COURT OF APPEAL (CIVIL DIVISION)
ON APPEAL FROM THE HIGH COURT OF JUSTICE
MR JUSTICE HEDLEY
Strand, London, WC2A 2LL
B e f o r e :
LORD JUSTICE WALL
LORD JUSTICE LLOYD
| DARREN & DEBORAH WYATT
|- and -
PORTSMOUTH HOSPITAL NHS
CHARLOTTE WYATT (A CHILD)
(By her guardian ad litem CAFCASS Legal Services)
David Lock (instructed by Mills & Reeve - Solicitors) for the 1st Respondent
Huw Lloyd (instructed by CAFCASS Legal) for the 2nd Respondent
Hearing date : 25th August 2005
Crown Copyright ©
Lord Justice Wall: :
This is the judgment of the court.
"…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)."
What this case is about, and what it is not about
The history of the proceedings
1. Charlotte, as a child, lacks capacity to make decisions about medical treatment to be delivered to herself for her physical health care.
2. Having regard to Charlotte's best interests, and in the event that the paediatric medical consultants responsible for Charlotte's case, at (the Trust), the Southampton University Hospitals NHS Trust or any NHS Trust treating Charlotte, consider that she is suffering an infection which has or may lead to a collapsed lung, it shall be lawful for the doctors treating Charlotte to provide all suitable medical care including antibiotics.
3. That in the events anticipated in paragraph 2 above, and having regard to Charlotte's best interests:
(i) in the event that the responsible paediatric medical consultants reach a decision that Charlotte's medical condition shall have deteriorated to such an extent that she is unable to maintain oxygen and carbon dioxide exchange, it shall be lawful for responsible paediatric medical consultants to reach a decision that she should not be intubated and / or ventilated.
(ii) Whilst the responsible paediatric medical consultants may reach a decision that it is appropriate to administer Continuous Positive Airways Pressure (CPAP) to help keep Charlotte's airways open and to ease Charlotte's breathing, if she is visibly distressed by CPAP, it shall be lawful for the responsible paediatric medical consultants to reach a decision that CPAP shall be withdrawn.
(iii) The responsible paediatric medical consultants shall be entitled to reach a decision to use symptomatic relief which may be in the form of opiates in the knowledge that this may depress Charlotte's efforts to breathe whilst making her more comfortable.
1. The medical consultants responsible for Charlotte's care shall have the discretion to determine what palliative care and treatment shall be provided to Charlotte in her best interests on the basis of the use of the drugs and nursing procedures set out in the Schedule hereto.
2. The Clinicians shall be entitled to vary the amounts of the drugs set out in the Schedule hereto provided the said variations constitute only appropriate palliative care.
3. Nothing in this order shall prevent (the Trust's) consultants and (Mr. and Mrs. Wyatt) agreeing further or different medical treatment for Charlotte.
Charlotte's medical condition and the decision made by the judge on 7 October 2004
"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."
5. Charlotte was born at Portsmouth Hospital on 21 October 2003 at 26 weeks gestation and weighing 458 grammes (about 1 lb.). She was placed in an incubator and has in fact never left hospital. It is the unanimous view of the doctors that she is most unlikely ever to do so.
6. She has suffered a long and complex medical history since her birth. She has had severe respiratory failure requiring ventilation for most of her first three months. She has pulmonary hypertension resulting from the damage to her lungs with recurrent urinary tract infections and worsening kidney function. However in July 2004 she suffered a severe infection for which she was admitted to the paediatric intensive care unit at Southampton Hospital. Since this time she has exhibited a profound and persistent deterioration especially in her respiratory and neurological functioning.
7. Charlotte has been seen and assessed by many consultants apart from those having her care at Portsmouth and Southampton. For reasons that I explained in a judgment on 30 September 2004 (and do not need to repeat here) all consultants and all other Trusts have been granted anonymity and will accordingly be referred to by letter. Trust B (an important paediatric tertiary centre) has made available three consultants. Dr A and Dr B are consultant paediatric intensivists whilst Dr C is a consultant paediatric neurologist. Dr F, a consultant paediatrician in respiratory medicine is employed by Trust A and Dr G (instructed by the parents) is a consultant paediatric intensivist and respiratory physician employed by Trust B. Although there were differences between them in relation to prognosis, there was no dispute as to Charlotte's present condition.
