OT (A Child), Re

This is the judgment of both members of the court.

On Friday 20 March 2009, between 4:25pm and 8:05pm, we conducted a hearing of an application by parents to appeal from orders made by Mrs Justice Parker on the previous day in profoundly tragic circumstances surrounding a baby, whom she described as OT and who was born on 29 May 2008 and was thus then aged ten months. It was a high-profile case, conducted by the judge largely in open court; and its tragic nature had touched the heart of the public. The NHS Trust, at whose hospital OT had been cared for since June 2008, contended that OT’s death was inevitable and that any prolongation of the various interventions which the hospital had put in place in the hope not just of keeping him alive but of improving his condition had not only proved unsuccessful but had caused him gratuitous pain (by which we mean pain without countervailing benefit) and that the time had come for the hospital to be permitted to discontinue its interventions notwithstanding that the result would be OT’s immediate death. The parents vehemently opposed the application and, in that regard, they had the good fortune to secure representation on a publicly funded basis by able and energetic solicitors, namely Messrs Kaim Todner, and by equally able and energetic counsel, namely Mr Nicholas Bowen, now Mr Nicholas Bowen QC. OT was himself of course also a defendant – indeed the first defendant – to the hospital’s application and he appeared by Ms Vivian, an officer at CAFCASS LEGAL, as his guardian ad litem. She supported the hospital’s application.

As we will explain, the judge acceded to part of the application on the first day of the hearing but it was only in her substantive judgment on the tenth and final day of it, namely 19 March 2009, that she also acceded to the second part of it, which was the part likely to lead to OT’s immediate death.

It was in such circumstances that we arranged to consider the parents’ application for permission to appeal, on notice to the hospital and to the guardian, at the hearing to which we have referred. Because of the urgency, we announced our decision, namely to refuse permission, at the end of that hearing but, not least because of the lateness of the hour, we indicated that we would give our reasons in writing later, which we now do.

Our announcement that the forensic proceedings were thus finally concluded enabled the hospital to implement the judge’s order. Although of course we expected such news, it profoundly saddened both of us to read in the press on Sunday 22 March 2009, and later to be told formally by the parents’ solicitors, that OT had died during the morning of Saturday 21 March.

The finding of the judge, on unanimous medical evidence, was that the condition from which OT suffered was a mitochondrial condition of genetic origin. A mitochondrion is a structure within the cells of the body which is supposed to generate the energy necessary to the functioning of the body. It is most rare to find, as was the case in OT, that the mitochondria fail to do their job properly. The result for OT was a breakdown in the functioning of many areas of his body. From the time of his admission to the hospital in June 2008 he was entirely dependent upon a ventilator. But the ventilation did not save him from suffering brain stem damage; from a stroke which led to the death of an area of his brain; from inflammation leading to calcification of his brain; and from fits and abnormal movements. It was the permanent shutting down of an area of his brain which probably caused him to be unable spontaneously to breathe. As well as supplying respiratory support through a ventilator, the hospital performed a tracheostomy and therefore, in order to keep the enlarged opening in place, they introduced an endotracheal tube. In and prior to December 2008 four attempts were made to extubate OT but they had quickly to be abandoned in the light of his clear inability to breathe sufficiently without assistance.

OT’s condition required drugs to be infused into his bloodstream. By October 2008 the scarring of his veins was making conventional infusion very difficult and thus a central Hickman cannula was inserted beneath the skin into a vein as the conduit for the administration of the drugs.

The damage to his brain disabled OT from sucking or swallowing and required him to be fed by naso-gastric tube. The inability to swallow presented one of the most profound difficulties for him. For it disabled him from swallowing the natural secretions of his mouth and they tended to sink down into his lungs. So his secretions needed to be cleared; and this required suctioning to be applied to his mouth, to the passage from the back of his nose into his airway and, through the tracheostomy, to his trachea. The need for suctioning became much more frequent in about January 2009; and there was graphic evidence before the judge, albeit by no means entirely accepted by the parents, that the procedure caused not just discomfort but great pain to OT.

