England and Wales High Court (Family Division) Decisions

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Cite as: [2017] EWHC 3619 (Fam)

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If this Transcript is to be reported or published, there is a requirement to ensure that no reporting restriction will be breached. This is particularly important in relation to any case involving a sexual offence, where the victim is guaranteed lifetime anonymity (Sexual Offences (Amendment) Act 1992), or where an order has been made in relation to a young person.

		Neutral Citation Number: [2017] EWHC 3619 (Fam)
		Case No: FD17P00623

IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION

Courtroom No. 34
West Green Building
The Royal Courts of Justice
Strand
London
WC2A 2LL

10th November 2017

B e f o r e :

THE HONOURABLE MR JUSTICE WILLIAMS
____________________

	A NHS TRUST
	and
	Mr and Mrs S
	And
	(a Child)

____________________

MS V BUTLER-COLE and MS K SCOTT (for judgment) (instructed by Browne Jacobson LLP) appeared on behalf of the Applicant
MS L CAVANAGH (instructed by Irwin Mitchell LLP) appeared on behalf of the Respondent Parents
MISS CAREW (instructed by CAFCASS Legal) appeared on behalf of the Children's Guardian

8, 9 and 10 November 2017 and 8 December 2017
____________________

HTML VERSION OF JUDGMENT (FOR APPROVAL)
____________________

MR JUSTICE WILLIAMS:

As a preliminary, I will just restate that these are proceedings under the inherent jurisdiction of the court with the respect to children under the provisions of section 12 of the Administration of Justice Act 1960, which I apply in order to maintain this little girl's anonymity. In the unusual and very fact specific circumstances of this case, I also consider at this stage that nothing should be published which would identify the child's parents or the doctors. I gave my decision on L 's best interests yesterday with very brief reasons at five o' clock and now I set out more fully why I reached that decision.

The applicant in the case is an NHS Trust, who has been represented throughout by Ms Butler-Cole, represented today by Ms Scott. The first and second respondents are Ls parents, Mr and Mrs S, who are represented by Ms Cavanagh. L herself was joined as a party and a guardian appointed. Her guardian is Miss Julian, who is now being represented by Miss Carew of Cafcass Legal. Mr Hinchcliffe appeared for Cafcass on Wednesday afternoon.

The little girl whose future I am asked to consider is L, who was born on [a date in] 2015. This is, on any level, a tragic case. L, it is accepted, suffers from a condition, a syndrome, which is a fatal condition, death usually occurring between two and six years of age. It is extremely rare. As if that was not enough of a nightmare for L and her family, her older sister, also has a terminal condition. She is four. The parents are both devoted to the girls and have provided outstanding parenting; they are dedicated to them both. Now L is hospitalised, they take turns at hospital and at home, assisted by their wider family, to provide the very best they can for them. Given this court is usually concerned with parents whose behaviour towards their children has fallen short of that to be expected, it is rare that this court has to consider questions in respect of a child who is receiving parenting of the very highest order.

The reason why I am called upon to consider L's best interests is because her treating doctors and her parents no longer agree on the treatment plan for her. Her doctors consider she is in the terminal phases of her condition and is approaching death. They do not believe that there is any benefit to L in receiving invasive life-sustaining treatment in the form of mechanical ventilation or cardio-pulmonary resuscitation (CPR), indeed that it would be more harmful than beneficial to her and that as she deteriorates further she should be provided only with palliative care to ease her suffering as she nears death and as her life ends. Her parent's belief is that L has not yet reached the terminal phase of her condition and that, aside from specific deteriorations caused by identifiable causes such as aspirating medicine or food, the underlying condition is not yet as serious as the doctors conclude. That being so, they believe that if she suffers a crisis which required mechanical ventilation or CPR she should be given the chance to get through it and to lead a little more of the life with her family that she benefits from.

The position of the Trust in response is that even if L is not currently as bad as they have concluded, that the occurrence of a crisis of the sort that required mechanical ventilation or CPR, would be either as a result of further deterioration or would lead to further deterioration, such that using CPR or mechanical ventilation would, in effect, put L into the very terminal phases where she could derive no actual benefit from their being used.

