The NHS Trust v A (a child) & Ors [2007] EWHC 1696 (Fam)

[2007] EWHC 1696 (Fam)Case No FD07P01051
IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION
Venue Royal Courts of Justice, Strand, London, WC2A 2LLDate 18/07/2007
Before
MR JUSTICE HOLMAN
Between
THE NHS TRUSTApplicantsA (a child)First Respondent(represented by an officer of the Children and Family CourtRespondentAdvisory & Support Service as child’s guardian)RespondentMrs A (child’s mother)Second RespondentMr A (child’s father)Third Respondent
Huw Lloyd (instructed by Weightmans) for applicantsMiss Melanie Carew (instructed by CAFCASS) for first respondent childPhilip Havers QC and Sydney Chawatama (instructed by Leigh Day and Co) for second and third respondent parents(counsel and solicitors instructed and acting pro bono)Hearing Hearing dates: 4th, 5th and 9th July 2007
Judgment

The issue

[1]A baby known as A is nearly 7 months old. Currently she is well (although taking controlling drugs) and lives happily at home in a loving, caring and devoted family. But it is medically certain that she suffers from haemophagocytic lymphohistiocytosis (HLH). She has already been very ill, and without treatment it is medically certain that she will die, and probable that she will die by about the age of one, or within another year or so from now at the very most. The only effective treatment is a bone marrow transplant (BMT). In the circumstances of this case, the doctors estimate that such a transplant has about a 50 per cent prospect of effecting a lasting cure so she then has a normal life expectancy. There is also about a 10 per cent prospect that she will die during and as a direct result of the treatment; a 30 per cent prospect that the treatment will not be successful and she will still die from her underlying HLH; and a 10 per cent prospect that although she survives she may have some significant impairment. The treatment will be lengthy, painful and distressing, and could be very painful indeed. A’s parents believe that she should enjoy the quality of such life as remains to her and not undergo the treatment. The doctors strongly disagree and have asked the court, in place of the parents, to give the necessary permission or consent for the treatment to take place.[2]There is an unusual feature to the case which I should make clear at the outset. Usually when contested medical issues of this kind arise, the child concerned is already in hospital and undergoing some treatment. The question is then whether a particular form of treatment should or should not be given or continued. In this case, as I have already said, baby A is currently at home and well. She would only arrive at the hospital for the BMT if her parents take her there and, in practice, their active participation and co-operation would be required before and during the treatment. There has been no suggestion whatsoever in this case that the court should positively order the parents to take her to the hospital for a BMT; still less that she should be removed from them for the purpose, under a care or similar order. So the parents do and will have the final control over whether A undergoes a BMT or not. But the parents are deeply law abiding people who clearly respect the authority of this court and, I hope, its objectivity and wisdom. And they have said that if I do grant the declaration which the hospital seek, then they will most probably feel that they should respect it and co-operate in the BMT taking place.[3]So the stark and awesome question for me is: should I approve and authorise this very significant invasive treatment which the doctors so strongly recommend; or respect and endorse the well informed and long considered judgment and decision of the loving parents? The issues are truly ones of life and death, but the case also raises profound issues of parental autonomy in our society. Publicity[4]These are proceedings to which CPR rule 39.2 applies. This provides that “The general rule is that a hearing is to be in public.” Rule 39.2(3) permits, however, that in certain circumstances a hearing or any part of it may be in private. At the outset of the hearing the applicant hospital and the parents both strongly urged me to hear this whole case and to give judgment in private. The parents desperately wish to avoid any publicity or intrusion into the lives of themselves and their family. The hospital wish to avoid any intrusion into their vital and sensitive work for this and other patients. I did decide to exercise my discretion to hear the evidence and argument in private. To do otherwise would, in my view, have been very unfair on the parents in particular, who are already suffering greatly from the illness of their child, who did not initiate these proceedings, and who have done nothing whatsoever to court any publicity into this intensely private matter. However, this remains a public court of justice, and when a court is called upon to make a decision of this gravity, which raises issues of legitimate public interest and fit for public debate, then I consider that it must announce its decision and reasoning – i.e. this judgment – publicly. The public are entitled to know what decisions courts take in this field, and why.[5]Anything which I say in this judgment may be freely reported, and indeed I propose to place this judgment on the Bailii website. However, I wish to stress that apart from this judgment the proceedings have taken place entirely before a court sitting in private and relate to the exercise of the inherent jurisdiction of the High Court with respect to minors. The restraints of section 12 of the Administration of Justice Act 1960 and all other relevant restraints apply. Further, it would be grossly irresponsible if any attempt were made to identify, photograph, contact or harass this child, her parents, siblings, family or friends. The representation[6]I have been privileged in this case to hear advocacy and argument of very high quality, for which I thank all the advocates. I wish particularly and publicly to thank Mr Philip Havers QC, his junior Mr Sydney Chawatama, and their instructing solicitors, Leigh Day and Company. All of them have acted entirely pro bono, which is a lawyers’ quaint way of saying entirely free of charge and in the public interest. Since the case lasted three full days in court (excluding today) and must also have required considerable preparatory work by both solicitors and counsel, the extent of their selfless generosity must be considerable. Realistically, they must all have devoted about a week of unpaid work to it. The parents have just sufficient means to be ineligible for legal aid, but could not possibly have financed legal representation themselves. The facts[7]In this account of the facts I am deliberately omitting certain details which might tend to identify the family, but I have them all very firmly in mind. I propose to refer to the past and prospective future treating doctors by letters (not their own initials). I will refer to the expert witnesses by their true names. None of them have been, are or will be involved in the treatment of the child nor work at the hospital concerned.