Alder Hey Children's NHS Foundation Trust v D & Ors

This application is brought by a hospital trust for the following declarations:

As is self-evident from the nature of the declarations sought, at the heart of this case there is a family facing a situation of desperate sadness; parents having to contemplate circumstances no parent should have to contemplate and a child who lies gravely ill. This has been a difficult hearing for all concerned. It has inevitably involved consideration of a great deal of highly specialised and technical medical and clinical evidence. It may have seemed to those who love this child and who sat through that difficult and often very distressing evidence that we in this court room may occasionally have lost sight of the fact that it is all about him. I repeat here what I said to his parents at the start of the case. Even if it may sometimes seem so, no one has lost sight of that. I have held in my mind throughout this hearing that right at the centre of everything is their child.

It has been the express wish of one of C’s parents that he should not in this judgment be given a pseudonym but should be identified by a random initial only. So it is that he is referred to throughout as ‘C'

In outline form the parties' positions are as follows:

So it is that the matter comes before the court. An application was not made until January 2023 because it had been hoped it could be avoided. There have been discussions and meetings at which those who treat C, his parents and wider family have sought to reach agreement about whether it is in his interests to continue to receive ventilation. The Trust’s ethics committee has met and given its own conclusion. Best interest meetings and reviews have been held. In respect of one discipline second opinions have been sought by the hospital to feed into that process. Since in the absence of consensus an application has been made to the court it must be determined. In making the determination I hold in my mind that the power of the court is to decide whether the course proposed is lawful or whether it is unlawful. Specifically, since during the course of the hearing the parents have each made references to what ‘anyone’ would want for themselves or their child, I make it explicit that I have not allowed to infect my thinking consideration of what I might wish were I, or someone I cared about, in C’s position. The question which I must decide is what is in C’s best interests.

C’s condition makes this an exceptional case even amongst the cohort of applications which come before the court for such declarations. Another unusual feature of it is that the dispute is not between the medical profession on one side and the parents on the other; or even the result of differing conclusions reached by clinicians but arises essentially between his parents. C's mother is supportive – in a positively active sense rather than weary resignation – of the approach invited by the Trust and the Guardian. C’s father is passionately and strongly opposed to it.

In February 2022, C who was then 13 fell ill. He had recently recovered from Covid 19 which he had had the previous month and had made him feel unwell but which he did not seem to have had terribly seriously and apart from that he had previously been in robust good health. C developed a rash at the end of February and was taken to his local hospital on 27^th February. The rash got worse, and he went back the next day. He was admitted and the working diagnosis was Steven-Johnson Syndrome and later there was a working diagnosis of Toxic Epidermal Necrolysis (TENS). These are both autoimmune response conditions which manifest themselves as blistering and degradation of the surface of the skin. The distinction that tips broadly similar symptoms from one diagnosis to another is one of degree. Where up to 30% of the skin is affected, it is characterised as Steven-Johnson Syndrome. Where is exceeds 30% it meets the definition for TENS. It is an incredibly painful condition; such that dressings applied to the skin sometimes must be changed under anaesthetic. That has been the case here. In C’s case 90 % of his body was affected. He was transferred for admission to a major teaching hospital. The working diagnosis of TENS was confirmed by skin biopsy. Those who have been responsible for his care are confident in the diagnosis but remain uncertain of the precipitating cause. It is thought most likely either that it is linked to his infection with Covid 19 or that is linked to a reaction to ibuprofen. Following his transfer, he was, on 5^th March, ventilated. That is to say reliant on mechanical means to maintain his breathing. He has remained ventilated throughout the period save for two occasions when attempts have been made to extubate him. Neither has been tolerable and he had to be reintubated.

Another consequence of the breakdown of the integrity of the skin is that it defeats one of the main functions of the skin which is to keep the body safe from infection. Those with TENS are therefore vulnerable to infection –notably sepsis. On 15^th March C had an episode of septicaemia. His temperature reached 43 degrees centigrade, and he was established on a renal support machine. He had overt multiorgan system failure. Three days later C developed low blood pressure and experienced major bleeding from many sites including his mouth. An MRI scan carried out on 23^rd March suggested a toxic neuropathy causing localised bilateral symmetrical signal change affecting the dentate nuclei within the deep cerebellar white matter. Those treating him were unable to identify a clear cause for these non-specific changes. From this time on there has been persistent hypertension requiring monitoring and management. On 29^th March 2022 –so exactly one year before this hearing commenced – the most recent attempt was made to take C off the ventilator. It was unsuccessful.

