreed treatment plan for Charlotte, with the fall back of a review by the judge on 28 January 2005. In the event, the hearing on that day resulted in the judge authorising the instruction of further experts in order to ascertain whether or not there had been any changes in Charlotte’s underlying condition, and setting up the hearing which concluded with the judgment under appeal handed down on 21 April 2005.

As part of his order on 28 January 2005, the judge refused an application by Mr and Mrs Wyatt to stay the declarations he had made on 8 October 2004. Mr. and Mrs Wyatt sought the permission of this court to appeal against that part of Hedley J’s order, and at on oral hearing on 9 February 2005, this court (Thorpe, Potter and Wall LJJ: unreported [2005] EWCA Civ 185) refused permission to appeal.

The hearing which resulted in the order under appeal took place over two days (14 and 15 March 2005). The judge heard further expert evidence and reserved judgment, which he handed down on 21 April 2005. In order to understand the judge’s reasoning in April 2005, however, it is necessary to examine the judgment which he gave on 7 October 2004, and it is this to which we now turn.

In the opening three paragraphs of his judgment handed down on 7 October 2004, the judge identified the issues he had to decide in the following terms: -

“1.

On the basis of the unanimous medical evidence in this case, the issue in all probability is not whether this baby should live or die but how and when she should die.  Charlotte has chronic respiratory and kidney problems coupled with the most profound brain damage that has left her blind, deaf and incapable of voluntary movement or response.  It is very highly probable that she will during this winter succumb to a respiratory infection that will prove fatal.  That said the unanimous medical evidence also recognises that in this area there is no such thing as certainty of prognosis of survival.

2. The fundamental damage to her respiratory system and kidney function is highly probably irreparable.  The permanent damage to the brain is certain and irreversible.  According to the medical evidence, Charlotte demonstrably experiences pain; whether she can experience pleasure, no doctor knows though most doubt it.  She can be maintained in her present condition and everyone agrees that she should be.

3.

The difference comes were she to deteriorate to the state that she would require artificial ventilation as everyone recognises that she almost certainly will.  The unanimous medical advice is that to give such treatment would not be in her best interests.  The views of the parents are that such treatment should at least be instituted and that could best be prepared for by the carrying out of an elective tracheotomy, that is to say the creation of an airway through the neck into the lungs.”

In what Mr and Mrs. Wyatt acknowledge was, at the time, an accurate summary, the judge then described Charlotte’s condition. He said: -

The judge fairly summarised the position of Mr and Mrs Wyatt in paragraphs 12 to 14 of his judgment, in which he said: -

“12.

The parents do not seriously question the medical description of Charlotte or its long term implications.  Indeed I believe that they recognise the profoundly pessimistic medical prognosis and that that has a proper medical basis to it.  Nevertheless they have not abandoned hope.  They believe that they have some experience of Charlotte reacting to them and, although they recognise that there has been a recent serious deterioration in her condition, they believe that she still does so.  They believe it is their duty to maintain life as they do not believe that she is yet ready to die.

13.

In the course of his evidence to me Mr Wyatt, although accepting that his broad approach was 'life at all cost', did accept that there had to be limits.  By that I think he meant that they would know when Charlotte was ready to die and would then allow her to do so.  In fact he went further than that (and further than either of them had previously indicated) and said they would agree to a treatment plan and that, if after a few days of intensive ventilation no progress had been made, would contemplate agreement to its withdrawal.  However, he made it clear that he would want to make that decision at the time and not irrevocably commit himself in advance.  That is a view which it is not at all difficult to understand.

14.

The parents had also spoken of hoping for a miracle.  By that they meant not only the theoretical chance acknowledged by the doctors but also a miracle born of divine intervention.  However, Mr Wyatt agreed with me that that would be wholly unaffected by any order that I might make.”

After a careful analysis of the law which he had to apply (to which we will, of course, return) the judge was not satisfied that further aggressive treatment, even if necessary to prolong Charlotte’s life, was in her best interests. He expressed his conclusion in the following two paragraphs of his judgment: -

“38.

I have given this case my most anxious and closest attention.  I am only too aware of my own limitations in making so momentous a decision.  Yet in the end I have come to a clear view.  Subject to two observations that I wish to make at the end of this judgment, I do not believe that any further aggressive treatment, even if necessary to prolong life, is in her best interests.  I know that that may mean that she may die earlier than otherwise she might have done but in my judgment the moment of her death will only be slightly advanced.  I have asked myself:  what can now be done to benefit Charlotte?  I can only offer three answers: first, that she can be given as much comfort and as little pain as possible; secondly, that she can be given as much time as possible to spend physically in the presence of and in contact with her parents; thirdly, that she can meet her end whenever that may be in what Mr Wyatt called the TLC of those who love her most.  Although I believe and find that further invasive and aggressive treatment would be intolerable to Charlotte, I prefer to determine her best interests on the basis of finding what is the best that can be done for her.

39.

In reaching that view I have of course been informed by the medical evidence as to the prospects and cost to her of aggressive treatment.  I hope, however, that I have looked much wider than that and seen not just a physical being but a body, mind and spirit expressed in a human personality of unique worth who is profoundly precious to her parents.  It is for that personality of unique worth that I have striven to discern her best interests.  It is my one regret that my search has led to a different answer than that sought by these parents.”

We have already commented that Mr and Mrs Wyatt did not apply for permission to appeal the order made by the judge on 8 October 2004, and in his submissions to us, Mr. Wolfe acknowledged that on the medical evidence as it stood at that date, an appeal would have been difficult to mount.

Mr. and Mrs. Wyatt’s case, however, is that by the time the question of continuation of the declarations fell to be considered by Hedley J in March and April 2005, the position had radically shifted. The court, they argued, was no longer concerned with a terminally ill child. Charlotte had defied the doctors. Not only was she still alive, but there were some visible signs of improvement.

In his judgment handed down on 21 April 2005, the judge recognised that Charlotte’s condition had improved in a number of respects, and in doing so, he paid a proper tribute both to the devoted care of her parents, and the very high quality of care she had received from the Trust’s employees. However, having expressed his pleasure in the fact that Charlotte had, contrary to expectations, survived the winter, the judge continued: -

“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 tracheotomy 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 on 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.  Inoculations should be considered and given when thought necessary.  On that all the evidence agrees and so do I.”

The judge, accordingly, had to weigh the medical evidence and set it against Mr and Mrs Wyatt’s wishes. He described the area of dispute between the doctors as narrow but fundamental. The majority view was expressed by Dr. A, whose opinion the judge recorded in the following terms: -

Only one of the number of eminent specialists advising the judge, Dr. G took a different view. The judge recorded his opinion in the following paragraph: -

The judge summarised the views of the remaining doctors (all of whom agreed with Dr A) in the following paragraph from his judgment: -

Having reminded himself that the wishes of Mr. and Mrs Wyatt could not be decisive, although they had to be accorded profound respect and weight, the judge aptly identified the two issues which he had to decide: -

The judge answered the first question in paragraphs 15 and 16 of the judgment, in which he said:

“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.”