[8]The parents are a happily married, well educated, professional couple with a very good understanding of what I will loosely call scientific matters. They each have considerable intelligence, and since the diagnosis of HLH they have read deeply about it and BMT as a treatment, and they clearly have a very good understanding of the medical issues involved. They have some elder children who are in good health and untouched by HLH. It is obvious that the parents are committed, devoted and excellent parents to all their children.[9]Baby A was born in December 2006 and at first appeared completely healthy and normal. In mid March 2007 she first became ill at home with symptoms of fever and jaundice. She was admitted first to a local hospital and rapidly transferred to more specialist hospitals. By the end of March she was in the hospital who now bring these proceedings and whenever I refer to “the hospital” it is to that hospital. It is a hospital of world standing in performing BMTs in children. By the beginning of April the clinical diagnosis that A suffers from primary or familial HLH had been made. It was positively and indisputably confirmed by the results of DNA tests in mid April. Familial HLH occurs in about 1 in 50,000 live births. It is a genetic defect in the immune system and has the effect that a viral infection triggers an abnormal and massive overproduction of the body’s scavenger cells (macrophages and histiocytes) which invade and literally eat into vital organs such as the liver, bone marrow and brain. When it first becomes “active” it may respond, as it finally did in the case of A, to very strong drug treatment, in particular with the drugs dexamethasone and etoposide and, initially, cyclosporine. But untreated, it is invariably fatal. The experts “state with certainty that without the significant medical therapy she has received to date, this child would already have died.” The disease is currently inactive or “in remission” (use of that phrase is not strictly accurate), but can become active again at any time. When it does become active again, then, if at all serious, the opportunity for a successful BMT will already almost certainly have passed. A BMT provides the only chance of a cure. Otherwise she must die.[10]Over a period of about 8 weeks from late March to late May 2007 A was very ill indeed and received prolonged, painful and damaging treatment. She very nearly died and spent about two weeks in the paediatric intensive care unit (PICU). One of the experts, Dr Wynn, commented during his oral evidence that “nothing prepares any family for the horror of a PICU.” A received a number of powerful drugs and reacted badly in particular to cyclosporine. Her skin became blistered; her bottom became severely burned by the chemotherapy; she developed electrolyte imbalance; she required continuous positive air pressure (CPAP); she developed fluid retention and became very puffy; she required an oscillator to blow air into her lungs; she had numerous punctures in many parts of her body from which blood had been withdrawn or into which drugs were injected. Most specifically, a Hickman line was inserted under general anaesthetic. This (of which I was shown an example) is a thin plastic tube which is inserted through the upper chest area into a vein and left indefinitely in the body so that blood can readily be withdrawn for testing or drugs infused. The sites of the Hickman line became severely infected and I have seen photographs, which are distressing, of several severely excoriated and infected areas on her upper right chest and the fold of her neck as a result. Eventually the line had to be removed. During much of this period A was in obvious pain and distress, evidenced by marked grunting and groaning. Of course, being a small baby, she could not articulate or describe her pain and distress and one cannot know her agony of mind or body. But her parents were undoubtedly deeply affected by the experience and the sight of their child undergoing so much suffering. One or other of them was at her side throughout. They do not want their child to have to undergo such an ordeal again. But the child did survive and, as I have said, is now currently well, her wounds repaired or repairing, and living a happy life as a 6 – 7 month old baby at home. I have seen with pleasure a short video of her as a happy, apparently healthy, and contented baby. Although the ordeal was very great for both A and her parents, I wish to stress that I have absolutely no reason to believe that the doctors and nursing staff did anything other than A’s condition required if she was to survive at all. The medical evidence[11]I have received written and oral evidence from three members of the treating team at the hospital: Dr X, a consultant paediatric haematologist, who was the lead clinician for A during her admission in March – May and would be a key member of the team if A does receive a BMT; Dr Y, who is the director of the blood and marrow transplant unit at the hospital and would be in overall charge of a transplant; and Miss Z, a highly specialist clinical nurse in the BMT team at the hospital who is involved in particular with the tissue typing and identifying an optimum donor.[12]I have received detailed written reports and evidence from four doctors instructed as “expert witnesses” in the case. I mention that the term expert witness does not mean that they are any more expert than the treating doctors; simply that they are not clinically involved with this child at all and have merely given “second opinions” for the purpose of this case. They are unconnected with A or the hospital and I can accordingly name them. I have detailed reports and also heard oral evidence from Dr Robert Wynn, who is a consultant paediatric haematologist and director of the paediatric BMT unit at the Manchester Royal Children’s Hospital. I have written evidence from Professor Sir Alan Craft, who is a consultant in paediatric oncology in Newcastle and who established bone marrow transplantation there (although he is not currently directly engaged in BMT work); Professor Ajay Vora, consultant paediatric haematologist and professor of paediatric haematology, and director of the paediatric BMT unit at Sheffield Children’s Hospital; and Dr Anthony Moriarty, a consultant anaesthetist and specialist in pain management in children at Birmingham Children’s Hospital. No party required any of these last three experts to give oral evidence, their reports being effectively agreed.