The unanimous evidence before the judge was that OT was likely to suffer further strokes, which would permanently destroy other areas of his brain, and that it was highly likely that, whatever procedures were undertaken, however active and interventionist their nature, he would probably die prior to reaching the age of three and certainly die prior to reaching the age of five.

By about September 2008 conflicts were emerging between the hospital and the parents as to the nature of the interventions and treatments most in OT’s interest. Between November 2008 and February 2009 the hospital, an acknowledged centre of excellence though it is, obtained second opinions from three doctors with different specialisms attached to other hospitals; and supplied copies of all of them to the parents. All three doctors agreed with the hospital that long-term paediatric care was not in OT’s best interests. The hospital also invited the parents to take second opinions for themselves and it suggested possible experts in that regard and indeed firms of solicitors who might be able to carry forward the parents’ contentions within a legal framework. Although the parents made contact with at least one doctor, at the Portland Hospital, apparently he made no actual report. Ultimately, however, on 29 January 2009, the parents consulted their solicitors.

On 29 January 2009 the hospital made a surprising proposal. It was that OT should be moved out of the Intensive Care Unit to a different ward and that he and the parents should be prepared for him to move home on the following basis: first, that the hospital would arrange for home ventilation; second, that, in the event of his suffering ongoing seizures, anti-convulsants would be administered and he would be kept comfortable, with drugs to limit secretions and with antibiotic therapy; but, third, that no further, active interventions would be offered, in particular no cardiopulmonary resuscitation nor escalation of ventilator therapy, and there would be no readmission to the Intensive Care Unit. The parents rejected the proposal principally because of the third of the terms, although at the hearing before the judge they began to show interest in it. Even if, however, the proposal had ever really been viable, by that stage it had become no longer viable by reason of OT’s deteriorating condition.

Although the hospital’s solicitors had, at any rate since January 2009, been drafting witness statements, causing them to be signed and preparing for an application to the court for directions in relation to the intensifying issue with the parents, no proceedings began until an application was made on an urgent basis to Holman J on Thursday 5 March 2009 that he should hear evidence with a view to sanctioning withdrawal of OT’s ventilation there and then. The application was made on extremely short notice to the parents, notwithstanding, of course, that they already had solicitors who had become acquainted with the looming problems. A Hickman line is prone to infection and on 4 March it was thought that it was the source of a sudden infection in OT which was making him ill and, by the following day, acutely ill. Pending determination of its application to the court, the hospital put OT on a high-frequency ventilator at high pressure. Unsurprisingly Holman J refused to hear evidence or to make any order in the light of the extreme shortness of the notice to the parents and of the absence, at that stage, of any representation of OT himself. He directed that the application be listed before another judge on Friday 6 March.

Thus it was that the hearing before Parker J began on 6 March 2009. Accepting the hospital’s assertion of the grave urgency of the matter in the light of OT’s continuing deterioration, she refused the application on behalf of the parents to adjourn the hearing and, at the end of a full day’s hearing, granted part of the hospital’s application. Ignoring, for this purpose, what seems to us (although we did not hear argument about it) to have been an infelicity in the language of her order dated 6 March, which was eliminated when it was substantially reaffirmed in her final order, the order was to the effect that, notwithstanding any refusal to consent on the part of the parents, it would be lawful for the hospital, were it to consider such to be in OT’s best interests, not to resuscitate him in the event that he were to suffer a cardiac or respiratory arrest, not to provide haemofiltration for renal failure, not to escalate ventilator therapy, not to administer inotropes in the event of a cardiovascular collapse and not to replace the central venous line.