By early April, investigations into his condition by CT and MRI scans were suggestive of Posterior Reversible Encephalopathy Syndrome (PRES). The following day he had a suspected epileptic seizure. On 8^th April C required a tracheotomy under general anaesthesia. He underwent an MRI scan on 28^th April in part to investigate what might be the cause of his poor respiratory drive. No abnormalities were detected on the brain stem to explain this, but what could be seen was an improvement in PRES compared to the previous MRI. Along with the presentations detailed thus far, C was, despite a calorific intake exceeding his daily requirement, losing weight markedly and so he was referred to gastroenterology specialists.

By the end of April a nerve conduction study showed severe generalised polyneuropathy affecting both sensory and motor fibres, with evidence of acute denervation. To the extent that it was possible to test the relevant auditory areas of the brain there was no sign of response but it seemed that C was able to hear. That remains so to date. There is no dispute about this, and from some of the recorded clips of him produced as part of his father’s evidence which I have watched and which will be considered later in this judgment, it is clear that he has hearing. As to sight, it is thought that he retains some vision. On testing electrodiagnostically (undertaken much later in his hospital stay on 8^th September) it was found that the study undertaken showed ‘abnormal visual’ which was thought to equate to him having ‘rudimentary vision with likely at least some impairment and moderate retinal change’. Those witnesses who were asked during oral evidence about this by his mother agreed with her description of him as ‘functionally blind’.

His difficulty in taking nutrition continued and on 20^th May C began to receive this nutrition via total parenteral nutrition (TPN). That method of delivery carries with it not only the obvious risks of infection but also in the longer term is well recognised as being harmful or at least potentially harmful to the liver. Which is why, if other methods of delivery can be found it is generally preferred to avoid it. It could not be avoided for C. In the period from June to October, attempts were made to reintroduce enteral feeds. Those attempts were unsuccessful and were accompanied by pain and discomfort for C. Although he cannot speak, he is able to express when he is in pain and at this hearing I have heard graphic descriptions of how he does this by grimacing, moving his head, squeezing his eyes tightly shut, clenching his mouth or by crying.

It could not be understood why there was pain associated with feeding so on 21^st July an oesophago-gastro-duodenoscopy (OGD) and colonoscopy was carried out under general anaesthetic. This was normal to the naked eye. The biopsies to his oesophagus showed some changes, but these were not significant and did not explain his gastrointestinal symptoms. By October the attempts at enteral feeding were discontinued because of the burden those attempts placed on C and the lack of any positive outcome for him from that burden.

Towards the end of July a further MRI of his brain and spine revealed generalised loss of volume in the brain suggestive of atrophy. He was however, as a more positive sign, by the middle of August noted to show some respiratory effort. A further nerve conduction study carried out on 16^th August showed severe generalised polyneuropathy affecting both sensory and motor fibres with no evidence of reinnervation.

At a clinical decision-making support meeting on 24^th August C’s case was discussed. One of the descriptions given to that meeting was that C was described as appearing pervasively sad day to day with episodes of pain every day. Within the material provided to me in advance of this hearing I had read already of prolonged episodes of what appear to be a combination of pain and distress. The identification of ‘sadness’ at that meeting is congruent with parts of the evidence in which I had read of occasions noted by the nursing staff when C is noted for long periods to be crying without a cause that is obviously pain related and when he is inconsolable. At this hearing I heard from Dr L a consultant in palliative medicine that for her, these episodes in which she could not attribute or link his obvious distress with pain or with discomfort from some cause which could be identified and so alleviated were the most worrying aspects of C’s presentation.

The conclusion of those at the meeting on 24^th August was that C’s prognosis was poor. The decision was made at a multidisciplinary team meeting following on 5^th September to change the goal toward which the medical and clinical professionals with care for him were working from one of rehabilitation to one of maintaining posture. From Dr K at this hearing, I have heard how that change of emphasis was one which those working with him found helpful because, for instance, it impacted upon the physiotherapists’ approach to the interventions they were giving him and the extent to which those interventions included handling and movement which was often causing pain. The necessity and purpose of pain and discomfort experienced for a rehabilitative goal was he said one thing but when the goal changed the balance of what was in effect inflicting pain and discomfort to no purpose tipped the other way.

On September 26^th there was another episode of spontaneous effort of breathing. As on the previous occasion in August this was not at a level to maintain ventilation

During his time in hospital C had had a Broviac line inserted. By October it was necessary to consider whether to reinsert that line, a procedure which required to be undertaken under general anaesthesia. C’s condition at the time meant that whether this should be undertaken was considered at a best interests meeting. The decision was that it should be, and it was inserted on 21^st October.