These are appallingly difficult decisions for all concerned, although for the parents and the family the difficulty is of a quite different order of magnitude to that faced by the doctors, lawyers and judges for whom this is part of their work, not their family. This is, for the parents and family, perhaps the most difficult decision and the most difficult situation they will confront in their lives. I saw and heard from L's mother yesterday as well as from the mother's brother. Their dignity and their measured approach was extraordinarily impressive. L is fortunate indeed to have them as her parents and family. They have done as much and more than anyone could expect of a parent. They continue to do everything they can to make L's life as long and as happy as it can be.

Ultimately, the responsibility for taking a decision now comes down to me to determine what objectively, and on the evidence before me, I consider to be in L's best interests. To the extent that that is not in line with what her parents assess is best, I will understand if they cannot agree with me. They have their own perfectly proper views and I respect them. To the extent that the Trust doctors do not agree with me, they have their own oaths and ethical code to comply with. I have to act according to the law, doing right without fear or favour, affection or ill will. I have, in reaching my decision, tried to fairly and objectively evaluate the evidence, to take into account and weigh the competing arguments and to reach my own independent assessment of what is now in L's best interests according to the law.

The Background to the Case

Up until around 7 November of this year, the Trust and the parents have been largely in agreement as to L's treatment. Over the course of last weekend and Monday and Tuesday this week, it emerged that there was not an agreement by the parents to the course of action that the Trust proposed in respect of L. As a result, the NHS Trust felt that they needed to apply for a declaration that it was lawful and in L's best interests, not to escalate her treatment to invasive therapy, such as mechanical ventilation or CPR. I do not consider it necessary to explore how that situation arose and what the parents and doctors said or decided in earlier meetings. These most stressful and emotional situations are not ones in which there is any purpose in seeking to ascribe responsibility, still less blame. It is perfectly legitimate and understandable if a parent and clinicians have different views. In many cases such as this they do not, and an agreed plan is put in place, but that does not mean in those few cases where there is not an agreement that someone is wrong.

The Application

The application, I think, was formally issued yesterday but, in fact, came before the court first on Wednesday afternoon. The declarations which were then sought by the Trust were as follows:

a) a declaration pursuant to the inherent jurisdiction of the High Court that it is not in the best interests of L for there to be any escalation in her medical treatment and that it is in her best interests for a palliative care regime to be implemented. Specifically, the Trust seeks declarations that it is not in L's best interests to be subjected to cardio-pulmonary resuscitation, incubation or ventilation.

b) A specific issue order under Section 8 of the Children Act and leave to seek such an order, pursuant Section 10(2)(b) of the Act, determining that there be a ceiling of treatment for L and the implementation of a palliative care regime, including withdrawal of the current provision of assistance with breathing.

After hearing evidence from Dr K by telephone and from Miss Cavanagh by telephone with the parents listening in I declined to make any interim declaration, albeit I determined that it appeared at that stage to be in her best interests for L to be ventilated in the event that anything happened overnight and I joined L and appointed a guardian. At the hearing yesterday, I heard oral evidence from Dr K and from Ms S. I heard submissions, I received skeletons and at about five o' clock yesterday, I delivered a decision on the basis that I would give a fuller judgment today.

The Issue

The issue that lies before me is whether certain forms of medical treatment are in L's best interests or not and thus whether it is lawful, because it is in her best interests, to withhold treatment. The question of withdrawing treatment does not actually arise because the NHS Trust has said they will maintain the current treatment pending final hearing, so to that extent the specific issue order which I just outlined has been superseded by the position taken by Dr K yesterday. The forms of medical treatment in particular have focused on mechanical ventilation and CPR. The parties have all agreed that the application should be listed for final determination on 27 and 28 November, by which time the parents will have had the opportunity to instruct their own independent expert, the parents' legal team will have had the opportunity to consider in detail the medical evidence and notes and the guardian will have been able to see L and her parents and have spoken with the treating team, in particular the nursing staff. Therefore, the issue today is what declarations should I make to cover the interim position. Should I make declarations broadly in the form sought by the NHS Trust; no invasive treatment and just palliative care or should I make the opposite, that it is in L's best interests to have invasive treatment if it is required to sustain her life. I note that Miss Cavanagh's draft declaration requires this but in her submissions she accepted that, as a fall-back, the last sentence which refers to life-sustaining treatment can be deleted.