[13]There is an agreed experts’ report by Dr Wynn, Professor Craft and Professor Vora following a joint meeting on 20th June 2007, with which Drs X and Y also entirely agree. They describe in detail the need for a BMT and the procedure, the success rate and the complications and risks. They say that a stem cell transplant is “unequivocally and categorically” medically in A’s best interests and that “The risk of death from the disease is absolute [i.e. certain] whilst the risks of transplant are relative and … far outweighed by the potential for cure it offers.” In answer to a question “Do you consider that there is sufficient research data and clinical experience on transplant treatment for HLH, in each of its forms, to make scientifically valid and universal predictions on survival rates for individual babies and, more notably, this specific child?” they say “Yes. BMT is the standard of care for such patients across the world in this situation. We know of no body of professional opinion who would dissent from this view.”[14]Before any transplant can take place a suitable donor must be identified. In this case a suitable matched family donor is not available and the doctors propose to transplant with cord blood and marrow taken from an unrelated placenta immediately after child birth. There are now considerable stocks of preserved cord blood around the world. In the case of cord blood, a full match is less critical than with adult blood because the cord cells have had no experience of life. Ideally a match of 6/6 antigens would give the best prospect of a cure, at around 70%. Currently the nearest match that has been found in a world wide search is 4/6. It is of course possible that any day a better match might become available; but on the basis of the evidence in particular of Dr Y and Miss Z I will proceed on an assumption that the best match available would be a cord with 4/6 antigens. The doctors have made clear that they would not proceed with any lesser match.[15]In the rest of this judgment I am accordingly assuming a proposed transplant with 4/6 matched antigens, unrelated cord donor blood and marrow. (In practice Dr Y proposes to use two matched cords but this does not affect any of the issues in the case.)[16]A BMT is a long process, stretching over 2 months or more. First, there must be a process of “conditioning.” The child must be kept in very strict isolation for 2 – 3 weeks, although up to three named family members may visit (and one can be resident at all times). During the conditioning period the child is given chemotherapy drugs which suppress the child’s own immune system, thereby creating space for the new bone marrow cells, when transplanted, to grow. This is a very invasive procedure with some inevitable side effects and a high risk of infertility.[17]The actual transplant itself is a relatively straight forward and risk free procedure. A small bag of the donor blood and marrow is transfused through an inserted central venous line, and I understand that the transfusion itself is relatively painless and only last about half an hour or less. But there is then a critical period of several weeks during which the child must remain on much medication and, if the transplant is successful, the donor bone marrow becomes engrafted in the patient in place of her own. During this period there is a risk of rejection, or a risk of graft versus host disease (rejection and gvhd are mutually exclusive), and the highest risk of infection.[18]In the whole process a difficult balance has to be made by doctors between the intensity of the drugs used, particularly in the conditioning period, the risks associated with them and the overall prospect of cure. At the risk of over simplification, the more powerful the drugs, the greater is the prospect of a successful transplant and cure; but the greater also are the pain and side effects during the process and the greater are the risks to the child during the actual process itself. Dr Y described how the hospital and his team are pioneers of reduced intensity transplant, and if a transplant does take place he would wish to have detailed discussion with the parents about the degree of intensity used. My understanding is that if only 4/6 matched donor cords are available he would prefer to use a higher intensity to maximise the prospect of a successful cure. But he would respect the wishes of the parents if they preferred a lower intensity, accepting the risk of a lower prospect of ultimate cure.[19]Dr X illustrated the overall risks and prospects of success as follows, assuming a 4/6 cord donor and a low intensity procedure. Assume 100 children all identical to A receive the identical procedure. 10 will die during and as a result of the procedure. In 30 of the remaining 90, the graft will be rejected. There is no cure and the 30 children will ultimately die of HLH (unless conceivably there is a second, successful transplant which is not even in prospect in this case at this stage). Of the remaining 60 children, about 10 may have significant neurological damage or other major and lasting problems or damage. That leaves 50, who may be expected to have a lasting cure, although there may be long term effects such as, particularly, infertility to which I will refer later.[20]There is no doubt that, in the words of Dr Y, a BMT is a significant process even if very light, and doctors cannot eliminate pain. Some of the predictable and almost inevitable consequences are vomiting, diarrhoea, hair loss and pain. Following the transplant there may be infection and sepsis, and acute toxicity to the liver, gut and lungs. Any of these will involve much pain, medical intervention and treatment. The patient may well develop mucositis, i.e a sore and ulcerated mouth.[21]The doctors do not deny the pain and unpleasantness of the whole procedure but do stress that it can be managed to at least a tolerable degree. The report of Dr Moriarty describes the use of analgesia and pain management for the different stages of the process and the complications which may arise, including mucositis which can be very painful indeed but which is controllable by a morphine pump.[22]If the engraftment is successful then A should be able to return home about 5 – 6 weeks after actual transplant. She would need to remain in semi isolation for about 6 months and not mix with large groups of people. But she could live reasonably normally within her home whilst she is weaned off preventative drugs. As A herself would still only be about a year to 18 months old, the period of semi isolation would not be significantly restrictive or onerous for her but clearly it would be restrictive for her parents and siblings. Risks[23]I have already made some reference to these. There is a list of nine potential risks or complications at paragraph 17 of the experts’ joint report, to which a tenth was added at the hearing. They are rejection of donor cells; graft versus host disease; infertility; infection; second cancers; growth failure; pubertal damage; hormone deficiencies; heart damage; and, the added tenth: neurological damage.