The prognosis for C by November in the view of those treating him was poor and on 22^nd November he was discussed at a Clinical ethics committee meeting. The unanimous view of the committee was that it would not be ethically acceptable to continue with Life Sustaining Treatment since this would not serve C’s best interests. The conclusion of the committee was that he had ‘no foreseeable chance of recovering from his severe and untreatable peripheral polyneuropathy and would remain dependent on ventilation to sustain life and because C suffers from significant amounts of distress, anxiety and pain when receiving therapy which is now not aimed at treating his condition, (rehabilitation), but aimed at maintaining his current condition and prevent further potential deterioration. As such, the burdens incumbent on continued therapy, outweigh the benefits that would be gained from continuing with these therapies

At a best interest meeting on 8^th December the question of continuing life sustaining treatment was discussed. The clinical team and C’s mother (and stepfather) were agreed it would be in C’s best interests to withdraw life sustaining treatment and move towards palliation. This was not agreed by C’s father.

Towards the end of December his Broviac line became infected and had to be removed. This led to detailed discussion, given the ethics committee and best interests meetings about whether it was right to put him through the procedure to replace it. In large part because there was an identified dispute as to best interests and that would have to be determined in the absence of consensus, it was reinserted on 10^th January the view being taken that it would be wrong to pre-empt the decision. Proceedings were issued on 16^th January 2023. The matter came before me in the urgent applications list. At that hearing I made case management directions and listed the matter for this hearing.

In the period before the matter came on for hearing there were two developments. First a nerve conduction study on 19^th January 2023 indicated a small electrical outcome which may on one interpretation be indicative of reinnervation; Second another attempt at a spontaneous breath was noted.

Following the conclusion of submissions and with the agreement of all parties, and exceptionally, late evidence was sent to me of further episodes of attempts at breathing when the ventilator was turned down, and of C responding to the presence of his family with smiles.

During his life before he became so unwell C lived with his mother and his step-father. His parents are separated. He spent a good deal of time also with his father and his step-mother. He is the only child of his parents, but he has two half siblings on his mother’s side and three on his father’s. As is the way of things, the characterisation of them as half siblings is neither here nor there and to him they are his brothers and sisters. C is at secondary school and had hopes – more rooted in reality than is sometimes the case – of being spotted by a scout to play football professionally. As well as being interested in sport, he had recently found himself more motivated to work hard academically because he was ambitious to study architecture and had realised that he would need the grades to do that. He had been both baptised into the Roman Catholic faith and had during his primary school years, so his father told me followed the path familiar to those of that Faith, of making his first confession; first holy communion and then being confirmed. He had as he became older practised his faith with a lighter touch.

There is a difference of opinion, or perhaps of emphasis, between his parents as to how significant a part of his life was his faith by the time he became ill, but it is not one which I need to determine. His father straightforwardly told me his son was a boy who believed in God. I will return to the way in which the father invites me to consider the question of religious faith elsewhere in this judgment. His mother is not someone who practices the Roman Catholic faith and told me that she had not regarded C as having any belief in God and certainly he never spoke to her of religion. I noted however with some interest that part of her evidence in which she described to me how in the early days of his illness she had come in to find the parish priest at his bedside and blessing him. She told me that she had instantly worried that if C had woken up and seen a priest at his bedside he would have thought he was dying. That vignette inclines me to the view that whilst his mother does not see religion as something that was especially important to C, she recognised it as a part of his life.

C is now 14. Nobody has sought to persuade me that he is Gillick competent and so able to make the decision as to his future treatment. It is possible that in the earlier stages of his illness he may have been Gillick competent. I accept what has been the position of all parties at this hearing that if that were the case then, it is not so now and that he does not have competence to make the decision.

There has been anxious consideration given by the Guardian and relevant members of his treating team especially Dr L who has given oral evidence on the point, to the question of whether it would be appropriate to seek explicitly C’s own view by exploring with him his wishes and feelings. There is evidence that he has been able to respond to clear and closed questions by communication tools such as blinking or sticking out his tongue. The extent to which he is still able to respond to that sort of question is in issue between the parties, but no one suggests he cannot respond at all. There are however very real uncertainties about the extent to which he understands, and his ability to understand nuance. His communication taken at its highest is very limited and would not permit a nuanced and difficult discussion such as would be required however sensitively undertaken to ascertain his wishes and feelings.