As I observed in the course of the hearing, the issue of escalation of treatment is not straightforward because escalation could arise in a number of contexts and not necessarily the same considerations would apply in each. It is not a binary choice in that sense and so the best interests decision I have to make will inevitably require some flexibility. I am also acutely conscious that, on the facts of L's case, the order I make in the interim may in fact have the effect of being a final order. If Dr K is correct that L is in the terminal phase and, on balance, likely to face a deterioration crisis in the next week or so, then the decision on invasive treatment will arise before the next hearing. If it does arise, and I accede to the Trust's application then she may not be alive on 27 November. On the other hand, if L is not at that stage, as her parents believe, or if, against Dr K' assessment of the balance of probabilities, and of course that could amount to up to a 49% chance, L may not face such a crisis she may continue much as she is now and has been for the last few weeks.

I note that Dr K has made clear that the Trust will continue to administer the form of treatment they are currently administering, including, for instance increasing her percentage of oxygen upwards from the current 40% if that will assist, administering antibiotics, and continuing with suction. The issue is over escalation to invasive treatment. I also note that Dr K has said that at present he and his colleagues would consider it unethical to provide the invasive treatments which the parents would wish to be carried out. I have been referred to the Royal College of Paediatrics and Child Health guidelines on withholding and withdrawing life-saving treatment in children. Thus, even if I make the declarations as to best interests, which the parents seek, because the court cannot compel a doctor to carry out treatment against his ethical judgment, L will not be subject to invasive treatment by CPR or mechanical ventilation unless something in this judgment causes the NHS Trust to reassess their own judgement.

Given that three other local paediatric intensive care units have all said they would not take L and carry out invasive treatments, unless some other unit is found which is prepared to, then the situation is that even if I did not agree with the Trust's case but with the parents, it might make no difference to L's treatment in practice.

The parties' positions

In this case the case management directions, have been largely agreed. It may be that there has been some adjustment to those over the course of the last 24 hours and so I will finalise those at the end of this judgment.

One of the case management directions covers the instruction of a further expert. I note here that the reason I consider further expert assessment is necessary, within the ordinary meaning given to that term (i.e. somewhere between desirable and imperative) and it being necessary to determine the case justly, is not because of an identified gap in the evidence or a particular need to resolve uncertainty in the current medical evidence, but because this is a life and death case in which the consequences for L and her parents are of the most serious nature and thus it is only just, from her perspective, to seek the fullest possible picture of what will meet her best interests.

I have already set out the terms of the declaration which were initially sought by the NHS trust. The phrasing of the declaration sought by Miss Cavanagh was originally as follows:

'That the parents invite the court to dismiss the application by the Trust, for interim relief and make the declaration as follows: pending the final hearing or until further order, it is lawful and in L's best interest to receive supportive therapies and interventions for her cardio-pulmonary system to include:

a. Incubation

b. Mechanical ventilation

c. Cardio-pulmonary resuscitation,

provided always that the interventions are the least interventions required to sustain her life pending final hearing'.

I have been provided, helpfully, with a redraft of the declarations which the parties consider appropriate in the light of the decision I gave yesterday evening. I shall not set those out in this judgment because it appears that there may be some further consideration to be given to those and I will return to those in the conclusion of the judgment.

The Applicant's Position

The applicant's position is relatively simply stated. They assess L as being in the terminal phase of her condition, that she is deteriorating steadily but seriously and that escalating to mechanical ventilation or CPR is futile because she could receive no actual benefit from either of them for reasons which I shall explain later. They say that the only way that her welfare can be promoted is by a palliative care regime which allows her to continue to experience a measure of interaction with her family and to derive the benefits that that plainly brings to her. Anything else, they say, is futile.

The Guardian

In respect of L herself, because of the lateness that the guardian was appointed, essentially her position on behalf of L is unformed. Miss Julian has not been able to carry out as yet any of the work that she would usually do. The points which Miss Carew particularly focused on and, I think, emphasised for my consideration, were whether the evidence is convincing on whether or not the end stage of the condition has been reached and to consider in particular the nature of L's ability to engage with her family and environment at present and the impact that invasive treatment would have upon that.