8. Charlotte's head size, weight and length were all below 0.4th centile which in practice means as small as they can be. Her weight is increasing but that is not matched by growth in head circumference or length. The implication of head growth at so slow a rate was explained by Dr C. She said that it was indicative of brain damage and there was no longer any possibility of significant brain growth. She does not respond to stimulation, experiences involuntary reflex movements which are the most likely explanation for gripping an adult finger. She is, however, able to and does experience pain and distress. She will have minimal cognitive function but she will be able to experience pain of future treatment. She is very likely to develop epilepsy.
9. She requires very high levels of supplemental oxygen in order to be able to breathe. That means that she needs more than can be administered by nasal tube and in fact at present she needs to have her head covered with a transparent plastic box and receives (and needs) almost the maximum oxygenation that it is possible to give. If she is removed from the box she usually becomes visibly distressed and turns profoundly blue and takes a long time to return, on replacement, to her original condition. The problem is that these levels of oxygenation in themselves damage the lungs and that is why everyone recognises the near certainty of her needing ventilation to sustain physical life in the next few weeks or months.
10. Charlotte's kidney functions are also deteriorating and are incapable of repair. She will not be eligible for a transplant but will in due course, if she survives, require dialysis.
11. Prognosis is notoriously difficult. Should she survive, all accept Dr C's neurological prognosis and that in relation to her kidney function. All accept the chronic damage to her lungs and the pulmonary hypertension and the risks that poses to the cardio-vascular system which itself seems presently undamaged. All agree that she is highly likely to catch a respiratory infection which would require ventilation. The most optimistic prognosis for survival for 12 months is 25% although in oral evidence and when pressed the realistic figure was 5% or less. Hence my opening comment. That said, there can never be certainty.
"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."
"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."
Charlotte's condition in March / April 2005
"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 medical evidence in March / April 2005
9. …..Dr A begins by recognising that is a remarkable achievement that Charlotte has survived the winter; it was flat contrary to his expectation. That said, however, he thought it "virtually inevitable" that there would be some respiratory crisis which would be more than she could cope with particularly if it were a primary infection. He points to her severe chronic lung disease and that her defences will be further weakened by her malnutrition. His view is that she would not survive such an event whatever aggressive invasive treatment was tried. Even were she to do so, he regarded a return to her present state as so unlikely that such intervention simply would not be justified. In so saying, of course, he had in mind the dramatic deterioration and permanent brain damage incurred after the last intensive care intervention in July of last year.
10. Dr G began by rightly drawing attention to the improvement in Charlotte's condition. In his view she was following a pattern of improvement seen in such children "so long as she does not succumb". He accepted the real risk of infection and the grave consequences that could befall this child. More overtly in his oral evidence, as opposed to his written evidence, he said that if she did succumb to infection then ventilation would be justified. It was his view that provided in due course she could be got off the ventilator it was more than likely that she would return to her baseline condition. He clearly placed weight on the fact the parents want everything done. That said he would continue to counsel care short of ventilation and further recognised that if she did not respond quickly to ventilation her resultant quality of life would be 'awful'. Moreover, he recognised that if irreversible damage had been done (as with for example a RVS infection) it would not be right even to attempt ventilation. His view was that ventilation being a reversible procedure should be tried if one could not be sure that terminal damage had already occurred if that is what the parents want.
11. Dr H identified here a clash of philosophy between those who believe that if a treatment is available it should be used and those who believe (whatever others may want) that a treatment should only be used if it will achieve something. She was firmly of the view that in the event of overwhelming infection ventilation would not only achieve nothing, it would imperil a peaceful death. Dr F was clearly of the view that all treatment up to but not including ventilation would be appropriate. Dr I said he would regard transfer to an intensive care unit as 'oppressive' to Charlotte because to do so would in his view serve no purpose. He added that whilst he might be sympathetic in principle to 'short term' ventilation he believed it impossible to deliver in practice. The neurologists Dr J and Dr C were not asked to express specific views on intensive care.