In her discussions with the Guardian, about the possibility of directly seeking to ascertain his wishes and feelings about continuing life sustaining treatment Dr L had not thought it an exercise that could be safely undertaken. Prominent amongst her thinking was the prospect of C who had previously been frightened by being in hospital being given however sensitively information that one possible outcome for him now was death. I had found her view on that and the way she expressed it difficult to square with what had been her written evidence in her report as to what should be the approach to C if he became more unwell and showed signs of active dying or were Life sustaining treatment not to be continued. This had been expressed in the following terms: At this stage, it would be important to explain in simple terms that he was imminently dying and offer reassurance that his family were present, and we would continue to look after him

I had not understood on reading it why she would regard it as important to explain to C that he was dying, and I found it even less easy to understand having heard her evidence about C’s earlier fears. When I asked her to explain the thinking, her response was that what appeared in that part of her written report was not what she meant. In the otherwise uniformly excellent and careful evidence from the hospital this was unfortunate. Within the court room when consideration came to be given to that part of the report, there was a very obvious increase in the distress of family members present at the thought of someone telling C he was about to die. I have heard nothing at this hearing that suggested to me that it would be in C’s best interests to be told, if for whatever reason the time comes, that he is imminently dying.

In the document prepared by counsel at the outset of this hearing the Guardian's position on ascertaining directly his wishes and feelings is expressed in the following way

I understand how it is that this very experienced guardian from the High Court team has concluded that it would be neither possible nor safe to seek directly to ascertain his wishes and feelings. Each of his parents agrees with that conclusion and neither of them would wish any exploration directly with him of his wishes and feelings to take place. That has remained his father’s view notwithstanding his own position (and the evidence he produces to support it) that C is far more responsive than others who spend less time with him appreciate.

In the light of that collective position, I have taken the view that I should not (as I otherwise would) go to see C in the environment in which he is being cared for. An explanation would have to be given to him about who I am and why I had come to see him. The risk of distress to no purpose that such a visit would carry with it is obvious.

The declarations Mr Brownhill seeks on behalf of the trust are as set out above. In determining C’s best interests and whether in the light of that determination I make the declarations sought, I do so within the context of either:

This is not a case in which there is a prospect of ventilation in a home setting. It emerged during the oral evidence that references to a ‘home ventilator’ are not to be equated to ventilation at home. Neither is there, because of the complexity of C’s overall presentation the option on the evidence before me of a stepping down to care outside the PICU setting.

I heard oral evidence from

In addition to the live evidence called I had the joint external opinion from Drs Varma and Desai consultant paediatric neurologists at another large teaching hospital dating from November last year which was in agreement with the neurological opinion on which the Trust relies, and a one paragraph updating report from Dr Varma obtained the day before this hearing started indicating that her opinion remained unchanged.

I was provided with and have read the best interest meeting minutes from the meetings held on 11^th October and 8^th December 2022; the clinical ethics committee meeting notes from 22^nd September 2022 and the clinical decision-making minutes from the meeting held on 24^th August 2022. Some but not all of the MDT meeting notes were available. A separate bundle of C's medical records had been lodged before the hearing. During the hearing a variety of other medical notes and records were produced including MDT notes, pain scores, OT notes, SALT notes and some but not all of the nursing notes requested. Mr Mant has made moderately pitched but proper complaint on behalf of his client that in a case such as this all relevant documentation such as for example the detail contained within the nursing notes should have been provided so as to permit a proper analysis of the burdens and benefits of continued treatment by an informed picture of C’s day to day life.

Other than the reports from consultant paediatric neurologists at another teaching hospital there has not been in this case an external second opinion sought.

I have heard powerful evidence from C’s mother and from his father. They each of them told me about the boy he was as they each knew him and the boy he now is as they each know him now. The views of parents do not determine what is in a child’s best interests but they are of significant value in the court reaching that determination so I have listened with great care to what they have said and read equally carefully the way their views have been expressed in writing. What appears in this judgment is intended to encapsulate those views not as verbatim replication.

His father told me that he visits his son 6 out of 7 days usually in the later part of the day. On the days he doesn’t go, his wife goes and his other sons and his daughter also visit. He spends hours sitting with him stroking his face talking to him. Having what he called a laugh and banter across the bed about for example the fortunes of his local football team, to which his son shows a response. He agrees that C is in pain sometimes but not as much or as often as is suggested. He doesn’t believe that the days of little or no pain are sufficiently recorded and that he thinks may skew the picture. The picture he sees is of a boy who is sometimes settled sometimes not ‘if he wasn’t settled and calm and was in pain and grimacing the majority of the time then we wouldn’t be here’ he said early in his evidence. What is reported by the nurses when his wife makes the daily telephone enquiry is usually that C is settled. He does not regard that report as the nurses seeking to spare his feelings.

He doesn’t agree that C is cognitively impaired although he does think it likely that sometimes when he is on strong pain killers it is likely to affect some of his responses. Essentially however the point for him is that C is cognitively aware and that as he put it ‘my son is in there and if he wasn’t aware that would be different but he is and there is so much there’. This he said could not be clearer from the WhatsApp videos he exhibited to his statement.