In the event, over the weekend 7/8 March 2009, OT’s condition stabilised. On Monday 9 March the judge continued the hearing but did not sit during the afternoon in order to enable the parents to consult Dr Vince, a consultant paediatric intensivist attached to Guy’s Hospital, by whom the judge had already authorised the parents to adduce a report. The parents duly saw Dr Vince that afternoon; and after court on the following day Mr Bowen held a conference with her. The result was, however, that, at the hearing on Wednesday 11 March, Mr Bowen told the court that he would not be adducing a report from Dr Vince. Although there was some discussion as to whether Mr Bowen should nevertheless be obliged to put before the court Dr Vince’s appraisal both of OT’s situation and of the hospital’s proposals in respect of further treatment, the judge was never actually invited to make a direction to that effect.

The hearing proceeded on Thursday 12 March 2009 and, on Friday 13 March, at around the time of the conclusion of the evidence on behalf of the hospital, Mr Bowen indicated to the judge that he might be applying for an adjournment of up to one month in order to seek to collect evidence from other specialists. The judge’s comment was that, at the very least, he would have, at a stage early in the following week, to identify the experts proposed to be consulted if he was to have any chance at all of securing an adjournment.

The judge’s comment, however, was made upon the basis that OT’s condition had improved during that week ending on Friday 13 March 2009. Unfortunately, over the following weekend, his condition again deteriorated. On Monday 16 March the judge, who had committed herself to preside over a conference in Oxford that day, was unable to continue the hearing. But, in the light of OT’s deterioration, Mr Bowen made an application by telephone to her in Oxford, by which he sought variation of the order dated 6 March which had in effect authorised the hospital not to escalate treatment in the event of a crisis. The details of the suggested variation are irrelevant. The judge refused the application.

Although on Monday 16 March 2009 the hospital had forecast that there was a 60 – 70% chance of OT’s death that day, his condition stabilised; and it remained stable, without improvement or deterioration, between Tuesday 17 March and Thursday 19 March, when it again deteriorated, possibly reflective of a further small stroke.

At the conclusion of the evidence on the tenth and final day of the hearing, namely on Thursday 19 March 2009, Mr Bowen made another application for an adjournment, whether indefinitely or at least for seven days; but he seems to have given little indication to the judge that actual steps had been taken to locate relevant experts. The judge refused the adjournment. That afternoon she orally delivered her long, substantive judgment, apparently quite fast; and, understandably, it had not been able to be transcribed by the time of the hearing before ourselves 24 hours later. We were supplied, however, with a good note of the judgment made by Ms Bhogal, solicitor for the hospital, which, under great pressure of time, Mr Bowen had valiantly sought to amend and supplement by reference to his own and his solicitor’s notes. Following the hearing before ourselves we were supplied with the approved transcript of the judge’s judgment, which runs for 171 paragraphs across 45 pages. In the preparation of this judgment we have, of course, worked from the approved transcript which, unsurprisingly, is in more digestible form than the notes from which we worked at the hearing.

In her judgment the judge said:

“The evidence of all the treating doctors and the experts was unanimous. OT’s condition is serious and progressive and his decline is inevitable. Future treatment is futile and will only escalate his suffering. The evidence is that OT has minimal consciousness, is mostly asleep but retains awareness of pain. Suctioning causes him extreme discomfort and probably pain. Escalating medical treatment will not give him any benefit.”

The judge accepted the opinion of one of the outside experts consulted by the hospital, namely a consultant paediatric neurologist, to the effect that OT was cortically blind in that, although his eyes were unimpaired, his brain could not make sense of what he saw. Notwithstanding challenge on the part of the parents, the judge found that OT’s brain damage was irreversible and that a symptom of the death of his brain cells was the absence of growth of his head. She noted the agreed fact that OT was unable to breathe without external assistance and she highlighted the problems attendant upon the need to suction secretions out of his mouth, nose and throat. She accepted that the need for suctioning had become extremely frequent and she rejected the father’s evidence that the process was otherwise than profoundly distressing to OT. She accepted the evidence that OT had a very limited link with the outside world; that he was never awake for more than about half an hour; and that, even when awake, his state was little more than one of semi-consciousness. Although the order dated 6 March 2009 would, so it seems to us, have justified it in not intensifying ventilation upon OT’s deterioration over the weekend of 14/15 March, the hospital had, no doubt in the light among other things of the ongoing proceedings, chosen to intensify it, albeit it with grave concern that the necessary increase in ventilation pressure was causing him extreme distress and raising a real spectre of damage to his lungs. The judge recognised that, however long OT’s life, it could never be sustained otherwise than by artificial ventilation; that such raised the risk of complications, including of further strokes leading to further brain damage; that there was a substantial risk of further infections and, over all, of multiple organ failure. All these likely developments, according to the judge, were likely to lead to a vicious circle in which even more invasive treatment would precipitate even more profound crises.

