England and Wales High Court (Family Division) Decisions

IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION

		Royal Courts of Justice Strand, London, WC2A 2LL
		15th March 2006

Mr Justice Holman:

1. I would like to begin this judgment with three preliminary comments. First and foremost, I am deeply conscious how stressful a case such as this is, above all, obviously, for the parents of the child concerned; but also for the doctors who have made a profound professional judgment which is now held up to intense and, in this case, very public scrutiny. I would like to thank the parents and also the doctors for their courtesy, patience and, so far as is possible in such a case, good humour throughout so stressful a hearing. Secondly, I am very grateful indeed to all the advocates both for their sensitivity and also for their great help to me during what is, obviously, a very difficult case for the court. I hope that, whatever the outcome, each side will feel that their advocate has served them well. Thirdly, since the second day of this hearing I have sat in public with a number of journalists and others present. I am in no doubt that it was appropriate that this case, not just this judgment but almost the whole of the evidence, be heard in public and I am glad that the BBC made their application. I have not personally felt that the presence of the media has been intrusive in the court room; nor, so far as I could observe, has it been oppressive to, or added to the burden upon, the parents, even when giving their evidence. I thank the media for the sensitivity they have shown, at any rate within the court room.

Introduction and overview

2. In this judgment I will call Mr B "the father" and Mrs B "the mother", and refer to them collectively as "the parents". The father is aged 29 and the mother is aged 22. They married in January 2004. The mother has two children from a previous relationship, a boy aged 5 and a girl aged 4, who are treated as if they were the children of this father. The only child of their own marriage is M who was born on 26^th August 2004 and is now aged 18 months. At birth he appeared entirely normal. When he was a few weeks old his parents began to realise he was unwell or not developing normally. In particular he seemed to be very floppy. They took him to a nearby hospital on 16^th October 2004 when he was just 7 weeks old. He has never since left that hospital, which contains within it highly specialist staff and facilities for the treatment and care of babies and children. Very soon indeed the doctors diagnosed, and the diagnosis is undoubted and not in issue, that M suffers from spinal muscular atrophy (SMA).
3. SMA is a congenital condition resulting from an inherited genetic abnormality. Neither parent knew that they were carriers of that abnormality. In all its types or forms SMA may affect about one in every 6,000 people born in this country. However it can vary very considerably indeed in severity. As a result, doctors internationally use a scale to classify severity. In Type O cases the baby is born dead. Amongst survivors at birth, Type 1 is the most, Type 2 a less, and Type 3 the least severe. The type into which a child falls depends upon the age of onset and the degree of functional performance or loss of performance. Type 2 and 3 cases may only manifest a considerable time, perhaps even years, after birth and the degree of impairment may only be relatively limited. Many such people live very full and active lives, and I wish to stress that this case and this judgment simply have nothing to do at all with SMA in its less severe forms. Within Type 1 there is sometimes a further sub-division into tenths, with 1.1 the most severe of all and 1.9 the least severe of the Type 1 case, bordering with, or merging into, Type 2.
4. M was admitted to hospital at 7 weeks, when the condition was at once apparent to, and diagnosed by, specialist doctors. The floppiness was becoming noticeable to his parents even before that. This early onset, coupled with the later course of the disease in M, leads to the diagnosis, which is not in issue, that he has Type 1 SMA, at or around the severity of 1.1, i.e. the most severe of all amongst those who are not born dead. Dr Philip Jardine, a consultant paediatric neurologist who specialises, amongst other matters, in caring for children with SMA, was instructed on behalf of the parents in this case as an expert witness. He has examined M and all his medical records but is not one of the doctors who treat him. He described M as "the most severely affected child with SMA that I have ever personally seen". All the doctors who have given evidence or reported, whether as treating doctors or as expert witnesses, are united in the view that the disease in M is very severe indeed.
5. The condition is degenerative and progressive, i.e. it can only get worse. It may in some sufferers reach a plateau, but it cannot get better. It affects the voluntary muscles (but not the involuntary muscles such as those of the heart) which become progressively weaker and may ultimately cease to work at all. Since the affected muscles include the respiratory muscles, death is, in a true Type 1 case, absolutely inevitable unless, after a certain point (usually only a few months of age, and before the age of one year), artificial ventilation, i.e. breathing, is commenced.
6. In M's case he could initially use many of his muscles in an age-normal way. For instance, he could formerly cry audibly, smile, swallow, breathe and move his limbs, although he never reached the point of being able to sit unaided. Very sadly indeed, he has now reached a point where, save for movement of his eyes and possible slight but barely perceptible movement of his eyebrows, corners of his mouth, thumb and toes or feet, he cannot move at all (whether he can still move even to this extent is in issue and I will refer to the evidence later). He has not been able to breathe unaided at all since July 2005. He has required positive pressure ventilation via an invasive endo-tracheal tube (i.e. a pipe passing through his nostrils and down his windpipe towards his lungs, through which air/oxygen is pumped under pressure) continuously since October 2005. He cannot swallow at all, and has been fed through a gastrostomy tube (i.e. a tube inserted through his tummy into his stomach) continuously ever since November 2004.
7. In addition to suffering SMA, M also suffers or has suffered epileptic fits. Epilepsy is not a recognised symptom or side-effect of SMA. In M's case it may either be an inter-current disease which he just happens to suffer as well; or it may (I stress, may) be a consequence of an episode of hypoxia (i.e. loss of oxygen to the brain) at some stage due to his breathing difficulties. Currently his epilepsy is controlled by drugs and he has not had any seizure for some time. The fact that he suffers epilepsy, but of a kind that can be controlled by drugs, is really irrelevant to the issues in this case except that it may, I stress may, be an indicator that he has suffered some brain damage due to hypoxia.
8. However, brain damage or impairment, or loss of cognitive functions (i.e. the ability of the brain to think or operate in a normal, age-appropriate way) are not normal features of SMA, even of Type 1, unless there happens to have been some event such as hypoxia.
9. I will give a fuller description of aspects of M's current and possible future state and level of functioning later in this judgment. But the dilemma of this case is at once apparent.
10. The NHS Trust, in reality the treating doctors, consider that the quality of life for M is now so low and that the burdens of living are now so great that it is unethical (the word "cruel" has been used) to continue artificially to keep him alive, and that his endo-tracheal tube should be withdrawn. By the use of sedatives, he could have a peaceful, pain free and dignified death, but he would die almost immediately, probably within a few minutes. I stress very strongly indeed that the level of sedation would merely be sufficient to prevent pain and distress. The sedatives would not cause death. He would die from his own inability to breathe. However M is not unconscious, still less in a permanent vegetative state. He is conscious. He is awake most or all of the day, and then sleeps at night. It is probable, and must certainly be assumed, that he continues to see and to hear and to feel touch; to have an awareness of his surroundings and in particular of the people who are most close to him, his family; and to have the normal thoughts and thought processes of a small child of 18 months, with the proviso that because he has never left his hospital bed he has not experienced the same range of stimuli and experiences that a more normal 18 month old might: for instance, he has never, since he was 7 weeks old, been outside. But people talk to him and stories are read to him; he is shown TV and DVDs and music is played to him on CDs; and it must be assumed that he processes all these sights and sounds in his mind like any other child of his age and gains pleasure from them.
11. There have been legal cases and decisions in which approval has been given for the withdrawal of life support from, followed by immediate death of, brain dead or severely brain damaged children or patients. And there have been legal cases and decisions (of which the case of Charlotte Wyatt is an example) in which advance approval has been given not to embark upon (i.e. to withhold) forms of treatment or life support, if later needed, if the condition of a child is very poor. So far as I am aware, no court has yet been asked to approve that, against the will of the child's parents, life support may be withdrawn or discontinued, with the predictable, inevitable and immediate death of a conscious child with sensory awareness and assumed normal cognition and no reliable evidence of any significant brain damage.
12. Of the many reported authorities which have been placed before me, the two which, in different respects, may most nearly approach the circumstances of the present case are Re C (A baby) [1996] 2 FLR 43 decided by Sir Stephen Brown P on 3^rd April 1996, and Re C (A minor) (Medical treatment) [1998] Lloyd's Law Reports Medical, page1, decided by Sir Stephen Brown P on 18^th November 1997. In the first case he did make an order giving approval and permission for artificial ventilation to be discontinued to a baby of 3 months, which would result (as in the present case) in immediate death. But in that case, as a result of meningitis, the baby had suffered "a serious degree of brain damage" and was "subjected to repeated convulsions due to the brain damage". She had what was described as "cerebral blindness" and could not see or hear in any normal sense of those terms. Sir Stephen said "It is almost a living death. She is not in a coma as medically defined; she has a very low awareness of anything, if at all". I could not use that description of M. Further, in that case the parents themselves agreed with the decision (see page 45 C).
13. In the second case, the child concerned, like M, suffered from Type 1 SMA. She, like M, was conscious. Further, she was able to recognise her parents and to smile. However, unlike M, she was only on intermittent positive pressure ventilation. The doctors considered, and the parents agreed, that she should be weaned off that ventilation before she became fully dependant upon it. The issue was whether, if or when she suffered a respiratory arrest, positive pressure ventilation should be restarted. The parents sought an order that it should be, but Sir Stephen Brown P declined to grant one, in part because of the well established principle that a court will not order a doctor to undertake a course of treatment which the doctor is unwilling to do (see page 5, left hand column); but also because Sir Stephen expressly held that it was in the best interests of the child not later to reimpose ventilation if needed (page 5, right hand column). Since the doctors considered that a respiratory arrest would be inevitable (see page 3) the case is very close to the present one. But it did not involve or contemplate the immediate death of the conscious child; and the actual withdrawal of intermittent ventilation was agreed to, and supported, by the parents.