The issues for the judge in March / April 2005 and his conclusions
13. In my judgment there are two questions in this case that have to be answered in the light of the best interests test. First, in the event of an overwhelming respiratory infection, whether it would be right to attempt or refrain from aggressive intervention by way of intubation, transfer to a tertiary centre and ventilation. Secondly, if the indications are that such treatment should be withheld, should that decision be made now or should it await the crisis and then be resolved in the light of that. I recognise specifically the overwhelming probability that in the event of such a crisis the parents would want intensive intervention and Portsmouth would decline it.
"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."
"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."
The hearing before us
"…. 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.
1. Although remaining in her head box for much of the time, Charlotte now spent a few hours each day on nasal cannullae, when the oxygen she needed was administered by a tube sitting across her frenulum with prongs up into her nose. Whilst receiving oxygen in this way, she is able to be seated in a chair and can be given "tasters" of pureed food in order to give her the sensation of it in her mouth.
2. Charlotte had gained weight. She was now 7.79kg, about 0.5kg below the 0.4 centile for her adjusted age. She has grown in length and is now 66.2cms. Her head circumference had remained at 35cms for some while but is now 35.9cms, part of which could be due to hair growth.
3. Charlotte was now on 12 litres of oxygen producing about 40 to 50% of oxygen in her head box. She continued to be fed via a tube inserted into one nostril. She currently receives 28mls infatrini each hour for 19 hours of the day, and receives an additional 30mls of water twice a day. She is due to receive a number of vaccinations.
4. Charlotte can show what may be 'enjoyment' of things now. She makes facial movements, opening her mouth and eyes a bit more, that might suggest she gains some pleasure, e.g. when she is being tickled. (The consultant in charge) would place this at what would be expected of a 2-4 week child.
5. Her limited head growth suggests that whilst she may gain some further skills, there would come a point where she can go no further.
6. Mr and Mrs Wyatt would like Charlotte at home. This could happen in the future if Charlotte was able to tolerate nasal cannullae all the time or her level of oxygen reduced sufficiently that it would be managed at home.
7. The Trust wished the declarations to continue. Any decision regarding its use would need to be based on the exact clinical circumstances at the time.
8. The Guardian had met Mrs. Wyatt at the hospital. She confirmed that she wanted Charlotte home, but it would require a move, receipt of necessary equipment and Charlotte would need to be down to 30% oxygen in the head box. She had been on the nasal cannulae for seven hours one day in the previous week.
9. The Guardian's observations of Charlotte confirmed the changes in Charlotte. She had quite a head of hair; she had grown in length and size and appeared able to fix and follow more consistently with her eyes. She also grasped the Guardian's finger when she placed it in Charlotte's hand.
The "best interests" question: the approach of the judge
23. Best interests must be given a generous interpretation. As the President said in Re A (Male Sterilisation)  1 FLR 549 ...hereinafter Re A) at p. 555:
"…best interests encompasses medical, emotional and all other welfare issues"
In Re S (Adult Patient: Sterilisation)  Fam 15 (hereinafter Re S) Thorpe LJ says at page 30:
"In deciding what is best …. the judge must have regard to …. welfare as the paramount consideration. That embraces issues far wider than the medical. Indeed it would be undesirable and probably impossible to set bounds to what is relevant to a welfare determination."
In my judgment the law is indeed expressed in the very wide form apparent from those quotations. The infinite variety of the human condition never ceases to surprise and it is that fact that defeats any attempt to be more precise in a definition of best interests. That said, helpful attempts have been made to tease out this concept but they always have to be viewed as no more than attempts at illumination.
"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."
"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. "
"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 attack on the judge's assessment of the law relating to best interests
"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."
Re B (A minor) (Wardship: Medical Treatment)
" … 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. "
"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."
"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 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."
"(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)  3 All ER 927 at 929–930,  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…."