[24]Obviously not all these risks are likely to eventuate in a given child and some (rejection and gvhd) are mutually exclusive. Some of the risks, for example infertility and infection, have a very high degree of probability. Some, such as second malignancy or cardiac damage, are rare. Some, such as growth failure and pubertal damage, are common or relatively common, but may be effectively managed if and when they occur with simple drug therapy. Growth failure is a “relative phenomenon.” The child (and later the adult) may be shorter than he or she otherwise might have been, but still within a normal range.[25]As already indicated, the degree of risk of any of these complications is affected by the intensity of the conditioning and treatment. Higher intensity reduces the risk of rejection but increases the risk of other complications or long term effects.[26]What is quite clear is that if a BMT is to be done at all, it is very important to do it while A remains currently well. Professor Sir Alan Craft said “She could have minimal complications and be reasonably well or she could be quite sick. In any individual it is unpredictable. What is predictable is that there are less chances of her becoming really sick if she is transplanted when she is well.” Dr Y said in his oral evidence that if the disease becomes active again it would reduce the survival and cure figures by 25 per cent and “we would not want to push for that”; although, as I understand it, he would consider a transplant even when the disease was active if, conversely, parents were strongly pushing for it. Death if no BMT[27]If a BMT is not done, A must inevitably die. It is not possible to predict exactly when, where or how. Dr X said that HLH is a very unpredictable disease and when it does become active again it is often much more severe. Every effort would be given to a palliative approach. She might die within days or within weeks of the disease becoming active again. Hopefully she would be enabled to die painlessly at home (as her parents would wish and prefer). One cannot ignore entirely, however, that even if a BMT is not performed, A may have to endure a period of some pain and distress in her terminal stages. The evidence and position of the parents[28]I have already described the parents in general terms and referred to their intelligence and their now very detailed grasp of the medical issues surrounding HLH and a BMT. They both gave oral evidence with dignity, courage, clarity and humanity. There are also two very detailed and thoughtful statements by the mother, with which the father has expressed his agreement.[29]Both parents have a reasoned, analytical and scientific approach to the medical advice and issues in the case. They are both also strong, committed and regularly practising Christians. They are careful in their evidence to recognise and separate out consideration of medical and scientific evidence or “fact” (as the mother put it) on the one hand, and consideration of their Christain faith and beliefs on the other. I do consider, however, that (perfectly understandably and appropriately) their final position and decision reflects elements of both.[30]In both her written statements and her oral evidence the mother described, painfully and graphically but I think without exaggeration, the course of A’s admission and treatment in March – May and the ordeal that A underwent. At all costs she does not want A to endure that again. She said “It is common to doctors to see such things [i.e. the pain and suffering] but I place a higher significance on what she went through. She is my child and I know her and I will not allow that [i.e. the ordeal] to be dismissed. If a BMT takes place the conditions are the same if not more so. There will still be the use of immuno suppressive drugs and the use of a Hickman line. The HLH itself may have been a contributory factor last time but predominantly it was these two things [the drugs and the Hickman Line] which sent her to PICU. My concern is that may happen again. What she went through last time is a huge factor.”[31]The mother said in her oral evidence that she does accept as a medical or scientific fact that if there is no transplant A will die and die relatively soon. However she had said at paragraph 96 of her first statement (bundle A, page C251) that “I am a Christian and both me and my husband have faith and hope that God can heal our daughter and our conviction is that He will heal her.” I emphasise the confidence in those words. In her oral evidence she said “We strongly believe that God has the ability to heal her. We hope fervently that He will do so. Our belief in a miracle gives us the ability to make decisions for her quality of life, even if short term.”[32]The father said “You can only believe. I don’t know whether He will do it or not. He may heal A.”[33]Both parents made quite clear that their faith in God is complementary to their trust in doctors. The father said “I do believe in doctors.” The mother said “I do believe that God works through the medical profession.” Both parents have sought medical help for A so far and have been fully co-operative with the doctors.[34]But the mother continued paragraph 96, quoted above, by saying “Putting our faith to one side we still think that the proposed treatment is too harsh for our daughter. On balance, we would rather take the quality of life she has right now, be it for weeks and months, rather than for her to endure years of continual treatment and prolonging her suffering.” (I interpose that the doctors would all say that “years of continual treatment” is a highly unlikely scenario. A BMT may itself prove fatal, or fail to provide a cure; or it may succeed. But on any scenario the outcome would be measured at worst in months, not years.)[35]Overall, the position of the parents is clearly affected by a very understandable fatalism or pessimism. Barring a miracle, not dependant on medical treatment, they have convinced themselves that A will either die during and as a result of the transplant process (one of Dr X’s 10 out of 100), or at most survive the transplant but reject the graft and not be cured and so still ultimately die (one of the 30 out of 100). The mother said “The problem is, I do not share the optimism … Our option guarantees her quality of life right now …. I don’t believe she will survive. We will lose her along the way.” She said “I could consider a BMT if the survival rates were higher or she had not gone through what she has done. … For my daughter it is much less than 50%, and she will die a horrible death. In the short term she has an excellent quality of life.”