The legal and ethical framework

14. There is a well established procedure whereby in disputed cases a hospital or NHS Trust can apply to the High Court for a declaration. In accordance with that procedure, the NHS Trust in this case applied in December 2005 for a declaration: 1) (as is obvious) that M lacks the capacity to make decisions with regard to his future medical treatment; and 2) that it shall be lawful, notwithstanding his parents' refusal to consent, and in M's best interests for [the medical staff] (a) to withdraw all forms of ventilation from him, and (b) generally to furnish such treatment by way of pain relief or sedation and nursing care as may be appropriate to ensure M suffers the least distress and pain and retains the greatest dignity [viz. at the time and in the manner of his dying].
15. More recently, just before the hearing began, the parents issued a cross-application in which they seek a declaration that it shall be lawful and in M's best interests for a tracheostomy to be performed to enable long term ventilation to be carried out. That application reflects "Option 3" in the range of treatment "options" to which I will later refer.
16. The case concerns in its widest sense "the upbringing of a child" and accordingly section 1 of the Children Act 1989 provides the statutory test that "the child's welfare shall be the court's paramount consideration." But the case also concerns someone who is a patient; and when what is ultimately in issue is when and by what processes the child/patient should be allowed to die, the case concerns "upbringing" in a very special and intense sense, and that short statutory test needs some elaboration. But the law around this topic is now well established and tolerably clear and can, I believe, be shortly stated in the following propositions without the need for copious reference to authority. The essence of these propositions lies in the "intellectual milestones" to which the Court of Appeal referred in paragraph 87 of the reserved judgment of the court in Wyatt v Portsmouth Hospital NHS Trust [2005] EWCA Civ 1181.

i) As a dispute has arisen between the treating doctors and the parents, and one, and 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 he is a child, lacks the capacity to make a decision for himself.

iii) I am not deciding what decision I might make for myself if I was, hypothetically, in the situation of the patient; nor for a child of my own if in that situation; nor whether the respective decisions of the doctors on the one hand or the parents on the other are reasonable decisions.

iv) The matter must be decided by the application of an objective approach or test.

v) That test is the best interests of the patient. Best interests are used in the widest sense and include every kind of consideration capable of impacting on the decision. These include, non-exhaustively, medical, emotional, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations.

vi) It is impossible to weigh such considerations mathematically, but the court must do the best it can to balance all the conflicting considerations in a particular case and see where the final balance of the best interests lies.

vii) Considerable weight (Lord Donaldson of Lymington MR referred to "a very strong presumption") must be attached to the prolongation of life because the individual human instinct and desire to survive is strong and must be presumed to be strong in the patient. But it is not absolute, nor necessarily decisive; and may be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering or other burdens of living are sufficiently great.

viii) These considerations remain well expressed in the words as relatively long ago now as 1991 of Lord Donaldson of Lymington in Re J (A minor) (wardship: medical treatment) [1991] Fam 33 at page 46 where he said:

"There is without doubt a very strong presumption in favour of a course of action which will prolong life, but … it is not irrebuttable … Account has to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account has also to be taken of the pain and suffering involved in the proposed treatment… We know that the instinct and desire for survival is very strong. We all believe in and assert the sanctity of human life …. Even very severely handicapped people find a quality of life rewarding which to the unhandicapped may seem manifestly intolerable. People have an amazing adaptability. But in the end there will be cases in which the answer must be that it is not in the interests of the child to subject it to treatment which will cause it increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child's, and mankind's desire to survive."

ix) All these cases are very fact specific, i.e. they depend entirely on the facts of the individual case.

x) The views and opinions of both the doctors and the parents must be carefully considered. Where, as in this case, the parents spend a great deal of time with their child, their views may have particular value because they know the patient and how he reacts so well; although the court needs to be mindful that the views of any parents may, very understandably, be coloured by their own emotion or sentiment. It is important to stress that the reference is to the views and opinions of the parents. Their own wishes, however understandable in human terms, are wholly irrelevant to consideration of the objective best interests of the child save to the extent in any given case that they may illuminate the quality and value to the child of the child/parent relationship.

17. I avoid reference to the concept of "intolerability". It seems to me that it all depends on what one means by "intolerable" and that use of that word really expresses a conclusion rather than provides a test. If it is correct to say, or once it has been concluded, that life is literally "intolerable", then it is hard to see in what circumstances it should be artificially prolonged. If, conversely, it is "tolerable" then it is hard to see in what circumstances it should be permitted, avoidably, to end. In any event the most recent word from the Court of Appeal on this concept of "intolerability" is that contained within the reserved judgment of the court in Wyatt v Portsmouth Hospital NHS Trust [2005] EWCA Civ 1181 at paragraphs 76 and 91 where they say that the concept of "intolerable to the child" should not be seen as gloss on, much less a supplementary test to, best interests. Although they continue by saying that the concept is a "valuable guide in the search for best interests in this kind of case", I doubt my own intellectual capacity on the one hand to exclude it even as a "gloss on", much less supplementary test to, best interests; and yet on the other hand treat it as a "valuable guide". If it means no more than that the conclusion that it is in the best interests of the patient to be allowed to die should only be reached in a clear and strong case, then that is already part of the intellectual milestones and part of my own proposition 7 above, and the quoted passage from Lord Donaldson of Lymington.
18. Because of the factual situation in the present case there is one area of law to which I must make fuller reference, namely the correct approach to the factual distinction between "withholding" and "withdrawal" or discontinuance of life support. This required to be directly considered in the case of Anthony Bland, Airedale NHS Trust v Bland [1993] AC 789 where the issue was whether forms of life support could lawfully cease to be supplied to a patient in a permanent vegetative state. In a speech with which Lord Keith of Kinkel and Lord Lowry expressly agreed, Lord Goff of Chieveley said at page 866:

"I agree [with Professor Glanville Williams] that the doctor's conduct in discontinuing life support can properly be categorised as an omission. It is true it may be difficult to describe what the doctor actually does as an omission, for example where he takes some positive step to bring the life support to an end. But discontinuation of life support is, for present purposes, no different from not initiating it in the first place. In each case the doctor is simply allowing his patient to die in the sense that he is desisting from taking a step which might, in certain circumstances, prevent his patient from dying as a result of his pre-existing condition …."