Thus it was that, by the order dated Thursday 19 March 2009, the judge reiterated the substance of the order which she had made on 6 March and added to it the further order, stark in its likely immediate effects, that, notwithstanding the refusal of the parents to consent, it would be lawful, as being in OT’s best interests, for the hospital, were it to see fit to do so, to withdraw and withhold ventilatory support from him and to move to a regime of palliative care in order to lessen his discomfort, and respect his dignity, during the no doubt extremely brief period of his life thereafter.

The above summary of the judge’s reasoning, however, does no justice to significant parts of her judgment. We refer to her profoundly sensitive and empathetic treatment of the desperate plight of the parents; of their profound love for OT; of the bona fides of their challenge, however misguided, to the judgements of the hospital; and of the anguish which had overcast their participation in the proceedings. It is clear that, ever since his admission to the hospital, the parents had exhibited a wonderful level of commitment to him; had frequently sought to hold and cuddle him; and had sung to him and tried to talk to him. The judge placed the father’s occasionally intimidating, challenging and abusive conduct towards hospital staff into the context of a level of distress on his part which it was hard to put into words. Following her prolonged attention to the evidence, including to the father’s evidence and to the attempted dissection of the evidence of the hospital and of the external experts on the part of Mr Bowen, the judge entirely – and, so far as we can see, correctly – rejected the many complaints of the parents about the way in which the hospital had treated OT during the previous nine months. Again, however, the judge withheld criticism of the groundlessness of the father’s complaints in the light of the terrible situation in which he and the mother had found themselves.

Although nominally the parents pressed upon us two grounds for their proposed appeal, the grounds were linked and were in effect founded upon the same point, namely that there had been a serious procedural flaw in the judge’s conduct of the hearing, such as had indeed infringed OT’s right to respect for his personal and family life under Article 8 of the European Convention on Human Rights. The submission to this court was that the judge should have acceded to the application made by Mr Bowen for an adjournment of the hearing. The application had been made first on the first day of the hearing before her, namely Friday 6 March 2009; it had been ventilated on succeeding days and finally it had again been fully pressed at the conclusion of the evidence on the final day of the hearing, namely Thursday 19 March, when the judge had refused it, for reasons to be included in her substantive judgment, and had invited counsel to proceed to make their final substantive submissions. The argument to us was that, notwithstanding that a judge’s refusal to adjourn is a discretionary decision against which an appeal is always problematical, it had been outside the realms of the judge’s discretion to have refused to adjourn the hearing in circumstances in which, by the rushed history of the litigation, the parents had been given no proper opportunity to consider the hospital’s case or to collect evidence which might have cast an entirely different light upon its evidence and thus upon the optimum future medical treatment of OT. Although the parents strongly objected to the order in relation to resuscitation, first made on 6 March and reaffirmed on 19 March, the principal target of the proposed appeal was the order in relation to continued ventilation which the judge had declined to make at any early stage but had ultimately made on 19 March. That order was (submitted Mr Bowen) not only wrong in that it was the product of procedural irregularity but also unnecessary: even in its absence, the hospital retained its fundamental entitlement to refuse to treat OT contrary to its professional conviction and it would (so the argument ran) be far preferable for the judge to have left the hospital in that by no means unusual situation.