"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  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. "
22. One is then left with stage 3, which is where the patient's best interests lie. The way that the judge put it was in these terms (I quote from a draft from which he read his judgment; we do not have a transcript):
"Although I have no doubt at all that she said what the relatives say she said in this regard the expressions [were] not of [the] quality or focus to constitute an advance directive. However, that is not [to] say they should be ignored. I have them well in mind when looking at the wider question of her best interests."
After referring to the propositions of law that had been advanced by the Official Solicitor, the judge said:
"The relatives are unanimous; their case is [that] their sister's or mother's life is intolerable now. Her condition is such that she recognises nobody and relatives visit [her] infrequently because it is too distressing to see her in that state. So it is a vicious circle. She is not being allowed to die with dignity and her wishes and the genuine views as I accept of the family should prevail. As her daughter ..... put it, it is not ending her life because she does not have a life at all anyway.
I have, as I have already emphasised, found this to be an extraordinarily difficult decision. I have listened with the greatest care and sympathy to the family's pleas, but in the end I find the law as it presently stands precludes me from acceding to them. The Court cannot in effect sanction the death by starvation of a patient who is not in a PVS state other than with their clear and informed consent or where their condition is so intolerable as to be beyond doubt. This patient is sufficiently conscious and sentient to appreciate and experience the effects of death by starvation over weeks and so to adopt Munby J, I cannot say that life-prolonging treatment (in this case feeding via the PEG) would provide no benefit. I appreciate that it is a very fine balance in this case but death by this route would in my judgment be even less dignified than the death which she will more probably face at some time in the more distant future. I am very sorry for the family, but in my judgment the law has not yet reached the stage where their arguments can rule the day."
"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."
Conclusion on the "best interests" question
The substantive appeal: the timing question
"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  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  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."
The attack on the judgment
The case for the Trust on the timing question
(a) where there is a reasonable degree of confidence that the anticipated medical situation where choices will have to be made will occur;
(b) there is both (i) medical evidence of the child's present condition; and (ii) a reasonable degree of confidence about describing the child's medical position, as it is expected to be, leading up to the anticipated situation, and
(c) where the complexity of the case means that it would not be just or appropriate to seek to have the issue resolved by the court at an urgent hearing when the events have started to happen.
(1) the evidence in this case had taken at least one month to assemble. It would not be possible to put such detailed or expert evidence before the Court at a few hours notice. In particular expert evidence, which has been of great assistance to the Court, could only be both available and relevant if the hearing is held in advance of a crisis;
(2) a hearing in advance gave Mr and Mrs Wyatt the chance to put a considered position before the court, to instruct their own experts and to be engaged in a process which might well lead to an agreement with the clinicians on a way forward that avoided the need to go to court. Only a tiny proportion of consent to treatment cases which come to lawyers for advice end up before the court. The vast majority were resolved when additional experts were brought into the case (on either side); when mediators were used, and when the prospects of proceedings focused everyone's minds. All this would be lost if cases could only be brought at the last minute;
(3) the judge had already recognised the strain on clinicians in this case. That stress would be significantly greater if they had not been able to seek the protection of a court order when criticised or reported to the police (or the GMC - which had not happened in this case but had in other cases);
(4) the existence of a court order did not dictate what clinicians should do and did not absolve them of their duty to act in the best interests of a child. It merely provided a clear legal framework within which the clinicians could act to deliver their obligations to their patient. However in this case the clinicians would like to make it clear that if Charlotte had an unpredictable deterioration (i.e. not the respiratory deterioration that has been predicted by them and the experts to be most likely) then they would seek advice rather than simply try to rely on the current judgment. They would thus seek to reassure the Court that they are keeping an open mind on her best interests.
(5) until the court has ordered otherwise, the clinicians must follow the instructions of the parents. In practical terms, in this case if there were not a court order the clinicians would be obliged to resuscitate Charlotte whilst the hearing was being sought and proceeding. That would, to a very large extent, render the hearing unnecessary and mean that the doctors would be obliged to follow the parents' wishes and thus act in a way that they considered to be against the patient's best interests.
"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)"
"….. 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."
The position of the Guardian on the timing question
"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…..