[36]The father echoed this evidence and said “I am so much concerned that if she had to go through it again she will not be able to live. She will die. I might agree if the percentages were higher … We would rather see her go through the process of death than go through the suffering of BMT and still die.”[37]Overall, the position of the parents can be summarised as follows. First, their daughter has already suffered greatly as they have witnessed. Second, their own expectation is that she will not be one of the 50 per cent who may be cured, but will die anyway. Third, and that being so, they wish to spare her further suffering and to prolong as long as possible the quality of life she currently has. Finally, but they stress it is a quite separate consideration, they have a faith that God will or may yet cure her. The guardian[38]The guardian commissioned some of the expert evidence. He has clearly carefully considered all the evidence both before, and that given orally during, the hearing. He has met the parents in their home and seen A and her elder siblings at home. He reports an impression of “a close and loving family with happy, bright and secure children.” At the date of his written report, 28th June 2007, the other evidence was not complete and the guardian was unclear as to the overall prospect of a cure with the donor matches available. His report is therefore to some extent inconclusive, and indeed ends with a question rather than a recommendation.[39]However, in his oral evidence, having heard all the other evidence, the guardian, acting on behalf of the child herself, said that he is “very, very strongly in favour of BMT treatment at the level of risk indicated – 50 per cent.” He said that as he had heard more evidence, so he had become more of the opinion that A should be given what chance there is. He said he would be in favour of going ahead even at 40 per cent because he is satisfied the alternative is that she will die. She should be given the chance of life rather than the certainty of death. The law[40]In March 2006 I gave a judgment in the case of An NHS Trust v MB (a child represented by Cafcass as guardian ad litem) [2006] EWHC 507 (Fam), [2006] 2 FLR 319. In that case the respective positions of the parents and doctors were the reverse of the present. The doctors wished to withdraw treatment (with the result that the child would rapidly die); the parents wished them to continue it. In my judgment in that case I endeavoured to summarise the relevant law in ten propositions at paragraph [16]. I do not believe that the propositions differ whether it is the doctors or the parents who wish to give or not give the treatment concerned (of course, no doctor can be compelled to carry out any treatment but that is not the issue here). All the advocates in the present case expressly agreed that my ten propositions were and are a correct and fair summary of the law, and I propose, therefore, to repeat them and direct myself by them. They are as follows:- i. As a dispute has arisen between the treating doctors and the parents, and one …. [party has] asked the court to make a decision, it is the role and duty of the court to do so and to exercise its own independent and objective judgment. ii. The right and power of the court to do so only arises because the patient, in this case because [she] is a child, lacks the capacity to make a decision for [herself]. iii. I am not deciding what decision I might make for myself if I was, hypothetically, in the situation of the patient; nor for a child of my own if in that situation; nor whether the respective decisions of the doctors on the one hand or the parents on the other are reasonable decisions. iv. The matter must be decided by the application of an objective approach or test. v. That test is the best interests of the patient. Best interests are used in the widest sense and include every kind of consideration capable of impacting on the decision. These include, non-exhaustively, medical, emotional, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations. vi. It is impossible to weigh such considerations mathematically, but the court must do the best it can to balance all the conflicting considerations in a particular case and see where the final balance of the best interests lies. vii. Considerable weight (Lord Donaldson of Lymington MR referred to “a very strong presumption”) must be attached to the prolongation of life because the individual human instinct and desire to survive is strong and must be presumed to be strong in the patient. But it is not absolute, nor necessarily decisive; and may be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering or other burdens of living are sufficiently great. viii. These considerations remain well expressed in the words as relatively long ago now as 1991 of Lord Donaldson of Lymington in Re J (A minor) (wardship: medical treatment) [1991] Fam 33 at page 46 where he said: “There is without doubt a very strong presumption in favour of a course of action which will prolong life, but … it is not irrebuttable … 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… We know that the instinct and desire for survival is very strong. We all believe in and assert the sanctity of human life …. 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 it increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child’s, and mankind’s desire to survive.” ix. All these cases are very fact specific, i.e. they depend entirely on the facts of the individual case. x. The views and opinions of both the doctors and the parents must be carefully considered. Where, as in this case, the parents spend a great deal of time with their child, their views may have particular value because they know the patient and how he reacts so well; although the court needs to be mindful that the views of any parents may, very understandably, be coloured by their own emotion or sentiment. It is important to stress that the reference is to the views and opinions of the parents. Their own wishes, however understandable in human terms, are wholly irrelevant to consideration of the objective best interests of the child save to the extent in any given case that they may illuminate the quality and value to the child of the child/parent relationship.[41]In the case of MB the father of the child was a practising Muslim and made reference to his beliefs, as recorded by me in paragraph [49]. I then said at paragraph [50]:
“This case concerns a child who must himself be incapable, by reason of his age, of any religious belief. An objective balancing of his own best interests cannot be affected by whether a parent happens to adhere to one particular belief, or another, or none. I have the utmost respect for the father’s religious faith and belief, and for the faith of Islam which he practises and professes. But I regard it as irrelevant to the decision which I have to take and I do not take it into account at all.”