He had seen the effort at a spontaneous breath on 19^th January and provided a screenshot of the reading it is something he regards as important and worthy of investigation and the same goes for the fact that there has been as he put it ‘a flicker’ on the nerve conductivity investigation. He very strongly disagrees with the decision to step back the physiotherapy. Having heard the evidence about an MDT meeting where Dr K had said there was discussion about C’s nerve conductivity perhaps improving to the point where he could use a joystick in a wheelchair he did not think that now was the time to give up.

What he wanted to convey however was that although he strongly felt that there were other investigations which should be done, he was not unrealistic. He knows that C is never going to be the boy who played football, went on camping trips, spent too long on his X box and had an expectation of an independent grown-up life. Towards the end of his evidence he said this:

E is a man for whom religion in important. Elsewhere I have set out his own view of his son’s religious beliefs. I wanted to understand from him the role which from his perspective (whatever weight I might give it in the balance) religious belief should take. He confirmed what I had suspected; although he does regard life as sacred he does not say life-sustaining treatment at all costs. That is why in his written evidence he is able to contemplate circumstances in which he would ‘let him go’ and why in his oral evidence he was clear that if he thought C were in pain the majority of the time he would not oppose it. He explained to me that he believes in, and has latterly been furious with, God. He believes in, and hopes for, miracles. His faith, as he put it, is important but it runs alongside rather than leads the position he takes about whether Life sustaining treatment should continue for C.

C's mother in some ways had less to say since she agrees with and supports the position taken by the Trust but her evidence was no less affecting for that. She said that she felt in some ways guilty because here she was, a mother advocating for the death of her child. When first he had gone into hospital like everyone else, she had hoped for a recovery. She had not left the hospital for the first six weeks. She could not praise enough the doctors and nurses who have looked after him so well. As time went on however, she had realised that this hope was not going to be enough and gradually she realised he wouldn’t get better. She had known in her heart that he was not going to recover even before the clinical decision-making meeting on 24^th August. Since then, she thinks the reality is that C is dying and is being kept alive in a way that is cruel. She still visits him but goes now several times a week. Sometimes her daughter, C's older sister goes with her. His younger brother, with whom C has always had a close relationship, has visited but does not really understand what is happening. As a snapshot of the impact on the family as a whole she described to me how she had dissuaded her own mother now in her 70s from visiting C and had lied to her about his condition so as to protect her describing him as ‘mostly sleeping’.

Although there were times earlier when C smiled she has not seen that for a long time. She is distressed and thinks he would be too by the situation in which he is now. She had not watched the WhatsApp recordings his father had made and felt very strongly that it has been ‘disrespectful’ to film him in that way for this case and to have him ‘performing on command.’ It was she said like he was not a person, and she did not think his father should have done it. When she thought about C before he became unwell she remembered how sporty he was and how proud she had been of his real ability on the football field. It was not just wishful thinking that he might have gone further with his football. She told me that even though he was only 13 he was also really serious about architecture and had asked about extra tuition. All of that life she said was lost to him now. All he had was lying in a bed, blind, able to move his head a bit, put out his tongue. ‘The only thing he can communicate’ she said ‘is pain’.

From the visits she has with C, she believes that he is always in distress or pain. Although she had heard the word ‘settled’ used at this hearing by others what that meant to her was that because he had needed morphine to kill the pain that had settled him. C’s mother was especially keen that people should realise that his pain and his situation is being normalised . ‘It is not normal to need morphine. It's not normal to be lying in a bed blind not able to move not able to even itch his nose or tell someone he needs to itch his nose’. It was evident from the way she spoke that C’s mother was distressed by the pain he is suffering as a result of his polyneuropathy, but the more her evidence continued, the more I had the strong sense that for her, at least as much if not more than the pain, it is the indignity of his situation which she regards as so intolerable. Her clear view is that C also would find – and she thinks is finding – it intolerable. Since he was quite a small boy, aged 7, he would not allow his mother into the bathroom with him. Each of his parents and both his step-parents described him as a shy boy. His mother says that he would find being washed and changed by nurses beyond difficult. He would be embarrassed, she said to be having his pads changed and to be reliant on a catheter. She couldn’t imagine any 14 year old who wouldn’t be embarrassed but she knew for sure C would. With just as much force and conviction as his father had said the contrary she said ‘I know C wouldn’t want to live like this’.