The Parents' Position

It is clear that they do not wish to prolong their daughter's suffering but moreover they do not wish to deny her the opportunity for her life to be lived as much and enjoyed as much for as long as she may be destined to be with them. Parents in this appalling situation face really the worst dilemma imaginable for a parent. Do they accept the inevitable death of their child, trusting to the doctors that there is no alternative? Or do they strive with every fibre of their being to prolong their most precious child's life? It is truly every parent's nightmare.

Miss Cavanagh has advocated their position fully and articulately both orally and in writing and in the course of this judgment, I hope I have taken into account what she has said, in particular paragraph 31 of her skeleton argument. She emphasises that the decision is potentially a once and for all decision and that there is a danger at this stage in treating the evidence of the treating doctors as being conclusive, when parents have not been able to challenge it and where there may be an alternative explanation. She in particular pointed out that Dr K had interpreted evidence of L's deterioration over the night of 8/ 9 November as being part of the pattern, but it might, in fact, have been a single event linked to aspiration of food or medicine through a misplaced nasogastric tube. He accepted that was a possibility. He also, she says, said there was no active infection but yesterday said that antibiotics were being administered for therapeutic not prophylactic purposes. Miss Cavanagh said the evidence overall is not such that I could say that there is no benefit to L in undergoing those invasive therapies or that it was futile because if she had not reached the end stage of life then they could support her life and allow her to resume a life close to that which she currently experiences. Miss Cavanagh said that if one applies a truly global approach to best interests, that should incorporate the opportunity for L to see if the Trust's approach is truly the very best option for her.

The Law

An application brought under the inherent jurisdiction in relation to a child requires the court to make its decision based on the child's best interests. Those best interests are the paramount consideration. The classic formulation of the paramount consideration is set out by Lord McDermott in J-v-C [1970] AC 668 at 710-11:

'[the phrase first and paramount] connotes a process whereby, when all the relevant facts, relationships, claims and wishes of parents, risks, choices and other circumstances are taken into account and weighed, the course to be followed will be that which is most in the interests of the child's welfare, as that term has now to be understood. That is the first consideration because it is of first importance and the paramount consideration because it rules upon and determines the course to be followed.'

The word 'welfare' must be taken in its widest sense and its evaluation will change according to developments in society. In Re G (Education: Religious Upbringing) [2012] EWCA Civ 1233, 2013 1 FLR 677, the President reviewed the meaning of welfare. I summarise what I hope are the essential elements of his judgment on this.

a) evaluating a child's best interests involves a welfare appraisal in the widest sense, taking into account where appropriate a wide range of ethical, social, moral, religious, cultural, emotional and welfare considerations, everything that is conducive to a child's welfare and happiness or relates to the child's development and present and future life as a human being, including the child's familial, educational and social environment. The child's social, cultural, ethnic and religious community is potentially relevant and has, where appropriate, to be taken into account. The judge must adopt a holistic approach.

b) Welfare in this context is synonymous with wellbeing and interests.

c) it extends to and embraces everything that relates to the child's development as a human being and to the child's present and future life as a human being;

a) depending on the nature of the application, the judge must consider the child's welfare now, throughout the remainder of the child's minority and into and through adulthood, taking a medium to long-term view and avoiding according excessive weight to what may be short-term or transient problems

Turning to the case law relating to medical treatment, whilst the application of the law requires sensitivity and care, it is now clear and well-established. In Re A (A Child) 2016 EWCA 759, the Court of Appeal said:

''[22] Hence the focus is on whether it is in the patient's best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it.'

'[39] The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be².'

In considering the balancing exercise to be conducted:

"'1. The decision must be objective; not what the judge might make for him or herself, for themselves or a child;

2. Best interest considerations cannot be mathematically weighed and include all considerations, which include (non-exhaustively), medical, emotional, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations;

3. There is considerable weight or a strong presumption for the prolongation of life but it is not absolute;

4. account must be taken of the pain and suffering and quality of life, and the pain and suffering involved in proposed treatment against a recognition that even very severely handicapped people find a quality of life rewarding.

5. Cases are all fact specific."'

In An NHS Trust v MB & Anor [2006] EWHC 507 (Fam), Holman J set out a summary of the guiding principles as follows:

i) As a dispute has arisen between the treating doctors and the parents, and one or now both, parties have 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, is not considered by our law to have reached an age at which she has the autonomy and capacity to make a decision.