The judge then turned to the second question. Having recorded the arguments addressed to him, and considered the decisions of this court and the ECtHR respectively in R v Portsmouth Hospital NHS Trust ex pate Glass [1999] 2 FLR 905 (hereinafter referred to as Glass I) and Glass v UK [2004] 1 FLR 1019 (hereinafter Glass II) he said: -

“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.”

We heard able submissions from Mr. Wolfe, from Mr. Lock and from Mr. Huw Lloyd on behalf of Charlotte’s guardian, who adopted a skeleton argument prepared by Mr. Robin Barda of counsel. Before addressing the arguments, however, we need to make two points, both of which impinged on our decision to attempt to expedite the review due to be heard by the judge in October 2005.

The first point is that the hearing of Mr and Mrs Wyatt’s appeal had, unfortunately, been substantially delayed. The reason for this was that at the date of their appellants’ notice (28 April 2005) there was pending in this court an appeal by the General Medical Council (GMC) against the decision of Munby J in the case of R (Burke) v GMC [2004] EWHC 1879 (Admin) in which Mr. Wolfe appeared as counsel for the Disability Rights Commission (DRC), one of the interveners. In the course of his wide-ranging judgment, Munby J had accepted a submission made by Mr Wolfe in relation to the formulation of the “best interests” test on which Mr and Mrs Wyatt wished to rely, but which it was thought this court was likely to review.

The appeal in R (Burke) v GMC was fixed for 16-17 May 2005, and accordingly on 29 April 2005, Wall LJ directed on the papers that both the permission application and the appeal in Charlotte’s case should be heard on 23 June 2005. Unfortunately, the reserved judgment of this court in R (Burke) v GMC was not available by that date, and the hearing date for Mr and Mrs Wyatt’s appeal had to be vacated. A similar fate befell a further hearing fixed for the week commencing 25 July 2005. In the event, this court’s judgment in R (Burke) v GMC [2005] EWCA 1003 was not handed down until 28 July 2005, with the consequence that Mr. and Mrs. Wyatt’s appeal had to be heard in the long vacation.

The result, of course, is that when Mr and Mrs Wyatt’s appeal was heard in this court on 25 August, more than five months had elapsed since Hedley J heard the evidence in the case, and more than four months since he had given judgment. There is a clear explanation for the delay, but it is, nonetheless, regrettable.

The second point arises from the first. None of the parties before us sought permission to adduce fresh evidence. However, in a case involving a child, and one in which a critical plank of Mr and Mrs Wyatt’s case is what they perceive to be a continuing improvement in Charlotte’s condition, it was inevitable that we should both seek and receive up to date information about her. Thus we were shown and read a letter dated 11 August 2005 from the doctor in charge of Charlotte’s treatment to Mr. and Mrs. Wyatt which explained the Trust’s position in clear and simple terms, and which made it clear that the existence of the order did not mean that the Trust would never resuscitate Charlotte under any circumstances. The letter stated that:

“…. if something happened where we thought there was any reasonable chance that Charlotte could make a good recovery, we would urgently consider referring her to intensive care. I assure you that we would seek both your views before taking a decision.

The letter went on to praise the commitment of the staff caring for Charlotte, all of whom had been “encouraged by her remarkable progress to date, albeit that we all know that there has been no change in her underlying condition”. The letter also made clear that it had been possible to take Charlotte out of the ward and into the open air.

Mr. Wolfe also produced a letter dated 23 August 2005 from an organization called Portsmouth Portage Service, a home visiting educational service for pre-school children run by the Portsmouth City Council, attached to which was a document entitled “Initial Long Term Goals” which, amongst “current status of skills”, recorded Charlotte as enjoying her bath; moving her head to both sides when lying on her back; appearing to listen and respond to speech by looking at the speaker’s face; smiling or turning her head and demonstrating some vision by blinking when a hand was passed over her eyes; looking at a dangling toy held above her head; following an object in a horizontal pattern with her eyes and looking “at surroundings (20 cms) when lying on back”.

We also had a report from Charlotte’s Guardian dated 12 August 2005. This made a number of points, which we will summarise as follows, avoiding duplication with the Portage Service report wherever possible:

For the Trust, we were shown an updated summary of Charlotte’s condition which, in broad terms, confirmed the information provided by Mr and Mrs Wyatt and the Guardian. Her growth was attributed to improved nutrition on a cow’s milk based formula, but did not, it was said, change her underlying clinical condition. It was thought that she might have “relatively good hearing” although it was not known how her brain processed the sound. An ophthalmology review was awaited. Her kidneys were stable, although she remained on the same cocktail of drugs.

In answer to questions from the court, Mr. Lock stated that the Trust did not want to “hang on” to the declarations any longer that was necessary. However, in the doctors’ view, Charlotte’s lungs remained sufficiently precarious that an infection which did not prove to be susceptible to treatment by antibiotics and which required ventilation would have the same consequences for her as in March. The Trust wished, accordingly, to retain the declarations, although the matter was being kept under review, and the Trust would apply to discharge the declarations if they were no longer required.

We have identified this material in such detail in order to demonstrate the dilemma in which it placed us. We are, of course, a court of appeal, not of trial. Our function is to decide whether or not the judge made an error of law on 21 April 2005 when deciding to continue the declarations. It was neither appropriate nor, indeed, possible for us to attempt to analyse and evaluate the nature and effect of any changes in Charlotte’s condition since the judge had given judgment.

It is unusual in medical cases for declaratory relief to be granted against a shifting factual substratum. The reasons for this are self-evident. A declaration identifies a course of conduct which is lawful in a given set of circumstances. If the circumstances change, the relief granted by the declaration may no longer be appropriate. It follows, therefore, that a declaration based on Charlotte’s condition in March 2005 may no longer be appropriate if (and the “if” has to be stressed) there have been material changes in her condition.

In the event, however, we came to the conclusion that the two factors we have identified (the delay and the relevance of the changes in Charlotte’s condition) went, not to the merits of the appeal, but to the urgency of the need for a review of the declarations by the trial judge. It was, accordingly, for these reasons that we directed an accelerated review on proper evidence.