She told me also that she believed C would be ‘mortified’ at the distress the situation was causing to her and to his family. The last words he said to her when he was able to speak were ‘mum don’t worry about me I love you’. She believes him to be either in pain or distress or both all the time. Occasionally now she might see him seeming to smile when he is asleep but that makes her wonder what he must feel on waking to his life. When she had visited during the days of this hearing what she had seen from outside the room before she went in was C lying in bed crying. She said that she had struggled to put into words how awful a situation she feels this is for her son and his family but said she thought the closest she could come was ‘If this were an idea someone came up with for a film no one would make it because it is so terrible’.

C’s mother was also explicit that she does not support the idea of any further opinion about C’s prognosis or likely improvement. She regards it as insulting to those clinicians who have given such clear and straightforward evidence to be doubting them. It is also in her view entirely pointless and just continues C’s life of pain longer and for no reason. Although she had sat and listened to the discussion about whether C might improve to the point where he could operate a joystick in a wheelchair, she thought that was complete nonsense and was ‘never going to happen’. C is not even able to tolerate the pain of being moved to a sitting position and has not the muscle tone to support it even aside from the damage to his spine from the scoliosis.

From the written evidence I have also something of the view of his wider family- his uncle; his stepmother and stepfather; his brothers and sisters. Some of them have sat in court to listen and to help support his parents. The families align, nearly but not quite, with the views expressed by the mother and father. Not quite because the father told me that one of his other sons disagrees that C should be maintained on life sustaining treatment. The overall impression I have formed of the wider family view is that they all of them love C, he remains an important member of their family and they want the best for him but they have arrived at different views of what that is.

There is a unanimous view amongst all of the Trust witnesses that it is not in C’s interests to continue to receive life sustain treatment and that it is in his best interests for it to be withdrawn. From those who amplified their written evidence orally at this hearing there has been no change to their collective view.

Dr K knows C well, he has cared for him since the second day of his admission to the PICU. He agreed that his case is unique in his and his colleagues’ experience. Dr K summarised C’s presenting problems as follows

As to the last issue, CLABSI, this which it had been hoped was being effectively treated with antibiotics had, by the conclusion of the evidence worsened such that there was the prospect of another removal of a now chronically infected Broviac line and replacement after 7 – 10 days to clear the site of infection. Dr K is worried about the prospect of repeated episodes of non-viable Broviac lines however much care is taken to maintain the integrity of the line.

In relation to what continuation of life sustaining treatment would mean for C his view is that it would involve continuing care in much the same way as now including medical oversight (such as attention to new problems such as infection), nursing interventions (suction of tracheostomy, administration of drugs, hygiene cares, repositioning), therapist input (maintaining positioning and respiratory physiotherapy) and nutritional attention by dieticians. This care is not in Dr K’s view and experience realistically deliverable outside critical care (Paediatric Intensive Care or should he become more stable in High Dependency) - C’s acuity would certainly be too high to be managed safely on a standard ward even with expertise in Long Term Ventilation.

The benefit for C of continuing care is that it would include the preservation of life and give him the ongoing enjoyment that he derives from familial visiting. In both his written and his oral evidence Dr K was careful to acknowledge that C’s parents do not agree what is the extent of that enjoyment. He readily agreed however that the WhatsApp recordings produced by the father show response and interaction.

It would also maintain the possibility for improvement however small such a possibility might be. Dr K’s view as the paediatric intensivist in this case is that there is a negligible prospect of any meaningful improvement.

Dr K’s opinion is that to withdraw life sustaining treatment would be in C's best interests and would allow him what he describes as a controlled, dignified and peaceful death. He explained in some detail the reasons which have led him to come to that conclusion and which may be summarised as follows:

In the overarching consideration which he and his team had given to C’s situation over many months, they collectively arrived at the point that there is no good outcome for him. He acknowledged that withdrawal of life sustaining treatment was in his view the ‘least bad’ outcome. No one within his wide multidisciplinary healthcare team had, he said, expressed a contrary opinion.

Dr K was asked in some detail about discussions at MDT meetings and in particular a meeting he had attended on 1^st February 2023 at which there had been some discussion about the prospect of recovery of movement following a nerve conductivity result. Present at the meeting were Dr S from Neurology and her neurophysiology colleagues.

The meeting records the prognosis as 'guarded at best and poor at worst' but there then appears following further discussion this: ‘on further discussion guarded/good would be very limited recovery (5-10%) of axones which might be reflected in a flicker of movement. This is not certain and a clinically significant recovery seems extremely unlikely’ . From the context it is not possible to tell, and nor could Dr K who had been at the meeting say whether what was under discussion was 5 –10 % of axones in total or from the level at which C had axone recovery at the time of discussion. Dr K did not have minutes or a note of the meeting, but in his evidence though he could not recall from whom it came he spoke of one component of the discussion about recovery at that meeting including the possibility of being able to operate a joystick.

