Central Manchester University Hospitals NHS Foundation Trust v A & Ors

This case concerns the withdrawal of life support from two very young children. No one, which includes myself, who has not been in the position of the parents in this case can possibly truly appreciate and understand the agony with which they are faced. I have the utmost respect and sympathy for them in their plight. The mother has not personally attended this hearing. Her husband, the father, has done and has represented both parents in person. Although his command of English is limited and he has communicated mainly through an interpreter, he is, if I may very respectfully say so, a man of obvious intelligence and insight. He has participated in this hearing with intelligence, a complete grasp of the issues, moderation in his approach, and, I would add, considerable personal charm. Further, the evidence from the doctors, and also my own observation of a short video which the father showed me on his mobile phone earlier today, is that the father, and I am sure also the mother, care for these two boys with very great tenderness.

The issue in this case is whether it would be lawful to withdraw mechanical or artificial ventilation from two identical male twins, now aged about fourteen months. Being identical or monozygotic, their genetic make-up is identical. They both suffer a progressive neuro-degenerative disorder. It has no known diagnosis and is untreatable and completely incurable. If the mechanical ventilation is withdrawn from either of them, he will inevitably die, probably within an hour or two, being unable to breathe naturally. This situation has persisted now for several months. The treating medical team consider that it is unethical to maintain the ventilation and that they are now needlessly prolonging pain and suffering for each boy. The parents, very, very understandably, feel unable to consent to the ventilation being withdrawn.

The applicant NHS Foundation Trust now apply to the court for a declaration that it would be lawful and in the best interests of each child to withdraw or discontinue the ventilation, despite the lack of parental consent. The treating team have made very clear that if I do grant that declaration, they would wish to engage fully with the parents, whom of course they know very well, as to the manner in which the process would be handled. For instance, whether the ventilation should be withdrawn at the hospital or at a hospice or, if the parents so wish, at their home; and whether it should be withdrawn from both boys at the same time or sequentially and, if so, in which order. As the treating paediatrician said, the hospital is, very sadly, used to handling such situations. I have no reason at all to doubt (nor is it disputed by the father) that the sad process would be handled as humanely, sensitively and sympathetically, and with as much dignity, as possible.

I hope it goes without saying, but needs to be stressed and made express, that each boy is an entirely independent human being in his own right, and each requires separate consideration. If there was the slightest relevant difference in their development, functioning or prognosis, that could be absolutely critical, and the doctors have stressed that at all times they treat and consider each child separately and individually. That said, the truth is that these identical twins suffer the same identical disorder. It is equally severe in both of them; and frankly there is no material difference between them, although the precise progress of the disorder may vary between the one or the other from one day to the next.

As relatively long ago now as March 2006, in the case of An NHS Trust v. MB [2006] EWHC 507 (Fam), I endeavoured to summarise the legal framework in a situation such as this in ten propositions which I set out as (i) to (x) within paragraph 16 of my judgment. So far as I am aware, the law has not changed. Those propositions have been frequently repeated, and have never, so far as I am aware, been criticised or stated to be wrong. I therefore now repeat them:

The family is an Iraqi family who were living in Iraq. The parents have an elder son, now aged 4, who is healthy and normal. They next had a baby daughter who, very tragically, died at the age of eight months. Her condition was not fully diagnosed; but, like that of these boys, it manifested in seizures and respiratory failure, and it now seems very likely that she and they were afflicted by the same, unknown, genetic disorder. These boys, A and H, were born in Iraq by emergency caesarean in early August 2014. They initially appeared to be entirely normal babies and to develop entirely normally. In December 2014 the parents travelled with their three children to England, where the mother is undertaking a course of study. Around the age of three to four months both babies began to display abnormal features. They ceased to feed well. They displayed abnormal jerking movements. Both boys were first admitted to a hospital in England in mid-January 2015 when aged five months, and they have remained in hospitals ever since. In early April 2015 A went into cardio-respiratory arrest and required CPR for six minutes. He was intubated and placed on mechanical ventilation, and transferred to the paediatric intensive care unit at the Royal Manchester Children’s Hospital, where he has remained ever since. A few days later H was also transferred to the same hospital, so that both boys could be together. In mid-May 2015 H also suffered a respiratory arrest and has required mechanical ventilation ever since. Both boys have deteriorated ever since, although there are fluctuations from day to day in the condition of H.