The judge directed himself as to the law in relation to Charlotte’s best interests in the judgment which he gave on 7 October 2004, and in his judgment given on 21 April 2005 applied the law as he had previously found it to be, albeit with the reinforcement and reassurance that his approach on 7 October 2004 had, in the interim, been approved by Dame Elizabeth Butler-Sloss P in Re L (Medical Treatment: Benefit) [2004] EWHC 2713 (Fam), [2005] 1 FLR 491 at 494 (paragraph 12) (hereinafter referred to as Re L)

The judge began his analysis with a reference to the decision of Munby J in R (Burke) v GMC to which we have also referred in paragraph 40 above, and to which we will return. The judge continued with a substantial citation from the judgment of Hoffman LJ (as he then was) in this court in Airedale NHS Trust v Bland [1993] AC 789 at 826 on the importance of the concept of the sanctity of life. He then made reference to two recent decisions of this court in the following terms: -

The judge went on to say that he had also derived considerable assistance from the decision of this court in Re J (a Minor) (Wardship: Medical Treatment) [1991] Fam 33 (hereinafter Re J). He cites passages from the judgment of Lord Donaldson of Lymington MR at pp 46-7 and of Taylor LJ at p 55, in particular where the latter said:

“I consider the correct approach is for the court to judge the quality of life the child would have to endure if given the treatment and decide whether in all the circumstances such a life would be so afflicted as to be intolerable to that child. I say "to that child" because the test should not be whether the life would be tolerable to the decider. The test must be whether the child in question, if capable of exercising sound judgment, would consider the life tolerable.”

Hedley J’s comment on the passages he cited is important. In what is plainly a reference to Taylor LJ’s judgment in Re J, and to paragraph 111 of the judgment of Munby J in R (Burke) v GMC (which we set out at paragraph 61 below) he says:

“Helpful though these passages are, it is in my view essential that the concept of "intolerable to that child" should not be seen as a gloss on, much less a supplementary test to, best interests.  It is a valuable guide in the search for best interests in this kind of case. ”

The judge then commented that ECHR in his view “adds nothing to the domestic law”, and concluded his review with a second citation from Re A, this time from the judgment of Thorpe LJ at [2000] 1 FLR 549 at 560, which, to avoid repetition later, we will set out at this point: -

“There can be no doubt in my mind that the evaluation of best interests is akin to a welfare appraisal. … Pending the enactment of a checklist or other statutory direction it seems to me that the first instance judge with the responsibility to make an evaluation of the best interests of a claimant lacking capacity should draw up a balance sheet. The first entry should be of any factor or factors of actual benefit. In the present case the instance would be the acquisition of foolproof contraception. Then on the other sheet the judge should write any counterbalancing dis-benefits to the applicant. An obvious instance in this case would be the apprehension, the risk and the discomfort inherent in the operation. Then the judge should enter on each sheet the potential gains and losses in each instance making some estimate of the extent of the possibility that the gain or loss might accrue. At the end of that exercise the judge should be better placed to strike a balance between the sum of the certain and possible gains against the sum of the certain and possible losses. Obviously, only if the account is in relatively significant credit will the judge conclude that the application is likely to advance the best interests of the claimant.”

The judge commented that although in Re A Thorpe LJ was dealing with an adult without capacity, it seemed to him that, with necessary variations, (not the least of which is the weight to be given to the views of the parents) the passage could helpfully be applied to children as well.

If the judge’s analysis of the law relating to the “best interests” question was correct, there was plainly material upon which he could properly both make and continue the declarations. The key question, accordingly, was: is the judge’s analysis of the law correct?

In arguing that it was not, Mr. Wolfe faced the double difficulty (1) that there had been no appeal against the October decision in which, on the argument he presented, the judge must have misdirected himself in law; and (2) that Mr. Wolfe’s criticism of the judge’s approach was founded on a dictum of Munby J in R (Burke) v GMC which the judge (as he was entitled to) had not followed, and which had not been approved by this court on the GMC’s appeal from Munby J’s decision.

Mr. Wolfe sought to overcome these difficulties by submitting that: (1) Munby J’s statement of the best interests test in R (Burke) v GMC was correct, and had been followed in this court in W Healthcare NHS Trust v KH (hereinafter Re KH) (17 September 2004, [2004] EWCA Civ 1324, unreported); (2) applying that test, it was difficult to argue that the judge was wrong in October 2004, given Charlotte’s condition at that point (properly then described as “intolerable”) and the pessimistic prognoses of the doctors; however (3) applying the test now, Charlotte’s life could not be said to be intolerable, and accordingly, aggressive treatment which would be likely to save her life and could restore her to her current state was in her best interests. The consequence was that Mr and Mrs Wyatt had been entitled to a finding that it was in her interests to be ventilated, and the judge had been wrong to continue the declarations.

The test enunciated by Munby J in R (Burke) v GMC derived from a submission made to him by Mr. Wolfe, who, as we noted in paragraph 40 above, was acting in that case for the DRC. Paragraph 111 of Munby J’s judgment follows an analysis of the case law on best interests, and reads: -

“I therefore agree with Mr Wolfe when on behalf of the DRC he submits that, when considering whether to withhold or withdraw ANH (artificial nutrition and hydration) from an incompetent patient, (1) the assessment of best interest has to be made from the point of view of the particular patient and (2) the touchstone of best interests in this context is intolerability.”

Whilst nobody would quarrel with proposition (1) in this extract, Hedley J rejected proposition (2) in the passage from his judgment which we have already cited in paragraph 55 above. In our judgment, he was not only entitled to do so, but correct. We prefer Hedley J’s formulation. However, as the “intolerability touchstone” approach purports to derive in substantial measure from the decision of this court in Re J, we need to examine that case in some detail.

We are conscious that in this part of the case we are dealing with an application for permission to appeal. The point, however, is one of importance, and the instant case offers a convenient opportunity to address it. We are also conscious of the fact that this court in its judgment in R (Burke) v GMC [2005] EWCA (Civ) 1003 did not think it necessary or appropriate to address the point when allowing the GMC’s appeal against Munby J’s decision. R (Burke) v GMC was a case about the possible withdrawal of ANH from a competent adult patient, and this court commented critically on the dangers of a court grappling with issues which were divorced from the factual context which requires their determination: - see paragraph 21 of the judgment, and this court’s citation from part of the speech of Lord Bridge of Harwich in Gillick v West Norfolk and Wisbech Area Health Authority [1986] AC 112 at 193-4. This court also counselled strongly against selective use of Munby J’s judgment in future cases, and in our view, Mr. Wolfe’s reliance on paragraph 111 of the judgment demonstrates clearly why this court in allowing the GMC’s appeal gave that advice.

To put Re J in context, however, we need first to look at the decision of this court in Re B (A minor) (Wardship: Medical Treatment) [1981] 1 WLR 1421 (hereinafter Re B). B was a girl who had been born with Down’s Syndrome. She also suffered from an intestinal blockage which was readily curable by an operation. However, if she did not have the operation, she would die. B’s parents refused their consent to the operation, on the ground that it would lead to B experiencing 20 to 30 years of life with severe mental and physical handicap. The local authority made B a Ward of Court and sought the court’s authorisation for the operation. The judge (Ewbank J) took the view that the parents’ wishes should be respected and refused to authorise the operation. The local authority appealed.