In the present case all counsel, and specifically Mr Havers QC on behalf of the parents, accepted and agreed with the correctness of the approach in that paragraph, substituting in the present case the faith of Christianity for the faith of Islam.[42]Mr Havers stressed the first limb of the second sentence of proposition (x) above, and particularly emphasised some words of Waite LJ in Re T (Wardship: medical treatment) [1997] 1 FLR 502 where he said at 513 H – 514 B:- “All these cases depend on their own facts and render generalisations – tempting though they may be to the legal or social analyst – wholly out of place. It can only be said safely that there is a scale, at one end of which lies the clear case where parental opposition to medical intervention is prompted by scruple or dogma of a kind which is patently irreconcilable with principles of child health and welfare widely accepted by the generality of mankind; and that at the other end lie highly problematic cases where there is a genuine scope for a difference of view between parent and judge. In both situations it is the duty of the judge to allow the court’s own opinion to prevail in the perceived paramount interests of the child concerned, but in cases at the latter end of the scale, there must be a likelihood (though never of course a certainty) that the greater the scope for genuine debate between one view and another the stronger will be the inclination of the court to be influenced by a reflection that in the last analysis the best interests of every child include an expectation that difficult decisions affecting the length and quality of life will be taken for it by the parent to whom its care has been entrusted by nature.”[43]On behalf of the hospital, Mr Huw Lloyd emphasised a number of key factual differences between the present case and Re T, and stressed, rather, some words of Sir Thomas Bingham MR in Re Z (A minor) (Identification: restrictions of publication) [1997] Fam 1, at 32 – 33 where he said:
“I would for my part accept without reservation that the decision of a devoted and responsible parent should be treated with respect. It should certainly not be disregarded or lightly set aside. But the role of the court is to exercise an independent and objective judgment. If that judgment is in accord with that of the devoted and responsible parent, well and good. If it is not, then it is the duty of the court, after giving due weight to the view of the devoted and responsible parent, to give effect to its own judgment. That is what it is there for. Its judgment may of course be wrong. So may that of the parent. But once the jurisdiction of the court is invoked its clear duty is to reach and express the best judgment it can.”
[44]I mention finally that Mr Havers said expressly that he does not suggest that specific consideration needs to be given to the European Convention on Human Rights. Clearly, several Articles of the Convention are engaged by a case such as this. However the Convention and the passing of the Human Rights Act 1998 does not alter or add to established principles of English domestic law in this field, and no separate consideration of, or reference to, the Convention is required. Infertility[45]I propose next to refer discretely to the issue of infertility. If there is a BMT, there is a very high risk that the effect of the chemotherapy in the conditioning process would render A infertile. Dr Y said that if his preferred dosages are used, with an unrelated 4/6 matched cord donor, to give in his opinion the most optimum outcome, then there would be a 95 per cent risk of infertility. In those circumstances I consider that I should approach this case on the basis that if there is a BMT it would definitely render A infertile, but with the tantalising, agonising and very remote possibility that it had not done so. Her own eggs, already present in her ovaries at birth, would be irrecoverably damaged and she would not be able to conceive her own genetic child, whether naturally or with assistance outside the womb (i.e. as a “test tube” baby). She would, however, be able naturally to carry and give birth to an implanted donor foetus, not genetically her own.[46]This is a factor to which the parents, in particular perhaps the mother, attach considerable weight. The mother referred to it in paragraphs 11 and 12 of her supplementary statement, now at bundle A, page C 267(4). I have every aspect of the whole paragraphs very firmly in mind, but will only quote selectively from them. She said:
“Also of considerable concern is the risk of hormonal imbalance and, even worse, infertility in A …. The weight of this burden of uncertainty cannot begin to be appreciated for [our family] … Part of the expected benefit and privilege of being a woman which A, by God’s grace, will become, is derived from the ability to bear children. Imposing such an uncertain risk means that A and this family will face years of uncertainty. I have knowledge of sterility being caused due to medical intervention and I am not entirely sure that in the future A would appreciate enduring these consequences of the treatment provided.”
In the course of her oral evidence the mother said “Infertility is incredibly sad. It is something that if you can avoid you should avoid.” She further developed why it is a factor of such importance to her and this family. As Mr Havers commented during his closing submissions, it was when discussing infertility that the mother became overtly tearful and distressed.[47]Mr Havers submitted, logically correctly, that the risk or certainty of infertility should properly be considered as one of the many factors in the case when performing an overall balance as to where the best interests of A lie. He said it is the most striking long term risk, but nevertheless there are varying degrees of risk of a number of long term complications of which infertility is a part and they all need to be considered as a whole. That is correct. Nevertheless, I am deliberately giving discrete consideration to infertility for a number of reasons. First, it is a factor of considerable importance to the parents. Second, I myself feel I must approach it as a certain consequence, not a risk. Third, although the damage would be done now, at the time of the BMT process, its actual consequence would take effect many years later when A became of child bearing age and desired to have a child.[48]I am deeply conscious that I am male and, as it happens, do not have close personal experience of infertility. I am aware of the very great pain and despair it may cause to many infertile women. I do not know, but there may indeed be women who find their infertility so unbearable that they literally feel they would rather be dead. I have tried to consider this aspect of the case with as much appreciation and understanding as I can of all that the mother has said, of her reasons, and of the moving affect with which she said it.[49]If A does undergo a BMT but, very sadly, still dies as a direct result of the BMT, or from HLH because the BMT has not been successful, then the fact that meantime her eggs have been damaged is, frankly, irrelevant. The issue of infertility or the risk and uncertainty of infertility really only arises on the hoped for hypothesis or assumption that she survives and is cured of HLH and is able to live a normal childhood and on into adulthood.