At page 867 Lord Goff said:

"…..where a patient is brought into hospital in such a condition that, without the benefit of a life support system, he will not continue to live, the decision has to be made whether or not to give him that benefit, if available. No doubt his best interests will ordinarily require that he should be placed on a life support system as soon as necessary, if only to make an accurate assessment of his condition and a prognosis for the future. But if he neither recovers sufficiently to be taken off it nor dies, the question will ultimately arise whether he should be kept on it indefinitely. As I see it, that question …. can only be answered by reference to the best interests of the patient himself, having regard to the established medical practice."

19. In the same case, Lord Lowry said at page 875:

" I do not believe that there is a valid legal distinction between the omission to treat a patient and the abandonment of treatment which has been commenced, since to recognise such a distinction could quite illogically confer on a doctor who had refained from treatment an immunity which did not benefit a doctor who had embarked on treatment in order to see whether it might help the patient and had abandoned the treatment when it was seen not to do so."

20. These passages establish and make quite clear, in my view, that there is no legal distinction between withholding or withdrawing life support and that the best interests test applies equally to both situations.
21. The ethics of withholding or withdrawing life support are discussed in an important publication by the Royal College of Paediatrics and Child Health (of which I mention that the two principal treating consultants in this case are respectively a Fellow and a Member): "Withholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice" (Second Edition) May 2004. As its title indicates, that publication treats "withholding" and "withdrawing" similarly, and it states in terms at paragraph 2.1 that "Ethically the withholding and the withdrawal of life sustaining treatment are equivalent but emotionally they are sometimes poles apart … In acute situations it is always necessary to give life-sustaining treatment first and to review this when enough information is available…"
22. At paragraph 2.3.2.1 under a heading "Axioms on which to base practice" the document states as a general axiom that:

"There is no significant ethical difference between withdrawing (stopping) and withholding treatments, given the same ethical objective."

23. Whilst that publication is not authoritative as to the law, those passages from so eminent a source satisfy me that ethically there is indeed no difference or distinction between withholding or withdrawing life support.
24. I wish to stress and make clear, however, that I myself am not concerned with any ethical issues which may surround this case. My task, difficult enough in itself, is to decide, and only to decide, where the objective balance of the best interests of M lies. If I decide that it is not in his overall best interests to continue with a given form of treatment, in particular with continuous pressure ventilation, then I must say so; and it will follow as a matter of law (and I will declare) that it is lawful to withdraw or withhold that form of treatment. The ethical decision whether actually to withdraw or withhold it must be made by the doctors concerned. Judges are neither qualified to make, nor required, nor entitled to make ethical judgments or decisions.

The medical evidence

25. I heard oral evidence from the two key consultants under whose care M has been ever since his admission: a consultant in paediatric intensive care, Dr S (whom I will call Dr S I), and a consultant paediatric neurologist (whom I will call Dr S N). I wish to pay great tribute to each of these doctors. It is obvious that each has cared for and treated M with great skill and the utmost professional commitment and concern. It is obvious from letters they have written to, and discussions they have had with, the parents over many months that they have tried with sensitivity and patience to find consensus as to the treatment plan. It is clear that each has thought very carefully about the ethics of the treatment currently given to M, and each now supports, and in effect makes, this application after a long period during which they have increasingly felt that continuation of ventilation is not justifiable. As well as giving evidence, each, and in particular Dr S N, has remained in court throughout all or most of the hearing.
26. In addition to the evidence of these two doctors, it is very important to record that five other consultants in paediatric intensive care, two other consultant paediatric neurologists, and one consultant paediatric anaesthetist – i.e. eight doctors of consultant status – who are all part of the overall clinical team caring for M within the intensive care unit, have made statements. The statements are all in indentical terms, but each has signed it. Each expresses agreement with the more detailed statements of Dr S I and Dr S N. Each says that M "already has an intolerably poor quality of life, and this will only get worse…" The common statement refers to some of the sources of discomfort, distress and pain to M and concludes "Although ventilation is keeping him alive, it is not restoring his health. We believe that every day that we continue with his ventilation is adding to his distress. The treatments currently provided for M are futile and sadly will not change the outcome of his illness." I do comment that within the common statement there is no reference to, or recognition of, any possible current pleasure or benefit to M from his life.
27. There is also an important statement of a senior sister, whom I will call Sister K, who is a team leader on the intensive care unit where M is. She describes the one-to-one nursing care which is given to M round the clock, 24 hours a day and 7 days a week. Again, I wish to pay a great tribute to all the nursing staff and other medical staff such as physiotherapists who care for him with great devotion and skill, and without whose care he could not have survived so long. I will refer later to aspects of her statement in relation to M's current state, but Sister K records the views of the nursing staff as follows:

"The nurses are mixed in their view about M's long term care. The more inexperienced ones, that provide most of his care, want the status quo to remain. In referring to 'inexperienced nurses' I am referring to those members of the nursing team who have not worked on PICU for long …… they would not therefore be aware of SMA and the long term implications for the child… The other more experienced nurses, who also provide some care for M, feel the opposite … They have had experience of children similar to M… and will have significant understanding of the pain and discomfort caused by various medical interventions. In addition they will be very much aware about the future prognosis and outlook …"

28. As well as all the above primary evidence from the treating doctors and nursing staff, I have read statements or reports from the following doctors who have been instructed as "expert witnesses" in the case: Dr Imelda Hughes, a consultant paediatric neurologist with a special interest in neuromuscular disease (which SMA is), and Dr Colin Wallis, a consultant respiratory paediatrician, both of whom were instructed on behalf of the NHS Trust and also both gave oral evidence; and from Dr Philip Jardine, a consultant paediatric neurologist, and Dr Anita Simonds, a consultant in respiratory medicine, who were each instructed on behalf of the parents and whose reports form part of the evidence in this case but who were not called to give oral evidence.
29. I mention that the use of the term "expert" witness does not mean in any way at all that these doctors are more expert than Dr S I or Dr S N; it simply means that they are not the treating doctors. But all have examined M, with the exception of Dr Wallis. The four expert witnesses come from a range of well known and very specialist children's hospitals or units, and from different parts of the country. Each without any or any significant reservation fully supports and agrees with Dr S I and Dr S N as to diagnosis, prognosis, and current and future pain and distress to M, and that his ventilation should now be withdrawn. Following a joint meeting in early February 2006, Dr S I, Dr S N and Drs Wallis, Hughes, Jardine and Simonds have all signed an agreed Joint Expert Report in which they all say that it is in the best interests of M that the ventilation be withdrawn and he be allowed to die, probably "very quickly".
30. There is thus a very formidable body of medical evidence of very high quality in this case which is all, without exception, to the same effect. Although there is much detail in the various individual reports and also in the considerable oral evidence which I heard, I believe that the summary under the heading "Present Condition", and one or two further quotes from the first part of the Joint Expert Report gives a fair overall summary of the medical opinion.

"Present Condition

M has lived for a long time for a child with his condition (type 1 spinal muscular atrophy). The main reason for this is the very high standard of care he has received from his family and hospital staff. The experts believe that the continuous bowel antibiotics that he has been receiving may have played an important role in his long term survival. He is not in a persistent vegetative state. He is able to make some very limited voluntary responses to his environment. It is not possible to give an opinion about his cognitive function as this is impossible to assess. His responses vary both during the day and from day to day. These minor changes are not clinically significant and do not change the conclusions of our report. Most children with his condition would have normal cognitive function. Four of the experts had reviewed a recent video, which documents some movements in M. The presence or absence of these movements does not change our conclusions below. These movements are not a useful prognostic indicator for the long term and do not alter the long term natural history of the condition. It is very difficult to assess how much discomfort or distress M experiences. It is inevitable that some interventions particularly blood sampling, deep endotracheal suction, physiotherapy and bagging are uncomfortable for him. An assessment of his quality of life is very difficult. Two of the experts noted that assessment of quality of life in people with neuromuscular disorders by health professionals is often pessimistic…

We do not believe that medication (either anticonvulsant medication or analgesic and sedative medication) is impairing his awareness, responsiveness or motor abilities.

We were agreed that M's prognosis is very poor and that death is inevitable. We were agreed that a management choice should not prolong any distress and if possible be acceptable to the family."

Under the heading of "option 4", to which I will later refer, but which is the option of withdrawing ventilation and allowing him to die, the Joint Expert Report says "The experts all agreed that if only M's interests were being considered then this option would be in his best interests."