Mr Bowen articulated grave criticisms of the hospital’s delay in taking legal proceedings until after the deterioration in OT’s condition on Wednesday 4 March 2009, following which its forensic steps had had to be taken in an emergency, swiftly and with no adequate regard for the need to afford the parents an opportunity to respond to the evidence with the aid of expertise from other quarters. By December 2008, argued Mr Bowen, it was plain to the hospital that its views about the future treatment of OT had collided with, or would collide with, those of the parents. Mr Bowen referred us to hospital notes dated 9 January 2009 in which the father had apparently made clear to it that the parents did not agree to any withdrawal from OT of artificial ventilation and in which it had recorded that he was awaiting its application to the court. Why (asked Mr Bowen) was no application then made? An application made some eight weeks prior to OT’s serious deterioration on 4 March might (he submitted) have made all the difference to the ability of the parents to assemble a convincing responsive case. At some early stage of the hearing (so he told us) no less than 15 lever arch files of “Carevue” records, namely computerised records charting OT’s condition for in effect every minute of the month of January 2009, had, whether on the application of the parents or otherwise, been disclosed to them. But in those circumstances (said Mr Bowen) there had been entirely insufficient time to digest their significance, even though provisional perusal indicated that the periods of peace and comfort for OT had been significantly longer than the hospital’s evidence had suggested. Mr Bowen disputed that, at any rate when finally making his application for an adjournment on Thursday 19 March, he had failed to particularise the avenues which, were an adjournment granted, the parents would wish to explore; but he submitted that, insofar as there had been any deficit in that regard, the blame should be placed squarely upon his shoulders and should not prejudice something as fundamental as OT’s chance of being exposed, by further evidence, to be a child whose life did not deserve to be cut short.

As before the judge, so before us: Mr Bowen relied upon two authorities in support of his protest at the lateness of the hospital’s approach to the court. He relied first on Glass v. UK (2004) 39 EHRR 15, a decision of the European Court of Human Rights. A boy aged 12 was severely mentally and physically disabled, had suffered numerous complications and faced the prospect of early death. At a time when he was not yet in crisis, namely in September 1998, the hospital and his mother had disagreed as to whether, in the event of a crisis, he should, as the hospital considered, be treated with diamorphine for the relief of pain; the mother argued that its use would compromise his chances of recovery. A month later the boy’s condition did indeed deteriorate; the same dispute arose and the hospital administered diamorphine to him. It was a case, therefore, in which there had been no application to the court by the hospital in order to resolve its issue with the mother. The ECtHR held that the boy’s rights under Article 8 had been infringed by the administration of the diamorphine. It observed that no satisfactory explanation had been given to it as to why, even in September 1998, prior to the crisis, the hospital had not sought the intervention of the High Court, Family Division, in anticipation of future emergency. It was also not satisfied that there was good reason for the hospital’s failure, at the later time when the crisis had developed, to make an emergency application to the court. For obvious reasons it was our view, as it was that of Parker J, that the Glass case did not assist Mr Bowen in his submission that application only at the later stage of emergency was an infringement of the child’s human rights.

His second authority was the decision of this court in Portsmouth Hospitals NHS Trust v. Wyatt [2005] 1 WLR 3995. There the complaint of the parents was obverse to that of the parents in the present case and, so Mr Bowen stressed to us, their complaint was rejected. It was that the judge had wrongly made a series of declarations in relation to the treatment of their profoundly ill baby daughter prematurely, i.e. before the anticipated developments in her condition which the declarations had addressed. The argument for the parents in the Wyatt case was that it was entirely unsatisfactory that the court should address problems which had not occurred, which might not occur and which, even if they occurred in substance, might present very differently from what had been anticipated. The hospital, supported by the guardian, defended its early approach to the court; and it was its submissions which this court upheld. The first submission of the hospital was recorded, at [98], as being that:

“There was a balance to be struck between: (a) applying in advance of a crisis when the exact medical evidence may be subject to some revision; and (b) waiting for a time which is nearer the crisis but with all the practical problems of a rushed hearing.”