The MDT notes of that meeting were notable for 2 further aspects recorded about which Dr K was asked. First: Dr S is still wondering whether repeating this study in a short time - 1-2 months might be worthwhile. He could not help, unsurprisingly, with what had been in the thinking of Dr S in wondering that and the question was revisited with Dr M (as to which more later). The other recorded aspect read: ‘There was also discussion that there may be some merit in assessing C's muscles with imaging as if there is fibrosis and fatty changes in the muscle then this may be a sign that this is irrecoverable’.

That imaging appears to have been undertaken by the time that there was an MDT meeting on 8^th March, at which Dr K was also present and about which he was also asked. By that meeting what is recorded is that: There is evidence of atrophy of the muscles and some fatty deposition. There is also some dependent oedema in the pelvic muscles and possible inflammation/oedema

Yet despite the seeming fear at the 1^st February meeting that detection of fatty deposits might indicate irrecoverabilty, the notes continue:

Dr M first met C on 21 March 2022 after he had been in PICU for some while, but his responsiveness and interaction had been observed markedly to have deteriorated. He has been involved in C's care since and taken part in best interests meetings and discussions. In terms of recovery, by May last year C has been able to open his eyes, turn his head to mid-line and show responses to questions by eye blinking, putting out his tongue or opening his mouth. Dr M was clear that recovery in those who do recover from polyneuropathic critical illness is slow, for him the lack of any significant steps to recovery during the last 12 months was a very discouraging indicator. Since neuropathy was so widespread here and there have been no steps to recovery he was doubtful that there would be meaningful recovery within say the next 3 months. Notwithstanding his caution, cross-examined by Mr Mant about the MDT records to which Dr K had been taken Dr M when asked by Mr Mant if there were to be a further EMG and clinical analysis and a consideration of the amount of independent breaths that would give more confidence either way as to prognosis, agreed that it would. He had previously expressed the view that the changes seen were not, or were not likely to be clinically significant.

Asked explicitly about the way in which Dr S had been wondering about the possibility repeating the study after a short period of months, whether that would not be a reasonable thing to allow that extra time to be more sure what is likely and what is the best case, Dr M again agreed that it would be a reasonable thing.

Dr P has had overall responsibility for C’s gasteroenterinal care. It has been challenging and ultimately impossible to reinstate him on any form of enteral feeding successfully. He is currently reliant on TPN for all his nutritional requirements. Successive attempts to reintroduce enteral feeds have been unsuccessful. Further attempts could, she thought, be considered if the collective MDT felt appropriate and in conjunction with a clear plan for increasing or reducing depending on his symptoms. However, it has been difficult to find a suitable opportunity for restarting feeds due to C’s baseline level of discomfort/distress, and the potential negative impact on his symptoms and quality of life that it would have. Furthermore, even if feeds are restarted, it is likely that C will continue to require TPN in the medium to long term based on his previous response to feeds. Notably that response has been characterised by the experience of very significant pain and discomfort.

Dr P ’s view remains that long term TPN is associated with damage to the liver, the risk is lessened if feeds into the GI tract can be added which has not been possible for C so far. For children to be discharged on TPN, the family needs to be trained to administer it at home and then a request is sent to NHS England to be approved. As it relies on tubes into the veins to provide TPN, there can arise issues with the lines blocking and needing to be replaced, if this occurs often then it can be difficult to identify new veins to be used. All of the above would only be possible if C was considered well enough to be discharged home. He is not of course a gastroenterology patient only and the wider clinical evidence of his condition means that discharge home is not an option.

It is this that has brought her to her view when considering his best interests which is expressed in these terms C continues to have difficult symptoms to control and is not able to tolerate feeding into his bowel despite intensive input. Long term TPN will not improve his symptoms of distress/discomfort. He may be able to tolerate some feeding into his gut but, based on his recent toleration of feeds, this will not be sufficient to meet his requirements for fluid, nutrition or growth. It is likely that he will continue to remain reliant on TPN to meet his nutritional requirements which brings with it risks of infection, damage to his liver and the potential need to replacement of his central lines used to deliver it.