31. From the oral evidence as a whole the following important points emerge or are stressed. Even with the continuation of the present treatment death is inevitable. M could survive even for a small number of years or could die suddenly and soon. Dr Wallis considered he would die within weeks or months and that survival even for a year is extremely unlikely. However he has not actually examined M, and Dr S I and Dr S N each feel, I think, that he could actually survive longer. His condition has deteriorated considerably in the last 6 months or so. There has been a marked decline between his condition and responsiveness when Dr Hughes saw him on 20^th September 2005 and when Dr Jardine did on 26^th January 2006. His condition must and will continue to deteriorate. He will become increasingly affected by painful contractures of his joints and, although it has not really commenced yet, by scoliosis (i.e. curvature of the spine). His autonomic system will dysfunction and there will be problems of constipation or diarrohea. Any faint movements he can still make must and will ultimately cease altogether. This means that even if fully sensate and of full cognitive functioning, he will then simply not be able to communicate at all. Although there have been wonderful advances in enabling paralysed people to communicate, Dr Hughes said that those advances still require the patient to be able to move something, if only a controlled flicker of an eyelid. She said that however long M may live and with any technological advances that one may foresee, there is no way he will ever be able to communicate anything even if, as she assumes, his brain is functioning normally. She did say, however, that he may be able to absorb and learn language, and absorb and process the thoughts and ideas that language communicates, including, of course, stories and poems. Already he cannot make any sounds. Currently his eyebrows can just form a frown but ultimately he will become completely motionless. Eventually all eye movement will cease and, indeed, his eyes will remain closed. Apart from further severely limiting his quality of life, this means that he will be unable to convey whether he is suffering pain or discomfort, or alternatively experiencing any pleasure. It also means that it is already impossible to assess his degree of cognition or, indeed, whether he has any brain damage. MRI scans have not indicated any such damage but the possibility exists that he does have some brain damage not detectable on a scan. But it cannot be tested by any other test based on recognition or response. Although most children with SMA Type 1 have normal cognitive function, Dr Hughes has an impression, but it is only an impression, that he does or may have some loss of cognition. She said, however, that as cognition is usually normal in SMA patients the assumption must be that it is normal in M. She said there is no objective evidence to support that it is normal, but none to support that it is not normal. Dr S N said, similarly, that M has not got the cognitive features usually seen in a child with SMA, but it is impossible to assess because he has no ability to respond. In the view of Dr S N, the worst possible scenario is in fact if he does have normal cognitive function and is aware of everything that is happening to him (i.e. all the medical procedures). Dr S N said that to him that is quite a horrible thought.
32. All the doctors who gave evidence stressed that the medical procedures to which he is necessarily exposed inevitably cause discomfort, distress or pain depending on the procedure. The doctors know that these procedures cause discomfort, distress or pain from their observation and experience of other children who require similar treatments but who have not lost the power to communicate. In the case of M personally, they observe (and indeed the parents observe and accept) reactions of distress or pain in that his heart rate, which is constantly monitored, may suddenly rise, or his eyebrows still just perceptibly frown, or he produces tears. Procedures producing discomfort include the need for regular suctioning of his endo-tracheal tube several times a day, bagging with an oxygen mask when the tube is changed, and the physiotherapy which is necessary to maintain his general health and to loosen secretions. When deep suctioning is required, with the suction tube going deeper towards his lungs, the discomfort is likely to be greater and at a level of true pain although it only lasts for minutes and the pain does not persist after the deep suctioning stops. If he needs blood tests or the insertion of intravenous lines to administer certain antibiotics, then there is pain from the needle, particularly as it is very hard in his case to find a vein and often needs several attempts. Additionally, Dr Hughes made the important point that he may be in almost continuous discomfort from inability to move or wriggle his body in bed, nor to ask for help when he wishes to be turned or moved. He is, of course, frequently turned and moved as a matter of nursing routine, but Dr Hughes explained how there may be many times when he is uncomfortable and wishes to be moved but is helpless to do anything about it.
33. The doctors stress that these are cumulative sources of distress, discomfort or pain.
34. Each of Dr S I and Dr S N had seen M very recently when they gave oral evidence. Dr S I said that he can probably hear. He can no longer open his eyes fully and effectively, and is developing a ptosis, but Dr S I is convinced he can still see because he will follow movements with his eye although his eye movements are now irregular. He can probably feel stroking and touch. Dr S I said that the main issue is that it is so difficult to know how he feels. If he is aware and able to appreciate his surroundings, it is very hard to know whether he is comfortable or in distress or pain. He may be comfortable and happy or he may be uncomfortable and unhappy without us knowing about it. That, he said, is precisely the dilemma we are faced with. His own feeling is, however, that M is unhappy and is distressed although it is very difficult to answer that. But before he lost all facial movement there were times, as indeed are recorded in the medical notes, when Dr S I felt he was profoundly unhappy and distressed. Dr S I, who is an intensivist, considers that M is now dying and that by continuing with ventilation we are prolonging the dying process but in an uncontrolled manner.
35. Dr S N said his eyes are now about half open. His eyes do still follow movement, that was clear. But his eye movements are irregular and it is unclear whether he fixates or focuses. He has no reason to believe that M cannot hear or feel touch, although Dr S N cannot say whether he feels it as a pleasure. He himself has not recently observed any movement in M's thumbs but is aware that he does move them. He briefly disconnected the ventilator on Sunday 5^th March but had to reconnect it after 15 seconds because the breathing effort was so weak. From this he concludes that if the ventilator is withdrawn M will die very rapidly.
36. Dr S N said that he cannot say that M is not at times getting pleasure out of life but his biggest worry is that we may wrongly assume that he is settled and content when he is not.
37. Dr S N stressed how he has felt for a considerable time that he is acting unethically in continuing to subject M to discomfort and pain and that he would personally find it very difficult to continue much longer to do so.
38. The nursing evidence from Sister K is that:

"M has no facial expression. His eyes can move when he is awake and sometimes it is possible to tell if he is responding to stimuli because of his eye movement [although] it is very difficult to see his eyes move … Some staff believe they can tell if M recognises them, through his eye movements, whilst some staff can't… It is difficult to assess M's pain levels, although some nurses 'get a feeling' about what he might be feeling when they are in the room with him ….. [or] sometimes through tears or fluctuations in heart rate."

39. Sister K says that she has "seen a marked decline in M's condition since he has been in PICU … He used to be able to move his arms and legs and had facial expressions, but this has gone now, other than a very slight thumb movement sometimes."