In allowing the appeal and giving what were extempore judgments under acute pressure of time, Templeman and Dunn LJJ both expressed themselves in somewhat emotive language. The former identified the issue in the following terms: -

“ … at the end of the day it devolves on this court to decide whether the life of this child is demonstrably going to be so awful that in effect the child must be condemned to die, or whether the life of this child is still so imponderable that it would be wrong for her to be condemned to die. ”

Giving a short, concurring judgment, Dunn LJ referred to the fact that there was no evidence that “this child’s short life is likely to be an intolerable one”.

What emerges clearly from Re B, in our judgment, is the bedrock proposition that the question which the court had to determine was what was in the best interests of B. Was it in her interests to have the operation, and live the life of a Down syndrome child, or not to have the operation, and die literally within a week? Put in those stark terms, the answer in 2005 may seem much clearer than it was in 1981, given in particular our increased knowledge of the educational and social goals which many Down’s Syndrome children are capable of achieving. The answer was, however, perfectly clear to this court, and the local authority’s appeal was allowed.

J, like Charlotte, was a very premature baby. He was born at 27 weeks’ gestation, and weighed only 1.1kg. He suffered very severe and permanent brain damage at the time of his birth, the brain tissue then lost being irreplaceable. He was epileptic and the medical evidence was that he was likely to develop serious spastic quadriplegia, would be blind and deaf and was unlikely ever to be able to speak or to develop even limited intellectual abilities. It was, however, likely that he would feel pain to the same extent as a normal baby. His life expectancy was uncertain but he was expected to die before late adolescence, although he could survive for a few years. He had been ventilated twice for long periods when his breathing stopped, that treatment being both painful and hazardous. The medical prognosis was that any further collapse which required ventilation would be fatal. However he was neither on the point of death nor dying. The question thus arose as to whether, if he suffered a further collapse, the medical staff at the hospital where he was being cared for should re-ventilate him in the event that he stopped breathing.

The judge, Scott Baker J., exercising the court’s inherent jurisdiction, made an order that J should be treated with antibiotics if he developed a chest infection but should not be re-ventilated if his breathing stopped unless the doctors caring for him deemed it appropriate given the prevailing clinical situation. The Official Solicitor appealed against the order, contending: (1) that except where a child was terminally ill the court could never be justified in approving the withholding of life-saving treatment from a child whatever the quality of the life being preserved; alternatively (2) that it ought to do so only if it was certain that the child’s life was going to be so intolerable that such a drastic conclusion was justified.

In reserved judgments, all three members of the court (Lord Donaldson MR, Balcombe and Taylor LJJ) unanimously agreed that the Official Solicitor’s appeal should be dismissed. All three unequivocally rejected the Official Solicitor’s first, “absolutist” submission. However, as to the second, alternative limb their reasoning on the question of the application of the best interests test was not identical, and only Taylor LJ appears to have accepted the Official Solicitor’s formulation of the test.

Giving the first judgment, Lord Donaldson MR conducted a thorough analysis of Re B, and in a passage partly cited by Hedley J said the following ([1991] Fam 33 at 46D): -

“Re B seems to me to come very near to being a binding authority for the proposition that there is a balancing exercise to be performed in assessing the course to be adopted in the best interests of the child. Even if it is not, I have no doubt that this should be and is the law.

This brings me face to face with the problem of formulating the critical equation. In truth it cannot be done with mathematical or any precision. There is without doubt a very strong presumption in favour of a course of action which will prolong life, but, even excepting the ‘cabbage’ case to which special considerations may well apply, it is not irrebuttable. As this court recognised in Re B, account has to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account has also to be taken of the pain and suffering involved in the proposed treatment itself. B was probably not a borderline case and I do not think that we are bound to, or should, treat Templeman LJ’s use of the words ‘demonstrably so awful’ or Dunn LJ’s use of the word ‘intolerable’ as providing a quasi-statutory yardstick. (emphasis added).

For my part I prefer the formulation of Asch J in Re Weberlist (1974) 360 NYS 2d 783 at 787 as explained by McKenzie J in the passage from his judgment in Dawson’s case (1983) 145 DLR (3d) 610 at 620–621 which I have quoted, although it is probably merely another way of expressing the same concept. We know that the instinct and desire for survival is very strong. We all believe in and assert the sanctity of human life. As explained, this formulation takes account of this and also underlines the need to avoid looking at the problem from the point of view of the decider, but instead requires him to look at it from the assumed point of view of the patient. This gives effect, as it should, to the fact that even very severely handicapped people find a quality of life rewarding which to the unhandicapped may seem manifestly intolerable. People have an amazing adaptability. But in the end there will be cases in which the answer must be that it is not in the interests of the child to subject it to treatment which will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child’s, and mankind’s, desire to survive. (emphasis added).

I make no apology for having spent time on the generality of the problem which faces doctors and the court in cases of this nature. The Official Solicitor invited us to do so and if we can succeed in achieving any degree of clarification, it will be worthwhile in terms of assisting those who have to make these very difficult decisions at short notice and in distressing circumstances. However, I now turn to the instant appeal.

The issue here is whether it would be in the best interests of the child to put him on a mechanical ventilator and subject him to all the associated processes of intensive care, if at some future time he could not continue breathing unaided.”

The citation from the judgment of Asch J in Re Weberlist as explained by McKenzie J in the passage from his judgment in Dawson’s case to which the Master of the Rolls refers is at [1991] Fam 33, 42G-H) and is in the following terms: -

“I do not think that it lies within the prerogative of any parent or of this court to look down upon a disadvantaged person and judge the quality of that person’s life to be so low as not to be deserving of continuance. The matter was well put in an American decision—Re Weberlist ((1974) 360 NYS 2d 783 at 787), where Justice Asch said: “There is a strident cry in America to terminate the lives of other people—deemed physically or mentally defective … Assuredly, one test of a civilization is its concern with the survival of the ‘unfittest’, a reversal of Darwin’s formulation … In this case, the court must decide what its ward would choose, if he were in a position to make a sound judgment.”

“This last sentence puts it right. It is not appropriate for an external decision maker to apply his standards of what constitutes a liveable life and exercise the right to impose death if that standard is not met in his estimation. The decision can only be made in the context of the disabled person viewing the worthwhileness or otherwise of his life in its own context as a disabled person—and in that context he would not compare his life with that of a person enjoying normal advantages. He would know nothing of a normal person’s life having never experienced it.”