The treating doctors at the Royal Manchester Children’s Hospital sought a completely independent second opinion from a consultant paediatric neurologist based in Leeds, Dr Helen McCullagh MRCPCH. The opinion of Dr McCullagh as to the deteriorating condition of the boys, and as to the futility of continuing artificial ventilation, in fact accords entirely with that of the treating doctors. As a result, I have written evidence and have also heard oral evidence from the following three doctors: Dr Stephen Playfor DM, a consultant paediatric intensivist, who is in overall charge of the treating team at the Royal Manchester Children’s Hospital; Dr Mary Hughes FRCPCH, a consultant paediatric neurologist based at, and part of the treating team at, the Royal Manchester Children’s Hospital; and Dr McCullagh, to whom I have already referred. In her report dated 5 ^th June 2015, made for the purpose of these proceedings, Dr Hughes concludes:

The earlier second opinion of Dr McCullagh was not obtained for the purpose of, or made in the context of, these proceedings, but was, as I have described, a second opinion from an outside consultant to the treating team at the Royal Manchester Children’s Hospital. Her letter, dated 15 ^th May 2015, says in part as follows:

Dr Playfor gave extensive oral evidence, partly last Tuesday, and again when this case (which could not be heard during Wednesday or Thursday) resumed today. He said that there has been, and can be, no diagnosis of a disorder except that there is a progressive neurodegenerative process in both boys. He said that each has displayed a slow and steady loss of neurological function. Each displays underlying problems of stiffness, dystonia (i.e. abnormal tone and being abnormally stiff) and spasms. These have become progressively worse in both boys. He said that none of the treating or nursing staff have noticed any response in either boy to voice or other stimuli. He stressed that both boys are now suffering burdens, pain and discomfort, both from their underlying disease or disorder and also from the treatments being given to them. He described those burdens, but, for the purposes of this judgment, they are all summarised in a document prepared by Ms Lorraine Cavanagh, counsel on behalf of the applicant Trust, which, with her permission, I will incorporate at a slightly later stage into this judgment. Dr Playfor said on Tuesday, which he repeated again today, that the effect of the neurodegeneration is that each child is increasingly less able to express discomfort. He said that there is a continuing decline in the neuro-functioning of each of them. They do not look at one, do not fix their eyes, and do not follow people’s eyes. He said they display no evidence of any pleasure or enjoyment of life. He stressed that, if the artificial ventilation is maintained, the underlying condition will continue to deteriorate. The burden of artificial ventilation will increase. In time, their chests will collapse because of their inability to clear secretions. He stressed again that, as the illness progresses, each will become less able to display or express discomfort and pain. He said that the boys could survive physically for years with artificial ventilation and all other supportive measures. As they are being fed with nasol-gastric tubes, they will physically grow and lengthen, but their brains will not grow and develop as they should. They will remain small and will become proportionately smaller.