The parents

40. Both parents have made written statements, both have attended and listened with great attention throughout the hearing, and both gave oral evidence with dignity. As part of their evidence they gave me a number of recent photographs which convey to me a general impression of M's appearance (his eyes are indeed clearly about "half open"), his very clean general state and (as doctors have said) healthy skin; and clearly show the endo-tracheal tube. I also watched a video with a number of short sections or clips. From this I can clearly see that on some occasions his thumbs do, ever so slightly but perceptibly, move, and that on some occasions his feet do, very slightly, wiggle or move in apparent response to his mother's command to "do a big one".
41. Doctors S I and S N who have seen the video say they themselves have not recently seen any such movements; but they agree they are visible in the video, and they cannot explain them. (I mention at this point that although no party asked, or even hinted for consideration, that I should personally go and see M, I did give that possibility continuous and careful consideration during the whole of the hearing. I decided, however, that I would not do so in the absence of any request because I feel that I have a great deal of information about M. I obviously could only observe him for a finite period of time and there was a risk of obtaining a distorted impression. Rather, I should decide the case on the evidence that has been presented to me, in which I include the video.)
42. The mother gave her evidence first. She has clearly informed herself quite considerably about M's condition and has a good general knowledge and understanding of the medical procedures to which he is exposed. Almost every day she is at the hospital and with him from about 12 noon until about 8.45 pm – i.e. over 8 hours, and longer at weekends. Her sincerity and her devotion to M is not in doubt and is praised by the medical staff. I have to caution myself that she cannot, because of her relationship, be objective; but it is the fact that no one other person has spent so much time with M and been as intimate in their contact with him. I do consider that she is, in various respects, very understandably and humanly, deluding herself. But I considered her to be entirely honest in her evidence; and even if not wholly objectively reliable, considerable weight has to be attached to her account as a source of evidence.
43. The mother says that M does indeed show pain or distress by frowns and by tears. She says that he similarly displays pleasure to her by his eyebrows going up slightly rather than going down, and she can see the merest movement upwards of the side of his lips as if he is trying to smile. She says that his eyes fix on her and will follow her until, because he cannot move his head, he cannot see her any more. She says that when his brother and sister are there, which they very frequently are, he shows recognition of them and his eyebrows and corner of his mouth will move slightly upwards. If she touches his thumb it will move. She is convinced that he sees, hears and takes in certain TV and DVD programmes and music on CDs. (The doctors themselves all agree he can most probably hear.) He has his favourites and will turn his eyes away and nod off if bored. His brother and sister sing to him and play Round and Round the Garden to which, she believes, he reacts positively and with pleasure.
44. The mother agrees and accepts that some procedures cause him discomfort and pain but clearly feels that some of the medical evidence about pain is exaggerated.
45. The mother believes that in recent weeks he has actually improved and that he now has some capacity to push up his secretions from his chest to his mouth. So she thinks there may be very early signs of recovering some movement and having a better quality of life. I regret to have to say that the medical evidence is that improvement is simply medically impossible and that in this she is deluding herself.
46. The mother believes also that if M can be kept alive long enough there may be a cure or treatment for the underlying SMA itself. In that, too, I regret that she is deluding herself. Pharmaceutical companies are indeed working on treatments, but on the evidence available to me, mainly from Dr Hughes, any available drug treatment is still years away, and the very best it might hope to achieve in the foreseeable future is to arrest further deterioration in a patient but not restore lost function. So, very sadly, any future drug treatment will be far too late for M.
47. The father also gave oral evidence. He is a thoughtful and gentle man, who has also informed himself about M's condition and who gave his evidence with sincerity and candour. His wife would want the doctors to resort to electrical treatment to try to restart M's heart if it stops. The father candidly said that he would not. The father also visits frequently and for long periods. He, too, said that he can see movements to the eyebrows which indicate pain or pleasure and that M's eyes fix and follow. He said that the moment he walks in and says "who's here?" M hears it and fixes his eyes. He likes being touched on this cheek but frowns if you touch his head. The father gave similar evidence to the mother in relation to M watching television and reacting to his brother and, the father said, especially his sister.
48. Like the mother, he accepts that M experiences distress and some pain from the medical interventions but, like her, considers in general that the doctors exaggerate it.
49. The father is a practising Muslim. He said in his written statement : "One of my beliefs is that it is not right for people to choose whether another person should live or die." During the course of his oral evidence he said that he believes no one knows what time someone is born to die. No one knows exactly when the God who gives life takes it. We all have a certain time to die and should leave the decision to God.
50. This case concerns a child who must himself be incapable, by reason of his age, of any religious belief. An objective balancing of his own best interests cannot be affected by whether a parent happens to adhere to one particular belief, or another, or none. I have the utmost respect for the father's religious faith and belief, and for the faith of Islam which he practises and professes. But I regard it as irrelevant to the decision which I have to take and I do not take it into account at all.

The options

51. The Joint Expert Report identified five "management choices for the future" or "options". They are, in summary: Option 1, extubate M and return, or try to return, to non-invasive ventilation. Option 2, continue broadly along the present management plan, including ventilation by endo-tracheal tube. Option 3, perform a tracheostomy and continue long term ventilation by that route. Option 4, extubate M (i.e. remove the endo-tracheal tube) and provide palliative end-of-life care. Option 5, continue to ventilate him through the endo-tracheal tube, but discontinue some of the more invasive procedures including deep suction down the tube, replacement of the tube, physiotherapy and the giving of antibiotics
52. Some of the options, in particular 2 and 5, are capable of further sub-division or alternatives.
53. All of the experts agree, and so do the parents, that option 1 simply is not an option at all. He would be unlikely to survive long on non-invasive ventilation and it would merely lead to an unplanned time of death, probably accompanied by distressing symptoms which it would be difficult to alleviate and a very distressing death.
54. Options 2 and 3 are essentially both options which contemplate prolonging life as long as medically possible. If that is the outcome, then the parents would greatly prefer option 3, although it would require an operation under general anaesthetic with the attendant risks and discomfort or pain. They believe that performing a tracheostomy might make it possible for M to live at home or at least have some outings around the hospital grounds. So it is to option 3 that their cross-application specifically relates. In my view and that of the doctors, it is completely unrealistic to imagine that M might ever go home or, probably, even go into the grounds. Before he went home the family would have to be rehoused, an intensive care unit would effectively have to be created in the new home, and a package of intensive and continuous staff would have to be made available and financed. I am afraid that simply is not going to happen in his lifetime. Even a short journey or outing in the hospital grounds would require the presence not only of nurses but of a doctor which is unlikely to be available. The doctors oppose the tracheostomy because they consider in any event that long term ventilation should be discontinued. If, however, it is continued long term, then Drs S I and S N themselves incline to feel that the ventilation might better be by tracheostomy rather than long term endo-tracheal tube. In my view, however, option 3 and the possibility of a tracheostomy does not fall for direct consideration by me and would occur, if it occurs at all, following further discussions between the doctors (including surgical staff) and the parents in the event that I reject the application of the NHS Trust. Further, if I do reject the application of the Trust, the doctors may, as I have indicated, agree to perform a tracheostomy, in which case one may lawfully be done since the parents, who have parental responsibility, would consent to it. In that event, any declaration by me would be unnecessary and superfluous. Alternatively, the doctors may not agree to perform a tracheostomy, in which case any declaration by me might appear to be an attempt to do what I have no right or power to do, namely to require doctors to carry out a positive medical intervention against their own judgment and will. For those reasons I will in any event dismiss the cross-application issued by the parents.
55. Option 4 is the outcome that the Trust and the doctors seek. The endo-tracheal tube would be gently withdrawn at a time and at a place (which might include the parents' home or a hospice) which was carefully planned and agreed. Appropriate sedation would be given to dull pain and distress, but not, I stress not, of itself to cause death; and M would die rapidly but peacefully, disconnected from all equipment, and in the arms of his parents if they wish. The evidence of Dr S I in particular satisfied me of the experience which the staff have, and the sensitivity and care they would give, to enable M to have a peaceful and dignified death, or as Dr S I called it "a good death", which the doctors regard as a real benefit to M of choosing that option.
56. If option 2 is not continued and the life of M not prolonged as long as possible, then the parents would prefer option 5 over option 4. I feel, however, that option 5 has little to commend it from the point of view of M's best interests, and it borders on being, or may in practice become, unethical; for it would involve continuing with invasive ventilation but withholding forms of treatment and care (in particular deep suctioning and physiotherapy) that really necessarily go with it. He would probably die within days or weeks, perhaps from a blocked tube. The time of death would be unpredictable. The statement of Sister K indicates that nursing staff might find it very difficult to follow that option. It is clear to me that if either option 4 or 5 are to be followed (which each contemplate an early death) then it is only 4, not 5, which is in his best interests and medically and ethically acceptable. Aspects of option 5, such as not administering intravenous antibiotics or continuing blood sampling, might be added as variants or a qualification to option 2.
57. The essential choice is thus, in my view, between option 2 (with or without some variants), and the prolongation of life; or option 4, and an early and dignified death.