The Master of the Rolls then identified the balancing exercise which had to be undertaken on the facts of the case, but specifically did not adopt the criteria identified by the Official Solicitor, or by Templeman and Dunn LJJ in Re B. Rather he identified the factors to which Scott Baker J had given weight, and approved his analysis. Thus ([1991] Fam 33 at 47H): -

“The basis of the doctors’ recommendations, approved by the judge, was that mechanical ventilation is itself an invasive procedure which, together with its essential accompaniments, such as the introduction of a naso-gastric tube, drips which have to be re-sited and constant blood sampling, would cause the child distress. Furthermore, the procedures involve taking active measures which carry their own hazards, not only to life but in terms of causing even greater brain damage. This had to be balanced against what could possibly be achieved by the adoption of such active treatment. The chances of preserving the child’s life might be improved, although even this was not certain and account had to be taken of the extremely poor quality of life at present enjoyed by the child, the fact that he had already been ventilated for exceptionally long periods, the unfavourable prognosis with or without ventilation and a recognition that if the question of re-ventilation ever arose, his situation would have deteriorated still further.

 I can detect no error in the judge’s approach and in principle would affirm his decision.”

Thus Lord Donaldson MR. Balcombe LJ, giving the second judgment, made his approach absolutely clear, when, having rejected the Official Solicitor’s “absolute” argument, he continued ([1993] Fam 33 at 52B-C): -

“(2)

The ‘qualified’ submission. Here again I cannot accept the submission in the terms in which it was framed, which treats the language used by Templeman and Dunn LJJ in Re B (a minor) (wardship: medical treatment) [1990] 3 All ER 927 at 929–930, [1981] 1 WLR 1421 at 1424 as if they had intended to lay down a test applicable to all circumstances, which clearly they did not. Further, I would deprecate any attempt by this court to lay down such an all-embracing test since the circumstances of these tragic cases are so infinitely various. I do not know of any demand by the judges who have to deal with these cases at first instance for this court to assist them by laying down any test beyond that which is already the law: that the interests of the ward are the first and paramount consideration, subject to the gloss on that test which I suggest, that in determining where those interests lie the court adopts the standpoint of the reasonable and responsible parent who has his or her child’s best interests at heart. (Emphasis added).

I turn finally to the question which arises in the instant appeal: should we overturn the substance of the order made by Scott Baker J? We would only be justified in so doing if we were satisfied that he had exercised his undoubted discretion on wrong principles or that there was no sufficient finding of fact, or evidence, which entitled him to make the order. In my judgment, the judge exercised his discretion on proper principles. There was no error in his approach and he found facts, which I have referred to briefly above and which are set out in greater detail by Lord Donaldson MR, which fully entitled him to make the decision which he did….”

It is thus only in the judgment of Taylor LJ that we find an attempt to identify in more detail what he describes as “the correct approach” ([1993] Fam 33 at 55E – F). This involves the court having “to judge the quality of life the child would have to endure if given the treatment and decide whether in all the circumstances such a life would be so afflicted as to be intolerable to that child”. Neither Lord Donaldson of Lymington MR nor Balcombe LJ applied that test.

It therefore appears to us that a best interests “test” based on the intolerability of the child’s quality of life has its origins in (1) extempore dicta in Re B not approved by the majority in Re J and (2) in only one of the three judgments in Re J. In our view, this supports the proposition that Hedley J was right to observe that the concept of “intolerable to the child” should not be seen as a gloss on, much less a supplementary test to, best interests. It is, as the judge observed, a valuable guide in the search for bests interests in this kind of case.

We gain re-assurance that Hedley J adopted the right approach from the decision of the President, Dame Elizabeth Butler-Sloss, in Re L, which was cited by the judge and to which we referred briefly in paragraph 52 above. In that case, a baby of 9 months suffered from Edward’s syndrome, an incurable condition manifesting a host of disabilities, from which most children died within a few weeks or months. The question was how his palliative care was managed. In summary, the doctors sought declarations that it would be lawful not to provide further aggressive treatment by mechanical ventilation. L’s mother did not agree. At paragraph 12 of her judgment, the President said: -

“12.

The NHS Trusts ask the court to decide in a situation where the parent and the Trusts cannot agree on a crucial issue affecting his life. In my approach to this problem I should respectfully like to endorse the principles set out by Hedley J in  Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 (Fam), in his judgment of 7 October 2004, otherwise the case of Baby Charlotte. As a baby, L. cannot choose for himself.  In summary, the test is "best interests" which are interpreted more broadly than "medical interests" and include emotional and other factors.  There is a strong presumption in favour of preserving life, but not where treatment would be futile, and there is no obligation on the medical profession to give treatment which would be futile.  I agree with Hedley J that the court should be focusing on best interests rather than the concept of intolerability although the latter may be encompassed within the former. ”

We also note that the President in that case went on to cite part of the passage from the judgment of the Master of the Rolls in Re J [1991] Fam 33 at 46 which we have set out at paragraph 71 above, which she said she was attempting to apply, and the wisdom of which she respectfully endorsed.

We would also wish, in this context, like the judge, wholeheartedly to endorse Dame Elizabeth Butler-Sloss’s statement in this court in Re A namely that “….. best interests encompasses medical, emotional and all other welfare issues: - see [2000] 1 FLR 549 at 555E-F. That is not only plainly right, but manifestly applies to a case involving a child, as does Thorpe LJ’s statement to similar effect in Re S [2001] Fam 15 at 30, again cited by the judge – see paragraph 53 above. We also, like the judge, would adopt and endorse the practical advice given by Thorpe LJ in the passage from Re A, which we have set out at paragraph 56 above”.

Mr. Wolfe placed considerable reliance on the decision of this court in Re KH. This was, however, an entirely different case on the facts. Firstly, of course, the patient was an adult, not a child. KH was a lady of 59 suffering from multiple sclerosis. She was not competent to make decisions about her own treatment. She was in a pitiful state, and had to be fed through a percutaneous gastronomy tube (PEG). On 29 August 2004 the PEG fell out, and she was admitted to hospital. In essence, the position was that the consultant physician and the doctors in charge of her case wanted to reinsert the PEG. Were it not re-inserted, KH would die of hunger and thirst, although any suffering in the process would be alleviated by drugs.

KH’s family, for honourable reasons, did not agree that the PEG should be re-inserted and wished KH to be allowed to die. KH had not, however, made an advance directive relating to her wish to receive or refuse treatment. The question of the re-insertion of the PEG thus came before Coleridge J, who supported the doctors. His decision was upheld in this court. Giving the leading judgment, Brooke LJ firstly agreed with the judge that KH was incapable of making any decisions. Secondly, he agreed that there was no advance directive. He went on:

Agreement with this passage from the judge’s judgment was, in our view, sufficient to dispose of the appeal. However, the court had been referred to Munby J’s decision in R (Burke) v GMC and, in particular, to paragraph 111 of that judgment. Brooke LJ related that passage to the judgment of Taylor LJ in Re J and continued: -

“25.

….. Lord Justice Taylor referred to a case of extremely painful treatment causing continuous agony or such continuous sedation as to lead to there being no conscious life at all. He concluded that part of his judgment by saying that the test must be whether "the child in question is capable of exercising sound judgment or would consider the life tolerable.

26.