[50]There are then two aspects to the mother’s concern. The first is the actual fact, assuming it occurs, of infertility and of A being unable to bear her own child. I have tried to appreciate how great a burden this would or might be to A as a young adult, longing to have “the benefit and privilege of being a woman” (the mother’s phrase) and yet being unable to do so. And yet, on the above hypothesis and assumption, the alternative is death, and no human life at all beyond the age of about, say, one. Whilst, as I have recognised, a minority of infertile women may actually feel and believe that they would prefer actually to be dead, I do not believe this would be a majority feeling. If it is otherwise in the best interests of A to undergo a BMT I do not consider that even the certainty of infertility can weigh at all against having a BMT. I cannot accept on her behalf that if (it may be a big if) she can be cured and otherwise lead a long, full and normal life, the certainty of infertility can outweigh or even impact upon the decision. Put crudely, I must, on A’s behalf, conclude that it is better to be alive and infertile than dead; and I can only hope and assume that if she does have a BMT, does live into adulthood and does later read these words, she will agree with me, despite the closing words of her mother in the passage from her statement quoted above (“… I am not entirely sure that in the future A would appreciate enduring these consequences of the treatment provided.”)[51]The second, and distinct, aspect of the mother’s concern, as also indicated by the passage from her statement, is the agony of uncertainty. She said “Imposing such an uncertain risk means that A and this family will face years of uncertainty.” I have assumed the certainty of infertility, but the remote possibility of fertility remains. Again, I do understand that the element of uncertainty may be agonising for A. As a burden, it may arise sooner, for she may learn from a relatively young age that she is probably infertile but possibly may not be. This uncertainty may hang like a dark cloud over her childhood and youth. Her parents and family would have to strive to help her accept it. But as with the fact of infertility itself, I cannot and do not accept that this burden of uncertainty can weigh at all against a BMT if otherwise in her best interests.[52]Before turning from infertility, I mention that the possibility of extracting and storing some of A’s eggs before a BMT was very briefly touched upon in the oral evidence. I understand that at her age and with the current science that it not a practical possibility, but further advice could no doubt be sought if a BMT does go ahead. Discussion[53]Mr Havers appropriately commented that the doctors at the hospital, and those experts who are or have been specialist in BMT (Dr Wynn and Professors Craft and Vora) are all, by the very nature of their work and vocation in this field, committed to BMT as a treatment. They focus on the prospect of cure, and may minimise the pain and suffering and significance (if not the degree of risk) of complications. He stressed, too, the still very small or “fragile” statistical basis for predicting outcome. Dr Y is an expert of world standing in BMT, yet he has only performed 40 transplants in 39 children with HLH (one child had a second transplant). Most of these have been transplants from closely matched related donors. The number of transplants into HLH children from unrelated cord donors is very small indeed. Dr Wynn, at his hospital, has so far undertaken only one transplant from an unrelated cord donor (with a 5/6 match) into a child with HLH. So Mr Havers submits that “the numbers involved are tiny, it is still an experimental procedure, and there is not a sure basis of experience for the doctors’ 50 per cent degree of optimism.” Further, he made the point that the use in ordinary language of 50 per cent, or “fifty fifty”, is itself “wholly uncertain”.[54]The doctors of course accept the small numbers (it was they who gave us the figures), but Dr Y justifiably pointed out that of the 39 HLH children to whom he has given a transplant, 27 (or nearly 70%) are alive and well and free from the disease. The techniques continue to improve, and of those 39 he transplanted 19 within the last 5 years. Of those 19, 16 (or nearly 85%) are alive and free from the disease. Further, both he and Dr Wynn stressed that although the absolute numbers of transplants into children suffering HLH are small, many more BMTs have been done by themselves and others into children suffering a range of different, other diseases. Broadly speaking, the medical science and techniques are the same.[55]I accept the force of all these points that Mr Havers made and I am deeply conscious from other areas of law (e.g. the diagnosis of non accidental injury in children) of the fallibility, if I may respectfully say so, of medical science. But I do believe that in the present case there is a consistent body of informed evidence from doctors and experts of competence, integrity and great expertise and repute. The procedure of BMT in HLH patients may still be pioneering and evolving, but even in such patients it is certainly not so experimental as to be treating A as a proverbial “guinea pig”. In an answer which I have already quoted, the joint experts’ report describes BMT as “the standard of care for such patients across the world in this situation.” Clearly a prognosis of fifty: fifty has considerable elasticity, but it still conveys that out of 100 patients, around 50 will survive and will be cured. It must be recalled that in any event a balance would still have to be performed, and decision made, between intensity and outcome.[56]On all the medical issues in this case I must, and do, accept the evidence of the doctors.[57]I have already described the qualities of the parents and their informed, reasoned and balanced approach to the issues in this case. I make clear that in my view the decision they have reached is an eminently reasonable as well as well-reasoned decision. This is not at all a case where, in the words of Waite LJ quoted above, they are “prompted by scruple or dogma …”; rather, this case is at the other end of Waite LJ’s scale, and there is “genuine scope for a difference of view.” The consideration does weigh heavily upon me that the best interests of this child include an expectation that difficult decisions will be taken for her by the excellent and reasonable parents to whom her care has been entrusted by nature. But ultimately the issue is not whether the parents or their decision are reasonable, as Waite LJ himself, and Sir Thomas Bingham MR in the passages quoted above, and proposition (iii) above all make clear.[58]On behalf of the guardian, Miss Melanie Carew helpfully prepared a detailed “balance sheet” of the benefits and burdens or advantages and disadvantages of the proposed treatment, which was supplemented by a supplementary document prepared at the end of the evidence by Mr Chawatama. I have very carefully studied and considered the detail in these documents but I do not, in this particular case, reproduce them.[59]In this particular case, although there has been some painstaking detail in the evidence, some of which I have tried to reflect in my account of the facts and the evidence, I feel that a broader approach to the balancing exercise and outcome is both appropriate and justifiable.