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 at this particular time. Is it in THIS patient's best interests to receive this treatment? Best interests are used in the widest sense and include every kind of consideration capable of impacting on the decision. In particular they must include the nature of the medical treatment in question, what it involves and its prospects of success and the short, medium and longer-term outcome, best interests goes far beyond the purely medical interests. They must also include non-exhaustively medical, emotional, social, psychological, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations.

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) 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 best interest lies.

ix) All these cases are very fact specific.

x) The views and opinions of both the doctors and the parents and the child, if able to express them, must be carefully considered and weighed'.

In relation to whether treatment is futile, the Supreme Court decision in Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [2014 AC 591 does not provide a comprehensive definition but I note that treatment may not be futile even though it has no effect upon the underlying disease. It may have other benefits such as easing passing or I would suggest prolonging life for some other specific purpose which is of direct other benefit to the patient. That might be to live life albeit in a way many might find hard or intolerable, but life experienced may be of benefit in itself.

Therefore, a host of matters must all go into the balance when the judge seeks to arrive at his objective assessment of whether this treatment is in this patient's best interests. I, of course, also remind myself, as I have referred to earlier, that the jurisprudence makes clear that a court cannot compel a medical practitioner to administer medical treatment against his professional judgment. That is not to say that the court cannot in its judgment express its own views of what is in the patient's best interests in the hope that the medical professionals will take that into account in their own continuing reassessments of what treatment is in their patient's best interests but, ultimately, it is a matter for the medical professionals.

The Evidence

In assessing and summarising the evidence, medical and otherwise, I have drawn on

the oral evidence of Ms S and her brother Z,

The statement of Dr K, including the timeline and his oral evidence on 8 and 9 November,

the report and email of Dr P,

the DNA results from the Merseyside and Cheshire genetics laboratory,

the letters from the clinical genetics service of the NHS Trust.

I have heard a little about L herself as a two-and-a-half-year-old. Ms S told me that when she was born her eyes were closed for around six weeks and when they opened they found she had cataracts. She had operations at an early stage and had her lenses changed every month. She said they realised after a while that L did not respond to noise and it was then discovered that she was profoundly deaf and that, because of concerns about the shape of her head, scans were carried out and it was discovered that she had cerebellar hyperplasia. This poor young girl also was discovered to have a dislocated hip and had an operation for that. Despite all of this, L was a very smiley baby who, Ms S told me, hardly ever cried. She describes her now as still smiley, that she responds to them, 'She sees us speaking and responds. She puts her hands up and waves in excitement. She plays a game with me and puts her head to the side and smiles'. She said she always does that. She told me that she plays with her Dad's beard. With her grandmother, she likes touching her hands. She plays with her grandad and she particularly likes a game where she laughs if you move your hand suddenly close to her face and away. She told me how she picks up lights and moves them about and when excited she makes noise and laughs.

I have seen pictures and a video of her. She is an adorable little girl; she clearly experiences pleasure from her interactions with those around her and, no doubt, particularly her mum and dad. She also, though, clearly suffers discomfort, distress and pain. She tries to take her oxygen mask off. She is said to be distressed by the suction which is used to clear mucus and secretions from the back of her throat. She can only now tolerate a maximum of 15 minutes without her oxygen mask before it has to be replaced. She cannot lift her head or clear her throat by coughing nor can she swallow. She is fed by a nasogastric tube. Although she has clearly since birth had a degree of disability and neurological deficit and has suffered distress and discomfort, she has also obviously experienced much enjoyment from her life.

Turning to her medical history and building on what I have already said in relation to her mother's description of her, by 6 July 2016 the clinical genetics service of the trust diagnosed a probable syndrome. This is associated with a problem in copper metabolization. Children affected have congenital cataracts, hearing loss, developmental delay and cerebellar hyperplasia, all which the mother told me L had. Her life expectancy was said to be between 22 months and six years and the cause of death is usually through pneumonia, kidney failure and multi-organ failure, all, I think, arising out of neurological deterioration. Subsequent genetic testing at the Merseyside and Cheshire regional molecular genetics laboratory confirmed L had the genetic variant consistent with this syndrome. Subsequent testing of both parents confirmed that they were both carriers. Following the receipt of those genetic tests, the diagnosis of very likely syndrome was confirmed. Ms S told me that she had had discussions with Dr R ( one of the doctors after whom the syndrome is named) himself and although he had not seen notes relating to L and could not be specific, he did say that she had features which were consistent with the syndrome, albeit noted that she had some which were not. Ms S told me that, although the syndrome was proved by genetics, it would give peace of mind for her to know from another doctor that it was because she is fed by nasogastric tube and has the particular problem with secretions and the dislocated hip which were not standard features of the syndrome. She did say that Dr R had told her that he did not think copper treatment would be appropriate.