Mr Francis' submissions have convinced me that there is a danger of detecting a substituted choice test in this passage. Normally the approach that the law should adopt is to determine whether, in the judgment of the court, the continuation of life would be intolerable. In one of the cases Lord Justice Thorpe has suggested that in these best interests cases the law should draw up a balance sheet, putting the advantages on one side and the disadvantages on another.

27.

The way that the judge came to the conclusion was that in KH's present state he was unable to say that life prolonging treatment would provide no benefit, and that death by, in effect, starvation would be even less dignified than the death which she will face in due course if kept artificially alive for more weeks or months or possibly years.

28.

The judgment is not ours to make. This is a court of appeal. The balance is for the judge of first instance to assess, and this court can only interfere on well recognised grounds if the judge has misdirected himself in law or there are reasons why we are entitled to fault the exercise of the judgment he concluded.

29.

The judge, having rightly put on one side the question whether there was a legally binding advance directive, looked, on the one hand, at the consequences of withdrawing nutrition and the effect this would have and, on the other hand, at the continuance of a life in which there is some feeling of pain, some sensation and some slight ability to answer questions. He came to the conclusion that it was in the best interests of the patient to accede to the unanimous wish of those who are responsible for her treatment.

30.

As I have said, the Official Solicitor supports this application. These cases are always agonisingly difficult. Nobody would wish to be in the position in which the members of this family find themselves. But judges have to apply the law as they find it. English law, as it stands at present, places a very heavy burden on those who are advocating a course which would lead inevitably to the cessation of a human life. In my judgment, it is impossible for this court to interfere with the judge's judgment.

31.

Accordingly I would dismiss this appeal.”

We would wish to make a number of comments about Re KH. Firstly, we are, of course, in no doubt that the case was correctly decided, both by Coleridge J and in this court. Secondly, we cannot but note that, rather like Re B, an extempore judgment had to be given by this court at 5.40pm on the same day as the judge had made the decision under appeal. Thirdly, it does not seem to us that the decision of either the judge or this court turned on the “intolerability” touchstone. The extracts which we have cited from both the judgment of Coleridge J and this court make that clear. Fourthly, it was, as we have already pointed out, a case relating to an adult patient.

Moreover, we do not think, however, that in using the phrase: - “normally the approach that the law should adopt is to determine whether, in the judgment of the court, the continuation of life would be intolerable” Brooke LJ was intending to lay down any general guidance, let alone guidance applicable to cases involving children. He was, we think, simply commenting on a submission which had been made to the court. As we have already indicated, we not only think that Re KH is readily distinguishable from the instant case on the facts, but that any observations on “intolerability” were obiter, given that the judge had decided the case by a careful balance of all the factors in the welfare equation.

For all these reasons, we came to the clear conclusion that the judge had approached the best interests question correctly, and that permission to appeal against his decision in principle to make the declarations should be refused. We have taken some considerable time over this part of the case because we think it important that in cases of this sensitivity and difficulty, the guidelines which the experienced judges of the Family Division have to follow should be both as clear and as simple as is consistent with the serious issues which they engage.

It is nearly always a matter of regret when the debate relating to the treatment of a seriously disabled or sick child, which frequently involves issues of life and death, needs to be conducted in a courtroom, rather than a hospital or a consulting room. Where that happens, however, the forensic debate should, in our judgment, be unfettered by any potentially contentious glosses on the best interests test which are likely either inappropriately to shift the focus of the debate, or to restrict the broad exercise of the judicial discretion involved in balancing the multifarious factors in the case.

In our judgment, the intellectual milestones for the judge in a case such as the present are, therefore, simple, although the ultimate decision will frequently be extremely difficult. The judge must decide what is in the child’s best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the patient (Re J). There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable (Re J). The term “best interests” encompasses medical, emotional, and all other welfare issues (Re A). The court must conduct a balancing exercise in which all the relevant factors are weighed (Re J) and a helpful way of undertaking this exercise is to draw up a balance sheet (Re A).

Inevitably, whilst cases involving the treatment of children will fall into recognised categories, no two cases are the same, and the individual cases will, inevitably, be highly fact specific. In this context, any criteria which seek to circumscribe the best interests tests are, we think, to be avoided. As Thorpe LJ said in Re S “it would be undesirable and probably impossible to set bounds to what is relevant to a welfare determination”.

This is not, of course, to say that the judge has carte blanche to do what he or she likes. The judge must in each case perform the balancing exercise identified by the Master of the Rolls in Re J , helpfully amplified by the “balance sheet” approach advocated by Thorpe LJ in Re A. The Master of the Rolls’ reminder of the quality of life enjoyed by the handicapped is salutary. At the end of the day, however, it is for the judge to strike the balance between benefit and harm, as Scott Baker J did in Re J and, we think, as Hedley J did in this case.

We urge caution in the application to children of factors relevant to the treatment of adults, although some general statements of principle plainly apply to both. We repeat that R (Burke) v GMC concerned the prospective withdrawal of ANH from a competent adult patient. It was not concerned with what was meant by best interests in the context of the treatment of an incompetent child. At best, therefore, Munby J’s identification of “intolerability” as the touchstone of best interests is obiter. In the context of what we have said above, however, it seems to us demonstrate the disadvantages we have identified in paragraph 86 above.

We do not, however, dismiss “intolerability” as a factor altogether. As we have already stated, we agree with Hedley J that whilst “intolerable to the child” should not be seen either as a gloss on or a supplementary guide to best interests, it is, as he said, a valuable guide in the search for best interests in this kind of case.

The judge’s thinking on the timing question is set out in paragraphs 17 to 22 of his judgment. We have already set out paragraphs 21 and 22 in paragraph 38 above. The judge’s reasoning leading up to those two paragraphs is in the following terms: -

“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] 2 FLR 905 (CA) ( Glass 1).  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] 1 FLR 1019 (Glass II) 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.”

In attacking the judge’s decision on this point, Mr. Wolfe skilfully re-engaged all the arguments available to him consequent upon the improvements in Charlotte’s condition. He made the point that although the judge had intended that his approach would obviate the need for the court to be involved if Charlotte required to be ventilated prior to the October review, it was in fact highly unlikely to have that effect. The reason for this was simple. If Charlotte required ventilation (say because of an infection) but in other respects had continued to improve – in particular if her lungs had strengthened to the point at which they could tolerate ventilation – the current declarations could not properly provide the necessary legal protection to the treating doctors as they had when the evidence on which they were obtained had been given. Thus if Mr and Mrs Wyatt disagreed with the doctors, the involvement of the court would be inevitable. It should therefore be for the Trust to apply at that point for a declaration and not - as Mr. Wolfe in a powerful advocate’s phrase put it – to have a declaration permitting inaction in its back pocket.