[60]As Lord Donaldson of Lymington MR once said, it is impossible to weigh all the considerations mathematically. An adult facing a terminal illness may be able in some way to assess the value he places on the continuation of his own life, and weigh against that consideration of pain and suffering and all other relevant considerations. Every day, patients are having to do just that. But it is extraordinarily difficult to assess what value to place on life on a baby’s behalf. That may be particularly so when, as in the case of baby MB, what was under consideration could be no more than prolongation of life for a relatively short period. Benefits[61]Here, however, the potential benefit to A if a BMT is successful is not merely prolongation of life by a few months or even years, but the prospect of a full, whole life into adulthood with a normal life expectancy. As Dr Wynn said, it is important to have an image in mind of the child after a successful transplant. If the transplant is successful, he or she will be “normal”, rarely need any treatment or follow up visits to hospital, do all normal age appropriate activities, and grow into “normal” adulthood. Very understandably, parents in the position of these parents may focus on the baby in the cot now, and the unbearable prospect of subjecting her to further suffering, and the very real prospect (the other 50 per cent) of an earlier and medically induced death or grave impairment. It is necessary, however, also to look beyond.[62]In short, the potential benefit to A is the 50 per cent prospect of a full life itself. Mr Chawatama’s list ended “Benefits of BMT: wholly uncertain.” With respect to him, that may fairly reflect the element of unpredictability; but it fails completely to attach the immeasurable benefit of human life itself. The disadvantages or burdens[63]These are undoubtedly considerable, but many of them are no more predictable or certain.[64]Foremost must be the certainty of some, and possibly considerable, pain and suffering. That is what the parents so strongly fear on behalf of their child. However, children do stoically endure it. It may to a considerable degree be managed: see the evidence in particular of Dr Moriarty. So far, A has suffered, and the parents have witnessed, the ordeal of treatment for active HLH. Dr Wynn stressed that while the overall account, as revealed by the medical records and the detailed description by the mother, of A’s period in hospital in March – May (and particularly her time in the PICU) is “typical of HLH”, it is not typical of the transplant procedure, although it could, atypically, be repeated.[65]Next, there is the statistical possibility that A may actually die from, and her death be accelerated by, the procedure itself. On the evidence, there is about a 10 per cent possibility of that, and it weighs very heavily with me. Few people would readily or lightly embark on a course which had a 1 in 10 risk of killing them.[66]Third, there is the 30 per cent possibility that it would all be in vain. No cure is effected. A would still die of HLH, and such life as she is destined to have would have been considerably impaired by the ultimately futile period of pain and suffering and hospitalisation away from her warm and loving home.[67]Finally, there is the range of attendant risks (quite apart from infertility) which I have already described. They are real, they are unpredictable and some of them are grave and certainly involve increased pain and suffering. A miracle[68]I have already described (and Mr Havers has accepted) the legal approach to faith. The presence or absence of religious faith and belief in either the parents or indeed myself are irrelevant. I must decide this case on the basis of medical knowledge and experience, the evidence, and reason. By definition, a miracle defies medical science and all known experience and reason. Whilst I respect the faith of the parents, I must leave entirely out of account any possibility of a miraculous cure. Outcome[69]My mind has wavered during the course of the hearing. I have been deeply impressed by the parents.

(x) above:

“Where, as in this case, the parents spend a great deal of time with their child, their views may have particular value because they know the patient and how [she] reacts so well …”
They are in intimate and constant contact with A. They witnessed her suffering during the ordeal. They know her happiness and contentment at home now. But by the end of the hearing, and in agreement with the guardian, I have become convinced that it is in the overall best interests of A to undergo a BMT and that I should, as I will, grant the requested declaration. It will be in the terms which have been agreed as a matter of drafting by all counsel and are annexed to this judgment.[70]If a BMT could only prolong by a relatively short period her life; or if it would leave her alive but probably seriously impaired (e.g. significantly brain damaged) then I would or might take a different view. But in my view a 50 per cent prospect of a full, normal life (even though infertile) when set against the certainty of death before the age of one or one and a half, does in this case outweigh all other considerations and disadvantages. If the opportunity of a BMT is not taken, a very real prospect of a full life, weighed against certain death, will have been lost for a few more months of babyhood. A is more than merely a baby. She is a living human being, with a future as well as a present, to whom, despite her disease, modern medicine and science may be able to give a full life. In a case which includes a strong reference to God and religion, I am deeply conscious of my fallibility. But I am convinced that A should be given that opportunity. I hope that the parents will feel able to accept my judgment. Whatever her future and outcome, A and her family will remain deeply in my thoughts. Operative part of order

IT IS DECLARED THAT:

[1]It shall be lawful notwithstanding the parents’ refusal to consent and the court finding it is in the First Respondent’s best interests for the Applicant and/or the doctors having responsibility for the First Respondent’s care to carry out a bone marrow transplant procedure and any necessary prior treatment and investigations for her condition of Haemophagocytic Lymphohistiocytosis such procedure to be carried out(a) following certification by two members of the Multi Disciplinary Team that in all the circumstances prevailing immediately prior to commencing treatment: (i) the First Respondent’s disease demonstrates no more than mild manifestations of her disease; and (ii) the proposed treatment has approximately a 50% prospect of effecting a cure(b) with the use of either an unrelated adult donor matched to no less than 9/10 antigens or unrelated cord blood donors matched to no less than 4/6 antigens.[2]In the event of transplant failure or life threatening complications following transplant the doctors having responsibility for the First Respondent’s care may treat her in accordance with her parents’ wishes.[3]The doctors and nurses having responsibility for the First Respondent’s care and treatment shall at all times administer treatment in such a way as to cause her the least distress and pain and retain the greatest dignity.

Cited in 4 later judgments