Weighing the benefits and burdens

58. The test is one of best interests, and the task of the court is to balance all the factors. The Court of Appeal have suggested that the best and safest way of reliably doing this is to draw up a list on which are specifically identified, on the one hand, the benefits or advantages and, on the other hand, the burdens or disadvantages of continuing or discontinuing the treatment in question. At a relatively early stage of this hearing I therefore asked each advocate to draw up and submit to me their respective proposed lists, and they kindly did so. It has been an enormously useful discipline, both during evidence (when the lists were used as a kind of check list), the argument and now as I reach my decision and prepare this judgment. I would like, as an aside, to suggest that in similar cases each party should prepare such lists as part of their preparation of the case. The lists can always be added to, or amended, in the light of the evidence, as happened in this case.
59. The lists vary, in part because of differing degrees of sub-division of a topic or item; but there is much overlap, the real dispute being as to how much weight to attach to a particular item. I record, however, that even at the end of the hearing the list prepared by Mr Huw Lloyd on behalf of the Trust (and with, I believe, input from Dr S I and/or Dr S N) contains under the heading "Benefit" only one item "Preservation of life". Whilst that may be said to be all embracing, it does not recognise or identify any specific benefit that M may be getting from his life, though the "Disbenefits" are listed with considerable specific detail.
60. The most comprehensive list in both columns is that prepared by Miss Caroline Harry Thomas on behalf of the guardian and (with her kind permission) I now reproduce it, both as it is the most comprehensive list and as it is put forward on behalf of the child himself. Most of the items have a resonance in what I have already said in different parts of this judgment. There is some further detail, which is all founded in evidence but which I have not lengthened the judgment by previously recording; but which is important and which I do take into account.

GUARDIAN'S "BALANCE SHEET" 8.3.2006

The columns below deal with the benefits and burdens for MB, associated with ventilatory support continuing.

BENEFITS	BURDENS
• MB can see during those periods when he can open his eyes (but see note regarding visual clarity under burdens). • Possible/probable recognition of his parents and siblings & some pleasure/comfort in their presence (extent of ability to experience pleasure uncertain). • Possible/probable recognition of those caring for him & some pleasure/comfort in their presence (extent of his ability to experience pleasure uncertain). • Possibly/probably MB derives some comfort /pleasure from Barney the Dinosaur/Teddy. • He has the sensation of touch and can feel gentle strokes and his hand being held. • He can hear and it should be assumed for balancing purposes that MB may have the ability to enjoy listening to voices/a story/music now or in the future.	• MB cannot move his body, head, arms or legs, although has some very restricted "flickering" movement in his thumbs and some of his fmgers and possibly foot. • He is therefore reliant on others to be moved periodically, at least 8 times a day to prevent skin soreness and discomfort. • He is likely to be suffering some positional discomfort despite being repositioned by nursing staff. • MB cannot open his eyes fully and his difficulty in raising his eyelids is likely to progress. • MB's is able to follow and see. However his clarity of vision is uncertain, as he has both vertical and horizontal jerky movements (nystagmus) and his ability to focus is likely to be diminished (his pupils do not constrict) • MB has lost his facial expression, except slight movement of his eyebrows. • MB has lost the ability to communicate his needs and wishes to others. This is permanent. • MB's limited ability to respond is not consistent and repeated and therefore cannot be relied upon as a means for communication as to his distress and pain levels, wishes and needs by the nurses and clinicians. • MB has lost the ability to interact with others or his environment. • He cannot swallow and is fed via a gastrostomy tube. • He cannot cough or clear his own secretions and he undergoes suctioning from his mouth, nose and throat day and night. At a time when MB was able to show physical and facial reactions it was clear this distressed him. Dr S described this as "profound discomfort". He requires ET suctioning at least every 3-4 hours (6-8 times a day). Dr Jardine's enquiries regarding frequency of deep suctioning 4-6 times daily [C7]. Dr Hughes: at least once a day. • MB has to be "bagged" when deep suctioning occurs. This is an unpleasant experience and one which distressed him in the past when he was able to react physically. • The clinicians and experts agree that the use of IV lines, blood sampling, deep suction, bagging and respiratory physiotherapy are likely to be distressing to MB. Thus they are kept to a minimum at present. • The combination of being handled numerous times a day and undergoing the routine intensive and now for MB mundane procedures, whilst being unable to voice his wishes are considered to be "intolerable" for MB (Dr S). • Whilst blood testing has been minimised as much as possible, MB has to undergo blood testing about monthly and whenever there is a deterioration, a likely de saturation and infection at which time he will undergo more frequent blood tests. It is not always possible to give effective pain relief for this. • He has lived all bar 7 weeks of his life in a high dependency unit or intensive care ward in hospital and is likely to have to remain in an intensive care environment. • There is uncertainty as to whether pain relief and sedation levels are sufficient. • It is difficult for MB to be held and cuddled by his parents because of his condition and his necessary connection to life sustaining equipment. • The Future • He will continue to suffer from infections, which if treated with antibiotics will require venous access and blood testing. He is likely to suffer at least 3-4 chest infections a year. • Chest infections will involve increased secretions, more frequent deep suctioning, blood testing, IV access and increased ventilator pressures and "intensive chest physio" therefore pain and distress for MB who will require increased doses of pain killers and sedation. • Intravenous access is particularly difficult with MB and has required a number of attempts in the past. There are only a limited number of sites and gaining IV access is painful. In cases of urgency sedation/pain relief may not be possible. • MB has to be handled numerous times during the day and night for both non painful as well as painful and distressing procedures listed above. • If MB underwent a tracheostomy, he would have to undergo a general anaesthetic and the ordeal and stress of minor surgery in his weakened state. • If MB receives LTIV • He will continue to need suctioning, including deep suctioning, bagging, physiotherapy, splints, repositioning - all of which are known to cause pain! discomfort. • There will be continuing neuromuscular deterioration, he will loose the ability to open his eyelids within several months & his eyesight will deteriorate further. • He will lose the ability to lower his eyebrow - losing all ability to communicate any measure of pain, distress or upset. • His contractures will worsen and scoliosis will develop, both these will cause discomfort and pain. • There will be dysfunction of his autonomic system. • He will need increasing amounts of oxygen and ventilation pressure, which of itself can be uncomfortable. • MB would need high levels of sedation all the time because some of the procedures he will need are unpredictable and he cannot communicate his needs or distress adequately. • The increasing need for sedation will reduce his awareness of pain as well as those experiences which give him comfort at present. • CPR would cause pain and distress as well as possible injury. Caroline Harry Thomas 8 March 2006

61. That list, like each of the other advocates' lists, views from the perspective of continuing the present ventilation and treatment. So the "benefits" are those associated with remaining alive and the "burdens", or in Mr Huw Lloyd's list the "disbenefits", are also those associated with remaining alive and having to endure the treatment. The actual application I am considering, viz the Trust's originating summons, asks for a declaration as to the best interests and lawfulness of "withdrawing" the ventilation and associated treatment, in which case the benefits/advantages and burdens/disadvantages are essentially reversed: the benefit or advantage would be the cessation of pain etc., the burden or disadvantage would, in this case, be the inevitable immediate death and loss of whatever benefit M currently gains from life. In my view, however, nothing should turn, or in this case does turn, on which way round the question is formulated.
62. Whilst it is a very helpful but relatively easy task to draw a list of benefits and burdens, there are still huge difficulties in striking the balance. In the present case they seem to me to be principally (i) forming a reliable appraisal of what the benefits are – the burdens are more clear; (ii) deciding what weight to attach now to predicted future significant additional burdens (such as later scoliosis and autonomic problems) of this progressive disease; and (iii) overall appraisal of the weight to be attached to so many varied considerations which cannot be weighed "mathematically", and so arrive at the final balance and decision.