Furthermore, Mr. Wolfe argued, if the Trust did not apply at the relevant time, the Wyatts would have to do so. That, however, impermissibly reversed the onus. By making the declaration now, Mr and Mrs Wyatt were being pre-emptively excluded from the decision making process on the best interests of Charlotte, and although they had been promised in the letter of 11 August 2005 that they would be consulted, the decision had in reality been inappropriately taken away from them.

Mr. Wolfe submitted that the normal procedure should have been followed. The need to ventilate was unlikely to arise as a matter of urgency: it was more likely that there would be a period of several days during which Charlotte would gradually succumb to a respiratory infection. The Trust should be required to apply for a declaration on the facts as they then were rather than as they had been several months previously. Whilst the judge may have been right to say that no new issues would arise, the evidence might well be very different.

Mr. Wolfe expanded on these issues in his supplementary skeleton argument and in his oral submissions. He pointed out that in the reported cases in which prospective declarations had been made, the child’s condition was likely only to deteriorate. The exception was Glass II, in which the ECtHR had criticised the Trust for not seeking the intervention of the High Court at an earlier stage, rather than leaving its application until there was a crisis, but the thinking of the ECtHR had been that the child’s condition was likely only to deteriorate, and that the intervention of the court at some point was going to be inevitable if the Trust wished to override the wishes of the child’s mother. Even in Re J, where the declaration had been open-ended, there had been only limited potential for improvement, and in A National Health Trust v D [2000] 2 FLR 677 (hereinafter Re D), the child’s condition had been worse than Charlotte’s and was deteriorating at the time Cazalet J made his prospective and open-ended declaration.

Mr. Wolfe thus placed heavy reliance on the decision of this court in Glass I where an open-ended declaration as to what would be in the child’s best interests was refused. He submitted, in summary, that a distinction had to be drawn between (1) the situation in which the person seeking to justify withholding life-saving treatment could show through strong evidence and with a high degree of confidence that the patient’s condition was below the threshold at which ventilation would be appropriate and stable or deteriorating; and (2) the situation in which improvement is underway such that, even if ventilation would not be appropriate now it might well be so in the changed circumstances in which it might be required: i.e. where the threshold could realistically be crossed. In the latter situation, the court should not make a declaration such as that made here; the issue of best interests should be resolved by reference to the actual circumstances of the time. The judge was thus wrong in principle to continue the widely framed and open ended declaration as he did.

For the Trust, Mr. David Lock submitted that the decision on timing had to be seen in the overall factual context of the case (as outlined earlier in this judgment) and that on the facts of this case there was a balance to be struck between: (a) applying in advance of a crisis when the exact medical evidence may be subject to some revision; and (b) waiting for a time which is nearer the crisis but with all the practical problems of a rushed hearing. He argued that the issue upon which the court should focus upon was, simply: what procedure is more just for the child?

Following the decision of the House of Lords in D v East Berkshire Community Health NHS Trust [2005] UKHL 23, [2005] 2All ER 445, Mr. Lock submitted that the clinicians owed no legal duties of care to the parents but had legal obligations to give effect to their wishes unless superseded by the court. He accepted that the Trust had a professional obligation to involve Mr and Mrs Wyatt fully in drawing up a care plan and, subject to any application to the court, it was Mr and Mrs Wyatt who made decisions about whether to accept the treatment plan for their child.

Mr. Lock submitted that applications are only made to the court by NHS Trusts in the most unusual of circumstances where, even giving due consideration for the views of the parents, the Trust cannot accede to the treatment plan proposed by the parents. The Trust further accepted that until the court had ruled, the views of the parents took precedence. Thus, in the period between issue of proceedings and judgment, the usual situation was that the views of the parents prevailed unless the clinicians could not, consistent with their professional views, follow the parents’ instructions.

Mr. Lock accepted that if an application was made in advance of a medical situation where choices needed to be made, it followed that the precise medical position of the child at the time of the anticipated crisis could not be described with total accuracy. Accordingly, as in this case, he submitted that it was only appropriate to make the application in advance:

Mr. Lock advanced five reasons why, in the instant case, it was far more just to deal with the question in advance, These were:

Mr. Lock also relied on Glass II for the proposition that an application in sufficient time to enable a considered hearing of the case had been advocated by the ECtHR. The successful complaint in that case (which involved substantially the same paediatric team and the same solicitors for the parents) surrounded events on 20 October 1998. A disagreement over the appropriateness of resuscitation had been recorded by Dr. W on 8/9 September 1998, some six weeks before, and the parents said that an application should have been made to the court. Mr. Lock pointed out that the Court observed at paragraph 79:

“It has not been explained to the Court’s satisfaction why the Trust did not at that stage seek the intervention of the High Court. The doctors during this phase all shared a gloomy prognosis of the first applicant’s capacity to withstand further crises. They were left in no doubt that their proposed treatment would not meet with the agreement of the second applicant. Admittedly, the second applicant could have brought the matter before the High Court. However, in the circumstances it considers that the onus was on the Trust to take the initiative and to defuse the situation in anticipation of a further emergency” (Emphasis added)”

The Court had further observed at paragraph 80:

“….. However, in so far as the Government have maintained that the serious nature of the first applicant’s condition involved the doctors in a race against time with the result that an application by the Trust to the High Court was an unrealistic option, it is nevertheless the case that the Trust’s failure to make a High Court application at an earlier stage contributed to this situation.”

Mr. Lock submitted, accordingly, that in the instant case both the Trust and the court had followed the procedure set down by the ECtHR in Glass II. In those circumstances, it would not be a correct exercise of judicial discretion to refuse to rule on the medical issues on the ground that there may be a slightly different medical condition immediately prior to an emergency.

The Guardian supported the judge for the reasons he had given. Through her counsel she expressed considerable concern if the law was that decisions as to whether or not Charlotte should receive artificial ventilation could only be taken on an emergency basis in the throes of a life and death crisis. Best practice, she submitted, involved having a treatment plan in place which was understood and, ideally, accepted by everybody, so that when the crisis came, about, the focus could be on the child rather than on the conflict between the parties. Even if, as the parents argued, the onset of the crisis was not so sudden as to require an out of hours application with virtually no evidence, it would simply not be possible for any emergency hearing to take place with the extensive and detailed medical evidence and argument which had been a feature of this case. There was thus a high likelihood of Charlotte having to be ventilated in order to await the decision of the court, however much that might be against her best interests.

The guardian submitted that Glass I was not authority for the proposition that a dispute between doctors and the parents of a gravely ill child should not be referred to the court until a crisis had actually arisen. The guardian distinguished the decision of this court in Glass I on the grounds that a central aspect of the decision in that case was that it was not at all clear that there would be any dispute in the future between the parties to the court. However, the guardian relied on Glass II and in particular paragraphs 78 and 79 of the judgment of the ECtHR. We have already set out the material parts of paragraph 79. Paragraph 78 reads: -

“78.