Between October 2016 and September 2017 there is little information before me about how L was. From what Ms S told me, I believe she was at home with her family. The timeline which seems to be drawn from L's notes picks up the chronology at the beginning of September 2017 when she was admitted to hospital with increased secretions and poor feeding, seizures and fevers. She was discharged with antibiotics but readmitted almost straight away. X-rays confirmed a problem in her lungs and she was started on antibiotics and had suction and physiotherapy. She stabilised for a period but by 29 September had worsened with additional patches in her lungs and increasing oxygen requirements. The administration of oxygen varied but by 2 November she was needing 15 litres per minute overnight. She was struggling to clear secretions and over October the timeline shows periods where the oxygen was reduced and then increased and cardiac issues appearing. She moved on to intravenous antibiotics. On 24 October she had further respiratory worsening and an arrest call was put out. Over the next week there was increasing oxygen requirements and she was struggling to breathe. On 4 November she was admitted to the paediatric intensive care unit and non-invasive ventilation by oxygen mask was commenced. She has been on that since.

The medical views on whether this was the end stage or not,

This was the focus of much of Dr K' evidence but it is also of course covered by Dr P. Dr K said that there are increasing episodes of respiratory deterioration and he said she may have fluctuations caused by specific incidents but the underlying deterioration is significant. He said that over the last month there had been a change. What might have been possible on 4 October when there were extensive discussions about possible options for L, including whether she might benefit from a gastrostomy or tracheotomy were not now feasible. He was clear that the root cause of her problem was not atributable to external infections but to the lack of swallow and cough causing build-up of fluid and swelling in her lungs and this was clearly deteriorating over time.

The parents' view in contrast is that her recent deterioration in September-October is really due to identifiable incidents of her aspirating vomit or food or medicine due to her being unable to cough or turn her head and her not having 24-hour one-on-one care. Dr K said that they had upped the level of treatment to non-invasive ventilation by oxygen/air delivered under pressure by mask, which he described as a halfway house, and that she had improved with this but also that there was not much further one could go because 100% oxygen delivery is damaging in more than small amounts. The trust team and Dr P are unanimous that this is her terminal deterioration and they rely on the following in reaching their conclusion.

First, she has a syndrome, which results in death between two years and six years; they conclude that she has the syndrome in a more severe form.

she has deteriorating neurological function as evidenced by the timeline and the deterioration in particular in her breathing.

her neurological deterioration may also be starting to affect her other organs, including her heart, and they refer to the periods when her heart rate has slowed significantly.

there is no treatment that can be given to reverse or slow the progress.

in relation to her breathing they do not think that secretion is increasing but that her ability to clear it is decreasing and they say that you cannot keep her permanently clear, even with a 24-hour one-on-one nursing team, which might deal with acute events like vomiting but not with continuous events like mucus production. The secretions are causing swelling in the lungs and that is what is the cause of her decreasing ability to breathe which will get progressively worse. Whilst there may have been occasional incidents where she has aspirated food or drugs or vomit into her lungs which might have been responsible for a specific deterioration, the underlying downward progression is present and is worsening.

In particular, Dr K said that this trajectory is based on the information about her deterioration at home prior to her admission to hospital, but also the ten weeks odd that she has been in hospital. He says that last week also shows a steady irreversible downward trend. The sequence he said was clear and that she was approaching the stage where she cannot maintain life any more. He said that there had been huge intervention already, that the team are as sure as they can be that they are in this phase and, as he said, if they escalate treatment from here it may prolong her life but it will make it only a technological end to life. He concluded that he thought on balance they would be in a position where they would need to decide on invasive ventilation within a week.