The benefits

63. At this stage I do not attempt to weigh the benefits but merely to describe them, in human but I hope not sentimental terms. M has a life. He is a living human being. He is and always has been conscious. He has attained the age of 18 months and, despite his condition, the physical size and development of a child of that age. It is possible that he has some degree of brain damage or impaired cognition, but that is uncertain and is not a normal feature of SMA. Although Dr Hughes said, correctly, that there is no objective evidence to support that his cognition is normal but none to support that it is not normal, she agreed that one must make the assumption that it is normal. In my view it would be totally unacceptable (and false legal reasoning) to proceed on any other basis. I accordingly must proceed and do proceed on the assumption that M has normal, age appropriate cognition and power of thought; and normal, age appropriate capacity for moods and emotions, and the capacity to feel pleasure from the stimuli he may receive. Clearly the range of stimuli and experiences he has received in his life is much more limited than those of a normal, healthy 18 month old and so the range of his thought may be limited because, to put it rather crudely, there are fewer things he can think about. But still there are many, surrounded as he is by sights, sounds, experiences, people and activity. Dr Hughes said that if he lives he may be able to learn language and process the thoughts and ideas that language communicates (assuming normal cognition). Since he has been exposed to language all his life, it seems to me that I cannot exclude, but must indeed assume, that he has already learnt some language which he may use in his mind to help process thought.
64. He can hear. He unquestionably has been able to see. Although he is developing ptosis and his eyes are now half closed and his eye movements irregular, the balance of the evidence satisfies me that he does still see, does follow movement and does, at any rate to some degree, still focus. I am also satisfied that he can and does still feel touch, and that just as there are some touches which are painful and he does not like, there are others, particularly the stroke and handling of his parents and siblings, which he does like and which I must assume give him a sense of pleasure.
65. As he can hear and see, I accept the evidence of his parents that he is attentive to TV, DVDs, CDs, stories and speech; and as all these things may give pleasure to other children of 18 months, I must and do assume they give pleasure to him.
66. There is no doubt that he has been in a bonded parent/sibling/child relationship with his parents and brother and sister in the past. He used, when he could, to smile at them and react positively and with pleasure to their presence. Although he no longer has the capacity to smile, I can see no reason which would justify an assumption that he derives any less pleasure now from their presence and the relationship. If he did still possess the physical capacity to smile and communicate, the absence of smiles might tell one much about the relationship or his sense of pleasure. But as what he lacks is that capacity to smile and communicate, the absence tells one nothing.
67. He is blessed with parents, especially his mother, but his father, too, who have the time and ability, and also the willingness and commitment to spend long periods of time with him – most of his waking day. So the pleasure which I assume he gains from the relationship is not short lived or occasional, but is available to him as a constant part of his life for long periods of every day.
68. The parents themselves believe they can still detect reactions of pleasure in that his eyebrows or corners of his mouth may move slightly upwards. The doctors are sceptical. As I found the parents sincere and honest witnesses I do not reject their evidence, and it may be, because of their special relationship with him, that they are still able to detect and do detect genuine reactions which are not visible to others; or they may now be deluding themselves. But whether they do or do not detect genuine reactions, it does not affect my view that neither I, nor anyone, are justified in assuming that he derives less pleasure now simply because he has lost the capacity to react.
69. It is obvious that there is a vast range of early childhood experiences, pleasures, moods and emotions that are simply not available to him: the pleasure of crawling and exploring, the intense pleasure of the first wobbly steps, the pleasure of rough and tumble and of mixing with other children, and the pleasure of messily eating. There is no need to multiply examples and the list is endless. But the absence of these pleasures still leaves him with a core of pleasure, including what is probably the single most important source of pleasure and emotion to a small child, his relationship with his parents and family.

The burdens

70. The burdens currently to M, and the ones which haunt the doctors, are the extent to which he is exposed to discomfort, distress or pain, coupled with his inability to communicate the extent to him of that discomfort, distress or pain and inability ever to seek help to reduce discomfort, distress or pain: as Dr Hughes said, there is the recurring discomfort of simply wanting to be moved or wriggled in bed but not being able to ask for help (described in the lists of Miss Harry Thomas and Mr Lloyd as "positional discomfort").
71. Currently there are some procedures which may have to be undertaken periodically which definitely cause pain: these include blood tests and the insertion of cannulae or intravenous lines when certain antibiotics have to be administered.
72. There is a procedure which has to be performed frequently which causes marked discomfort, bordering on, or even amounting to, pain, namely deep suctioning. Changing of the endo-tracheal tube itself is also, in the words of Dr S N, "highly uncomfortable."
73. There are procedures which cause discomfort and distress, though probably not with the intensity of pain, which include bagging, suctioning (non-deep) of the endo-tracheal tube, nose suctioning, and physiotherapy both to maintain his general well-being and to clear secretions from his lungs.
74. There is or may be constant discomfort from the presence of the endo-tracheal tube itself and from positional discomfort.
75. There is discomfort when he feels secretions accumulate in his chest which he cannot cough to clear but for which he cannot ask for suction.
76. There could be irritation or discomfort from localised infection around the site of the gastrostomy tube, although that has rarely been a problem to date.
77. The medical evidence clearly shows that the disease in M is progressive and he will deteriorate further. Miss Harry Thomas' list identifies deterioration and additional or increasing sources of discomfort and pain from that deterioration under the heading "The Future". Mr Lloyd's list identifies, and the evidence supports, that in the future there will or may be: opthalmoplegia (loss of eye movement); complete ptosis (inability to open the eye); skin problems if he develops pressure sores as a result of increasing weight; potential increased positional discomfort, also from increased weight; a need to increase the pressure of the ventilation; potential autonomic problems, including bladder (incontinence) or bowel (constipation or diarrhoea) dysfunction and sweating; increasing contractures of the joints; the onset of scoliosis (curvature of the spine) which adds to discomfort and handling difficulties; potential gastro-oesophageal reflux; osteopenia (lack of bone mineralization) with an associated risk of bone fractures; and a risk of forming bladder or kidney stones.
78. Although most of these future problems must occur, some of them may not. Some are manageable by medication. He may in any event die before all or any of them become significant. The question therefore arises: how far should they be taken into account when deciding the balance of his best interests and whether ventilation should be discontinued now?
79. On behalf of the parents, Mr Charles Foster submits that predicted future deterioration is irrelevant and should be disregarded altogether in assessing current best interests. It may or may not justify withdrawing ventilation at some future date if or when the further deterioration has shifted the balance of best interests; but if, in his current state, the balance favours continuing ventilation and continuing life, the prospect of future deterioration cannot possibly justify withdrawing ventilation now.
80. On behalf of the Trust, Mr Huw Lloyd submits that the deterioration is progressive, inexorable and continuing all the time – he stresses the degree of deterioration in the period between the examinations by Dr Hughes in September and Dr Jardine in January – and says that where the graph of future deterioration is so steep and is inevitable, that is a matter to go in the balance. Where (in other circumstances) some deterioration is predicted to be a long time ahead, then the position is different.
81. As between these two submissions, I consider that Mr Lloyd is right. When deterioration is inevitable, continuous and relatively rapid it is unrealistic to leave it out of the overall balance or account.

The guardian's view

82. The respective positions of the Trust and of the parents are plain. The Trust and doctors firmly say that it is clearly in M's overall best interests to withdraw ventilation and be allowed to die now. Dr S I and Dr S N both feel that that has been the position for many months. The parents, on the other hand, firmly and sincerely believe and argue that despite the pain and suffering M still has value from his life and a quality of life which outweighs the burdens and which should be preserved and, if possible, prolonged.
83. M's own guardian supports the Trust. It is her duty to take an objective view and make her own appraisal of overall best interests, and to argue accordingly. The guardian investigated as thoroughly as she could. She of course saw M whom she represents. In view of the existing volume of uncontradicted medical evidence, she decided, appropriately, not to instruct a yet further expert of her own. Her report dated 28^th February 2006 is recent, full, well argued and clear.
84. Under a heading "Assessment" she said:

"46. This is a heart wrenching case. M, who was once a smiling, inquisitive baby, is now in the final phases of a terminal illness and is now no longer able to express himself or make meaningful physical movements. M is part of a family, who….. have bonded and developed a relationship with him ….

51…. Given that M is suffering from a terminal illness from which he may have died some time ago if it were not for medical intervention, further treatment could in fact be considered cruel and intrusive.

52 …..It would seem that the doctors' decision does not rest on M's level of cognitive functioning, but on how he should die peacefully in a pain free way because of his poor prognosis and the inevitability of death due to his terminal illness.

55….M does have positive experiences ….. but in balancing what I think in his best interests, it does not in my opinion outweigh the burdens and distressing elements of his medical treatment …."