In upholding the hospital’s submissions, including that first submission, this court observed that the answer to what it described as “the timing question” had to be fact and case specific. It was our view, as it was that of Parker J, that the Wyatt case, while clearly approving an early approach to the court in some cases, did not carry very far Mr Bowen’s argument that the timing of the hospital’s application in the present case was unacceptably, and in terms of human rights unlawfully, late.

At the hearing before ourselves, we had not only the note of the judge’s judgment but also the forceful submissions of Miss Caroline Harry Thomas QC on behalf of the hospital and of Miss Catherine Wood on behalf of the guardian to the effect that there was no procedural invalidity arising out of the fact that the hospital had approached the court only on Thursday 5 March 2009. Now moreover we have the benefit of the transcript of the judge’s entire judgment, including the part which she set out under the heading “THE DUE PROCESS ARGUMENT”. We took the view that it had clearly been difficult for the hospital to decide when the time had come to conclude that the developing issue with the parents was incapable of consensual resolution and that the assistance of the court would have to be invoked in its necessarily confrontational format. Indeed there was (we thought) a paradox inherent in Mr Bowen’s submission that the proceedings had been brought only at a time when OT’s condition had degenerated into crisis and that, notwithstanding a hearing enduring for most of the following ten days, there should at the end of it have been an adjournment of some significant length. We noted that in December 2008 the hospital had invited the parents to take a second opinion and that at any rate some approach had been made at that time on their behalf to the doctor at the Portland Hospital; that they had been fortunate enough to persuade Kaim Todner to act on their behalf with effect from a date as early as 29 January 2009; that, as Mr Bowen very properly told us, their solicitors had asked the hospital to furnish medical records referable to OT as early as 4 February; that on 25 February the hospital had duly furnished the requested records; importantly that on the same date the hospital, by its solicitors, had served upon the parents’ solicitors the substantive statement in support of the prospective application, which on 14 January had been signed by the consultant in paediatric intensive care in overall charge of OT; and that on 4 March, no doubt unaware of the serious deterioration in OT’s condition which was then taking place, the respective solicitors had had a discussion in which the solicitors for the hospital had suggested a round table meeting on 30 March. Thus, so it seemed to us, it would be wrong to conclude that the sudden issue of proceedings on 5 March caught the parents totally unprepared for the litigation which was to follow.

Then we considered the progress of the hearing itself and the extraordinary, indeed admirable, way in which the Division had been able to accommodate the case, without any prior arrangement, over in effect ten working days beginning on 6 March 2009. The hearing, we concluded, had taken as long as ten days partly because the judge had bent over backwards in order to afford time to the parents, with their advisers, to take stock and seek to collect evidence. The most obvious example was the facility afforded to the parents in relation to Dr Vince, even at the expense of the loss of the hearing in the afternoon hearing of 9 March. Mr Bowen told us that the parents were gravely doubtful about the ability of Dr Vince to assess the case prior to what he conceded to have been her negative conclusion and that some link had been discovered between her and the applicant hospital such as to raise a question-mark against her total independence. We considered that these untested assertions were no proper foundation for doubt about the validity of her conclusion, in accord with such a heavy weight of other medical opinion as the hospital had itself collected both internally and externally.

The facts (so we considered) were clear; the medical opinion was unambiguous; and, although one could not reasonably expect the parents to be able to bring objective opinion to bear upon so dreadful a situation, the only proper programme for OT in his interests was, as his own independent, professional representative contended, entirely obvious. Our view was that any accession by the trial judge to Mr Bowen’s application for an adjournment, whether on 6 March or on 19 March 2009 or, insofar as it could be said actually then to have been made, on any of the intervening days, would, in the light of OT’s condition, itself have been appealable. What plainly was not appealable was the judge’s decision to proceed forthwith, to conduct a full-scale, intensive, efficient yet unhurried determination, calibrated with an urgency commensurate with his generally deteriorating condition, of the most painful and profound issue imaginable, namely in effect whether OT should pass on immediately, or a little later following (so the judge found after an elaborate net reckoning of all relevant factors) profound further pain and misery.

Such were the reasons why we refused the parents permission to appeal.