The parents have a different perception. They see another reason for the problems with her breathing as being due to gaps in her care. When something happens like her vomiting and aspirating that is because she is not under one-to-one 24-hour care, Ms Sn said that she did not think there had been much deterioration in her underlying condition and that she had had worse infections than this and had got better. She said that she thought she had increased secretion which was part of a long-term problem. She says that she does not think that L is in the last stages of life and that maybe she is half-way and she felt she should be resuscitated if necessary. She described how there are improvements where she gets better and picks up again and then deteriorations. She said she wants her to have a chance in life. She has not had the quality of life with her parents that she might. They have had to be nurses and she wants L to have quality of life as a family.

Although the focus of the hearing and the evidence has been primarily on her breathing issues, her cardiac issues have also featured in the evidence. The evidence derives mainly from Dr K. He said that there could be cardiac arrest resulting from two possible areas. Firstly, oxygen reduction as a result of the breathing difficulties, but secondly from other causes. He described how there were the unexplained slowing of her heartrate. His evidence was that he could not precisely ascribe a cause to that but thought that probably it was linked in some way to her neurological deterioration. He thought that, in the context of L's case, the most likely cause of a cardiac arrest and thus the need for CPR would be linked to low oxygen. He said if she arrested in those circumstances, the chances of restarting her heart would be maybe 5% and that you would have to ventilate her afterwards. Although he said it would be completely pointless to let her get to the stage of cardiac arrest through low oxygen and not to have intervened earlier by ventilating to arrest that decline in oxygen levels. In respect of the other cardiac instability he said that it could happen very suddenly. He said he could not put a chance on restarting her heart after such an event yesterday, although on Wednesday I think he said it was somewhere between 5 and 10%. He did say that in this event she would have a high chance of having sustained some brain damage after a cardiac arrest.

The medical consensus in relation to invasive treatment was that everyone who had been consulted was of the view that if L did reach the stage of not being able to breathe without invasive ventilation or if she reached the stage of cardiac arrest requiring CPR that neither should be carried out because the benefits to L of prolonging life were significantly outweighed by the harm associated with carrying them out.

The impact of those invasive treatments on L was explored in some detail. In relation to ventilation the medical view was that ventilation is not a treatment. She will not get any better. She can be kept alive. On a technical basis, one could ventilate for a very long time, albeit complications occur. In particular, in respect of L, her neurological function would be continuing to deteriorate whilst on ventilation which would cause instability in other areas.

The process of applying ventilation would require the insertion of needles for the administration of drugs, for sedation and paralysis and some heavy sedation. She might still feel some discomfort and pain, in particular during the process of suction when a suction tube would be inserted down the breathing tube in order to clear her lungs. That would aggravate the lung tissue causing her to cough. Dr K said that she may still get some comfort, not from smell, sight or hearing but possibly from touch. He said that sedated patients are sedated to the extent that they may sense the presence of somebody. He described it as being in a deep sleep and perhaps feeling somebody touch you but it was transient. He said that in the process of mechanical ventilation the respiratory muscles detrain and so whilst he said a very short period of ventilation to support an operation, or something similar, is not harmful in that way and could be appropriate, as was considered when they were talking about gastrostomy and tracheotomy, prolonged ventilation would actually make L less able to breathe on her own if she were ever to come off ventilation. Because her condition would be deteriorating during the time on ventilation, she would actually be less able to breathe when she came off than before she went on. Ventilation would not be supporting some recovery in another area but merely keeping her alive.

The views of the doctors were that currently she is conscious and can recognise her parents, feel their touch and be comforted by them; she may be able to smell them. If not ventilated and placed on palliative care, she would continue to be able to experience that for a longer period than if she were ventilated. If she were ventilated, she would lose 90% of her current consciousness and even if removed from ventilation would not recover sufficiently before she would die, for her to experience much if any comfort from her parents because if she comes off, she will not be able to breathe unaided. She could be given an oxygen mask but she is likely to die fairly swiftly. He thought there was a 5% chance she could come off successfully but if she did she would be back on again within a couple of days. For him, the fundamental issue was that at the moment she can be conscious but with invasive ventilation she could not be. If she was thus maintained on a palliative regime and non-invasive intervention she would be conscious and experience to the most that she can interaction with her parents and her family. She could be given sedation and pain relief to ease any distress or fear she might experience from the difficulties she will experience as she nears death.