Turning to the “necessity” of the interference at issue, the Court considers that the situation which arose at St Mary’s Hospital between 19 and 21 October 1998 cannot be isolated from the earlier discussions in late July and early September 1998 between members of the hospital staff and the second applicant about the first applicant’s condition and how it should be treated in the event of an emergency. The doctors at the hospital were obviously concerned about the second applicant’s reluctance to follow their advice, in particular their view that morphine might have to be administered to her son in order to relieve any distress which the first applicant might experience during a subsequent attack. It cannot be overlooked in this connection that Dr Walker recorded in his notes on 8 September 1998 that recourse to the courts might be needed in order to break the deadlock with the second applicant. Dr Hallet reached a similar conclusion following his meeting with the second applicant on 9 September…..

The guardian relied on the English authorities for the proposition that in each of a number of cases relating to the medical treatment of babies, the application to the court in relation to what treatment would be in the child’s best interests had been made in advance of a medical crisis, albeit in anticipation of it. The guardian relied in particular on the decision of Cazalet J in Re D (see paragraph 96 above) and on the judgment of Lord Donaldson of Lymington MR in Re J.

The guardian submitted that Mr. and Mrs. Wyatt’s concern that leaving the declarations in place (rather that requiring an application to be made when a crisis arose) effectively excluded them from the decision making process was not borne out by the facts. Mr and Mrs Wyatt had been consulted on every aspect of Charlotte’s treatment, and it was the Trust’s contention that post 8 October 2004 Mr. and Mrs Wyatt were seeking to dictate the details of Charlotte’s treatment which led to the order of 17 December 2004 set out in paragraph 22 above.

The guardian concluded by submitting that the judge’s reasons on this part of the case could not be criticised. There had been clear medical evidence supporting the need for a decision without delay so that a full treatment plan could be put in place. The judge was plainly right to anticipate a disagreement between the Trust and Mr and Mrs. Wyatt, and in paragraph 18 of his judgment, he accurately described the predictable stresses and difficulties which would surround a crisis in Charlotte’ condition. The guardian’s view was that it would be wholly contrary to Charlotte’s best interests for such a crisis to be overshadowed by a major legal conflict and that it would be highly unlikely for such a crisis to raise issues which had not already been canvassed before the judge.

We have not found this part of the case altogether easy, and it seems to us that the arguments are quite finely balanced. From the perspective of the Trust and the guardian, we quite see the advantages, in terms of Charlotte’s treatment, of there being in place a treatment plan which can be implemented without further application to the court. On the other hand, we detect a tension between the concept of a declaration, which is designed to state what is lawful in given circumstances, and a situation which is sufficiently fluid to render it likely that the circumstances may change, with the consequence that the lawfulness of the conduct identified in the declaration may be called in question.

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, consequences. 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.

That is not the case here. If (and we have already emphasised the “if”) Charlotte’s condition has altered sufficiently so that it is no longer inappropriate to ventilate her if she sustains a serious infection, the declarations made by the judge in October 2004 and continued in April 2005 may no longer be lawful. And if such declarations are capable of becoming unlawful due to changes of circumstances, was it appropriate to make them in the first place?

In our judgment, like so much of the law in this area, the answer has to be fact and case specific. In other words, each case has to be decided on its particular facts. On the facts of this case, which includes the history which we have outlined in paragraphs 17 to 25 above, and the powerful medical consensus that Charlotte’s underlying condition had not changed, the judge, in our view, was both entitled to continue the declarations, and right to order a review. We think his reasoning sound. We are, furthermore, impressed by the five reasons advanced by Mr. Lock and set out in paragraph 102 above. We give particular weight to the reasons we have identified as (4) and (5). The declarations are permissive, not mandatory, and the letter to Mr and Mrs Wyatt (part of which we set out in paragraph 43 above) makes it clear that the Trust’s current decision not to re-ventilate Charlotte is being kept under clinical review and will be discussed with her parents before it is implemented.

We therefore accept the submissions on this part of the case made by the Trust and the guardian. Furthermore, although we have made it clear that we are unable to analyse the fresh information put before us on Mr and Mrs Wyatt’s behalf, we bear strongly in mind the judge’s finding in April 2005 that nothing had changed in Charlotte’s underlying condition, even though its consequences had substantially ameliorated. The judge based this finding in part on the evidence of Dr. C, a consultant paediatric neurologist not employed by the Trust, who had reported in September 2004 that “if she is to survive she will have a four limb cerebral palsy in the form of spastic dystonic quadriparesis with severe miscrocephaly and implicit profound cognitive development”. In March 2005, Dr. C’s view had not changed. Using less technical language, the evidence of the consultant paediatrician in charge of Charlotte’s case in March 2005 was that there had been no material change in Charlotte’s underlying condition, and in particular the lack of any growth in the size of Charlotte’s head meant that she would not “grow up” in any sense, and would remain in total dependency for as long as she lives. Hedley J described Charlotte’s neurological condition as “about as bad as it could be”.

Whilst, as the Trust acknowledges, it may be very difficult for Mr and Mrs Wyatt to accept that Charlotte’s underlying condition has not altered, that was clearly the Trust’s evidence before the judge, which, as we have already made clear, he was entitled to accept.

We would, however, as a matter of practice, counsel caution in making declarations involving seriously damaged or gravely ill children which are open-ended. In the same way that this court said in R (Burke) v GMC that it is not the function of the court to be used as a general advice centre (see paragraph 21 of this court’s judgment), it is, in our view, not the function of the court to oversee the treatment plan for a gravely ill child. That function is for the doctors in consultation with the child’s parents. Judges take decisions on the basis of particular factual sub-strata. The court’s function is to make a particular decision on a particular issue.

As a general proposition, therefore, we have reservations about judges making open-ended declarations which they may have to re-visit if circumstances change. But all that said, we came to the clear conclusion that Hedley J had indeed thought through the implications of what he was doing, and was entitled both to make and renew the declarations.

Ideally, Charlotte’s treatment (using that term to include the decision not to ventilate) should be a matter of agreement between the Trust and Mr and Mrs Wyatt. The strains on Charlotte’s parents have been substantial, but it has to be said that their conduct in the past has been less than helpful. Reporting the doctors in this case to the police achieves nothing. Everybody sympathises with the parents of a disabled child, but there are limits to that sympathy when parental conduct ceases to bear any relation to the child’s welfare. As we stated earlier in this judgment, we were pleased to learn that the relationship between Mr. and Mrs. Wyatt and the Trust has improved. We entertain the hope that at the forthcoming review the judge will be able to approve an agreed treatment plan, but if he cannot, he will decide the issues before him applying the law relating to Charlotte’s best interests, as he has found it to be. As to the outcome of the review we, of course, say nothing.

These, accordingly, are the reasons why we refused Mr and Mrs. Wyatt permission to appeal against the judge’s application of the best interests test, and dismissed their appeal against the judge’s decision to continue the declarations pending their review.