85. The guardian went on, rightly, to identify areas of the case on which she would wish to hear the oral evidence but, subject to that and on the information before her at the date of her report, favoured option 4.
86. In the course of the guardian's written "Closing statement and submissions", drafted by Miss Harry Thomas but clearly specifically endorsed by the guardian, the evidence is again carefully summarised, the benefits and burdens weighed, and the same view expressed that on balance it is not in M's best interests for his life to continue to be artificially prolonged.
87. In the course of her eloquent final oral submissions, Miss Harry Thomas particularly stressed the deterioration over the last six months and the current level of pain and discomfort. She referred to the amount and number of repeated incessant procedures that M has to undergo in intensive care to keep him alive. There is so much going on all the time to make him miserable and sad, that there are few opportunities for him to be happy or in pleasure. And she said that it is the very strongly held view of the guardian that currently (even ignoring future deterioration) the burdens outweigh the benefits.

The balance of best interests – my own view

88. So as not to prolong the agony, I will now announce my decision and then try, fairly briefly, to explain the reasons for it.
89. I am not persuaded, even taking into account predicted future deterioration, that it is currently in the best interests of M to discontinue ventilation with the inevitable result that he will immediately die. I therefore do not currently support option 4 and cannot and will not make a declaration in the terms sought by paragraph 2(a) of the originating summons.
90. I actually go further and consider that currently it is positively in his best interests to continue with continuous pressure ventilation and with the nursing and medical care that properly go with it, including suctioning and deep suctioning when required, replacement of the tube as necessary, and chest and lung physiotherapy to clear his secretions. Although that is my opinion, I cannot and do not make an order or declaration to that effect. I merely state it.
91. There are, however, procedures which go beyond maintaining ventilation, which require the positive infliction of pain and which, if required, will, in my view, mean that M has moved naturally towards his death despite the ventilation. If that point is reached, it would be in his best interests then to withhold those procedures even though he would then probably die.
92. Those procedures are:

i) Cardio pulmonary resuscitation consisting of: cardiac massage; or the administration of inotropes (i.e. atropine or adrenaline); or cardioversion or defibrillation; or bag ventilation beyond 20 minutes in the event that M cannot be put back on or sustained on mechanical ventilation; or the siting of an intravenous line or interosseous needle. I will refer to the above, collectively and individually, as CPR.

ii) ECG monitoring as an indicator for, or adjunct of, any of the treatments referred to as CPR.

iii) The administration of intravenous antibiotics.

iv) Blood sampling.

93. I am willing to make and will make a suitably drafted declaration to the effect that it is in his own best interests and lawful to withhold or not to administer any of those forms of treatment. The effect would be broadly to reflect option 2 (continue with the current management plan but not escalate treatment above the present level); but to exclude the most invasive and no longer justifiable forms of treatment.
94. I now give my reasons why, with great and very genuine respect for all the doctors, and also for the view of the guardian, I can only partially agree with them; and do not agree with them on the central issue of withdrawing ventilation.
95. M is going to die. He will probably die within about a year although I fully accept he may live longer. He may also die much sooner. I do not enter into the question whether he is already "in the dying process" as stated by Dr S I. Precisely because doctors and modern science have the capacity to prolong life or delay death, there may be medical, ethical and philosophical questions about when "the dying process" begins. But I do know that, currently, between one day and the next he is not dying and does not die; although he may suddenly die on any day.
96. If he should suffer a cardiac failure such that any of the forms of CPR described above are required, then he would at that point definitely be dying, even if he might, by forms of CPR, be saved. But the CPR potentially requires renewed pain, renewed aggressive intervention and potentially distress and little dignity in death. That is not justified or in his best interests when it is his destiny, even if revived on that occasion, soon to die.
97. So I am clear that the doctors need not resort again to CPR, or any ECG monitoring merely as an indicator for, or adjunct of, CPR.
98. The administration of intravenous antibiotics and blood sampling also requires the infliction of pain (particularly in his case because of the difficulty of getting a vein). They would be indicated by some new and serious infection, not able to be treated via the gastrostomy tube. That, too, may mean that death is near and it would not be in his best interests or justified once again to embark on the infliction of pain.
99. I stress that a declaration reflecting the above will be permissive in its effect. It will have the effect that, in the view of this court, doctors or staff need not embark on the listed treatments; but neither the declaration nor anything in this judgment should deter or would prevent a doctor or staff from giving any of the listed treatments if he or they thought fit at the time.
100. I take a different view, however, about deliberate withdrawal of ventilation. I fully accept all the burdens of discomfort, distress and some pain to which M is daily subjected, but from which I would now specifically exclude, if the need arises, CPR and the other treatments I have just described. Even excluding these, I accept that there is almost relentless discomfort, periods of distress and relatively short episodes of pain (deep suctioning). It is indeed a helpless and sad life.
101. But that life does in my view include within it the benefits that I have tried to describe and will not repeat. Within those benefits, and central to them, is my view that on the available evidence I must proceed on the basis that M has age appropriate cognition, and does continue to have a relationship of value to him with his family, and does continue to gain other pleasures from touch, sight and sound. A number of these benefits are expressed in the guardian's list as "possible/probable" and it may be that doubts in the guardian's mind as to whether he in fact gains these benefits is part of the difference between us.
102. It is impossible to put a mathematical or any other value on the benefits. But they are precious and real and they are the benefits, and only benefits, that M was destined to gain from his life. I do not consider that from one day to the next all the routine discomfort, distress and pain that the doctors describe (but not the ones I have now excluded) outweigh those benefits so that I can say that it is in his best interests that those benefits, and life itself, should immediately end. On the contrary, I positively consider that as his life does still have benefits, and is his life, it should be enabled to continue, subject to excluding the treatment I have identified.
103. I do take into account, and have very anxiously considered, future deterioration. The prospect of it is not, of course, something of which M himself can be aware and cannot of itself cause him anguish or foreboding in the way that it may to an adult, or a much older child. The time may come when he has further deteriorated to such an extent and in certain ways that the balance changes. But I do not consider that the future, however awful it may become, yet justifies that today, tomorrow, or the next day his current burdens outweigh the benefits and that he should be allowed to die.
104. There is one further matter to which I must specifically refer. The doctors all consider that there is a positive benefit to M in being able to plan, arrange, and by sedation enable what Dr S I called "a good death". In contrast, one of the "disbenefits" in Mr Lloyd's list of continuing with ventilation is that there may be a "potentially distressing undisciplined death in an uncontrolled situation." There is much force in the point. Probably everyone would hope for "a good death" for themselves and their loved ones. Some people, especially an elderly person who may feel he has already had a full life, might strongly desire to achieve a good death even at the expense of a shorter life. But not all. The instinct to survive is so strong that others may endure great and prolonged suffering in the struggle to survive.
105. The circumstances and benefit of a "good death" as described by Dr S I depend very considerably on the role and involvement of the parents, and I do not think that on the facts of this case the perceived advantage of a good death can yet tip the scales so that the benefits of survival and life itself are outweighed.

Concluding comments

106. I wish to stress that this is a very fact specific decision taken in the actual circumstances as they are for this child and today. These circumstances include, critically, the facts that he already has been and is on ventilation and has already survived to the age of 18 months; is assumed not to be brain damaged; is in a close relationship with a family who have spent and are able to spend very considerable time with him; and does already have an accumulation of experiences and the cognition to gain pleasure from them.
107. Others may analyse this judgment for its "implications". It is not a "policy based" judgment at all and is not designed to have "implications" (although I fully appreciate that it may do so). My sole and intense focus has been on this child alone, in his circumstances as they are today (but taking into account deterioration).
108. I hope that this case can now return to the privacy of the hospital where the doctors and the parents must continue to consult and to keep under review. The time is not now; but may come when the parents have to face up to the inevitability and need, for M's own sake, of withdrawal of ventilation. If they do, they will know that they have done everything possible, for as long as possible, to enable M to achieve and value for as long as possible all that his life could give to him.
109. Every day some parents somewhere, in consultation with doctors, have to make agonising decisions about the best interests of children with severe SMA or similar disorders. I hope that this judgment and decision will neither deter doctors from commencing ventilation when they consider it should be tried; nor lead any parent who has taken or may take, on the advice of doctors, the agonising decision not to start, or to discontinue, ventilation, to feel that their decision was mistaken. For every case and every child is unique, and this case concerns M alone.