The parents have a different approach to ventilation. They think overall that it is probably better for L to be as fully sedated and unaware of her situation as she dies as is possible in order to minimise any fear or distress that she might feel.

In relation to CPR, Dr K described what it involved. They would try to establish intravenous access possibly by drilling into her bone. She would have medical staff compressing her chest at 100-120 compressions a minute over a half to third of her chest. She might suffer bruising or rib fractures. At the same time, there would be a team dealing with her airway with an airbag and mask. She would be given drugs including adrenaline, the side effects of which Dr K described as horrendous. He said the process would be crowded, noisy, there would be no way her parents or relatives could get anywhere near her, she would not be sedated, she might be unconscious or not. He said the brain can be conscious for one to two minutes after the cessation of blood flow. If her heart slowed more gradually and went to a low cardiac output state, she might lose consciousness more quickly. He said you can give drugs for stimulating the heartrate but there are severe side effects.

Her parents' view is that they would like, Ms S's words were, if she does not pick up we can then say one try - we should try resuscitation and the opportunity to be ventilated. Z said that her parents want to fight for her and give her the best they can. He explained that in Islam, their religion, life is sacred and that we must do all we can to preserve life humanely. Once they have exhausted all avenues and she has been resuscitated and is vegetative, then he said we will know that the time is right. He said that they are rational; they will not leave her; they will rationally come to that conclusion if she has been given every fighting chance. He explained that if this was the end phase, they would prefer invasive because it would mean she would be as fully sedated as possible as that would alleviate her suffering or fear.

My conclusions

I must apply an objective test of what is in L's interests at this particular time. Is it in her interests to receive this treatment? As I said earlier, although the primary area of concern over L's treatment relates to the assessment that the need for ventilation or CPR would arise in the context of the terminal phase of her syndrome, the evidence as it emerged introduced some other possibilities which were not necessarily or clearly linked to the syndrome, for instance a cardiac event not arising from lowered oxygen. That might be due to neurological deterioration but ultimately the cause was not identifiable. In determining what is in L's best interests I consider I have to address the possibility of those unlinked events. In this evaluation, I shall not refer back to all the matters I have discussed already but it should be assumed I am incorporating them where necessary into this analysis.

Her best interests: a holistic analysis.

Terminal phase issues

The first question to address therefore is whether the evidence established that L is more likely than not in the end phase or whether in contrast she has not reached that phase, as the parents believe.

Miss Cavanagh submits that given that the parents have not had the opportunity to test the evidence more or to get another opinion, I should be cautious about reaching a conclusion on this. Whilst I take that into account I do not think I can avoid the issue forensically, given that medically and most importantly on a human level L and her parents may have to face this over the next two weeks. I have to determine the case on the basis of the evidence which is before me and not on speculation. However much force there is in Miss Cavanagh's submissions, both that evidentially the picture is not as clear as it might be and that it might be unfair for the parents to determine it I have to determine it. I cannot hold the ring because I cannot control L's condition.

I conclude that she has entered the terminal phase for the following reasons:

a) she has a syndrome and the last life expectancy in the range 22 months to six years. Hers is said to be of a severe nature and so at the age of 30 months she is within the parameters where the end stage is foreseeable.

b) Her neurological deterioration over recent months at home and in hospital, in particular in terms of her swallow and her increasing difficulty breathing over September and October has seen a steady increase in her need for assistance with breathing.

c) That has now reached the level of her being on 24-hour oxygen mask for the last six days.

d) I understand entirely the parents' view that her deterioration is linked to individual gaps in her care which have led to her aspirating food or medicine. Whilst such events may have contributed to some observed deteriorations, it does not explain the generally downward pattern which can only be attributed to an underlying and progressive worsening of her neurological function which would be consistent with the syndrome. There is not an observed pattern of her suffering an identifiable event, deteriorating and then making a significant recovery. It is a generally downward pattern, albeit with some fluctuation.

e) The fact that she is now on 40% oxygen 24 hours a day, seven days a week means there is only limited scope for increasing those levels over coming days or perhaps weeks before she would reach the need for ventilation.

f) Lastly, all those medical practitioners concerned with her care say that her parents are of the view that she is at the end stage of this syndrome.