From Mr Q , respiratory physiotherapist, I heard graphic descriptions of the physiotherapy interventions carried out with C during the period that the goal towards which the team were working was rehabilitation. It is unnecessary to set out all of the detail but among the aspects that were striking from the evidence were:

Since he had no purposeful movements, it was necessary to use a tilt table with him. On other occasions a chair hoist was used to move him to a sitting position in an effort to improve posture. C found sitting unbearable. A bed bike had achieved no purpose. To be experiencing the discomfort and pain inevitable in physiotherapy were it working to a rehabilative goal would be more readily justifiable than the clinical decision making committee found it to be when it met on 24^th August. Having heard the evidence of Mr Q of what was entailed it can be understood why the decision to move away from the physiotherapy regime in place was made.

Physiotherapy in the sense of passive range of movement continues, Mr Q ’s ultimate view to the court remained as he had expressed it in writing:

His view is that the only benefits for C of receiving Physiotherapy at present are to maintain the range of motion of his joints and his position in the bed as best that can be achieved, and to assess his ventilation and provide treatment if indicated. To attempt the previous regime would be to place a significant burden on C in the form of significant distress and worsening of his posture.

Charge nurse R was similarly bleak about the prospects for C’s future. His evidence, however, illustrated how subjective a concept pain is not only for those experiencing it but also for those observing it. He did not agree when asked that his experience of C matched what appeared from the pain charts to be some days when there was little or even no pain. His own experience was of pain or discomfort a good deal of the time. He could not recall the last time he had seen C smile. In the earlier stages of his admission to PICU Mr R had seen C on a near daily basis. The fact that he is now in a more senior role with management responsibilities means that his contact though continuing is less. Though when I came to hear his mother’s evidence she too made reference to the fact the infrequency of smiles and responses as time has continued.

I treated with some caution those parts of his statement where he gave opinions about C’s up to date condition. I do not think for a moment that he was not giving a view that was genuine or that was in any sense intended to mislead but I was struck by the dissonance between what he had said in parts of his statement and the other evidence about C. By way of illustration this:

The observation that C’s communication has diminished chimes with other evidence – though no one can say with clarity why this is, but it is simply not the case that he can no longer move his tongue or his head. Nor did I recognise in the evidence of other non-family witnesses the description of one in whom all other aspects of his personality are absent and with an ability to express only distress. Mr R had to accept in cross examination that his description in this part of his statement was not reflective of the situation in which C now is albeit that the situation is very bad. I was left perplexed as to how it had come to be expressed in that way in his written evidence.

Dr L even in her experience as a palliative care expert where management of pain in seriously, often terminally, ill children is at the fore of her professional skill-set has found C’s case uniquely challenging. She was unequivocal in her oral evidence that she was unhappy with both the frequency and the degree of episodes of breakthrough pain which remain a feature of his life.

She explained that it is not possible to assess C’s current cognitive ability. C appears to be able to follow one step commands such as stick out your tongue. C is inconsistent when asked to follow two step commands such as, stick your tongue out then blow a kiss. Asked if she agreed that the videoclips of responses to his family showed more than that, she was unconvinced. There are significant restrictions in what assessments can be undertaken due to C’s limited movements and limited communication. He responds to people’s voices using head movement and facial expressions. His level of understanding cannot be assessed, and it is difficult to know whether he is understanding the content of a conversation or responding to familiar and/or animated voices. Expanding on this it might be that C, who is of course not a toddler, may be interacting with loved ones in the way a toddler might and what he is responding to is familiar voice, modulations and tone. Mr Mant, whilst reminding her that the father’s experience is of interaction at a higher level than that, asked Dr L whether she would not agree that even the ‘toddler’ interactions she thought these might be are a valuable and meaningful human interaction and she readily accepted that they are.

Her own assessment of his communication responses is that they are inconsistent and unreliable at times as observed and assessed by her over multiple interactions. This is corroborated by the therapist assessments as well as outside formal sessions by nursing staff that care for C. Understanding the reasons why can only be assumed but therapists have considered mood, distractions, fatiguability, impact of medications and motivation. In this respect she was unable to assist in her oral evidence with whether what she perceives as a diminution in his responsiveness is an inability to respond or a decision not to – i.e. can't or won't. She used to be far more confident in knowing what he had understood and what he was communicating – a clear example she gave was of him rolling his eyes up to the right which was an indication of displeasure/boredom/disinterest with whatever he was being asked. She had not seen that latterly. Though it seemed on the recordings that some others working with him had seen something similar.

Dr L although cross examined at length in relation to what the most objective measure of pain i.e. that which comes from the pain scores, remained of the view that C’s pain was neither well managed nor diminishing and was unwilling to accept on the basis of a seeming improvement as between February and March this year that that was so. The picture in her view is far more complex. Her overall and considered opinion remained as expressed in her written evidence:

All of those medical professionals who have given evidence before me have done so with a sincerity and an anxious concern for C which has been striking. It is reflective of the way in which they have looked after him for so long.