Several months ago MRI scans were undertaken on both boys. The father has repeatedly asked during this hearing whether those scans could be repeated to see if there is evidence of any brain growth. However, Dr Playfor described very clearly that there was no clinical indication or justification for repeating the MRI scans. He said that that would not assist in the treatment of either boy. Such scans may show that the brains look similar or even have enlarged in size, or may show deterioration, but that information would not impact on the treatment of either child, for there is no correlation between the MRI appearance of the brain and how it is functioning. This point with regard to the futility of repeat MRI scans was repeated also in their oral evidence by Dr Hughes and Dr McCullagh. Dr Hughes said that both boys suffer from brain atrophy and there is no treatment for brain atrophy. She said that she would very much concur that there is no clinical indication to repeat an MRI scan. It would not give any information to help diagnosis or treatment. It gives information about the structure of the brain, but not about the function of the brain. What gives information about the function of the brain is the clinical assessment of each child. Dr McCullagh said in her oral evidence that she did not believe that repeat MRI scans would add any more information. She said that such scans would require a general anaesthetic upon the child concerned in order to keep him entirely still for twenty minutes, and that there are risks inherent in the general anaesthetic, and inherent also in the child being placed anaesthetised in the scanner. She said that she would not routinely re-request investigations that she did not think were appropriate. The existing MRI scans have already been reported upon by experts in two separate hospitals. Dr McCullagh stressed that the existing MRI scans show a loss of tissue in the brains of each boy, which tells the doctors that there has been atrophy.

Today Dr Playfor, who has attended again, gave further oral evidence in the light of various points made by the father during the course of his own oral evidence this morning. The father showed me and Dr Playfor and others in the court room a short video clip on his mobile phone of one of the children whilst the father was talking to him in a most tender and soothing way. It is right to say that on that clip there are visible movements of the boy’s head, but Dr Playfor said that those are typical movements that that boy does produce with roving head movements. Dr Playfor has never seen any purposeful movements by either child. He repeated that both boys display abnormalities of tone and movements in their limbs and head. They display dystonia and jerking spasms. The father said that he had observed tears in the eyes of one or both boys, and suggested that this shows that they are crying and thereby displaying emotion. Dr Playfor doubts that. He said that crying is a high order function, which requires a complex process of receiving neurological information and processing it in the brain and then the physiological response of crying. The production of tears or lachrymation can be short circuited by muscles around the tear ducts, and it is much more likely that it is that process, rather than crying as an emotional response, that is being observed in these boys. He said that their muscles are not being controlled centrally by the brain. He said that they can react to pain and discomfort, but because of the degeneration of their brains they cannot process an emotional response to, for example, their parents’ touch or voice. He pointed out that a normal child would be relaxed by a soothing experience such as a gentle touch or the feel of a parent, but in these children that generates muscle spasm.

At the very end of the case Ms Cavanagh summarised the position of the medical evidence in the following short sentences to which Dr Playfor had expressly indicated his agreement and approval. Ms Cavanagh said:

The children’s guardian has visited the children in hospital, albeit relatively briefly. She made a decision, with which I agree, not to seek to obtain further independent expert evidence in view of the existence already in this case of the independent second opinion of Dr McCullagh. The considered position of the guardian, which she reaffirmed by her brief oral evidence this afternoon at the close of all the other oral evidence, is to support the making of the declarations that the hospital seek. Ms Melanie Carew, who appears on behalf of the guardian, prepared a similar, though shorter, table of benefits and burdens to which I attach weight - coming as it does from the guardian - but I do not further lengthen this judgment by reproducing. Essentially, there is overlap in the considered opinion and approach both of the doctors and of the guardian.

As I have said, the father has chosen to act in person throughout, although I understand that a very well-known firm of solicitors had offered and was available to act on his behalf. So, during the two days of this hearing (last Tuesday and again today), I have engaged very considerably with the father, both in his role as a self-representing party and also in his role as a witness when he gave his very measured evidence upon the Koran today. Both parents are of the Islamic faith and the father appropriately stresses to me the contents of a document, the original of which is in Arabic script but of which a translation has been supplied to me. That translation reads, so far as material, as follows:

During the course of his oral evidence, the father testified and made a number of points. He said that when he or the mother tickle the boys they start moving to avoid it. He said that they start smiling. It was in later answer to that evidence that Dr Playfor was to say, as I have already quoted, that these movements that the father observes in the children are not in truth indicative of pleasure. They are in fact random roving movements by the child concerned. The father then made the very important point that he believes that the Merciful God may one day enable medical science to advance so as to find a cure, and so he pleaded that the boys should be kept alive so as to be able to benefit from that cure. I regret to say that the evidence of all the doctors leaves me satisfied beyond any doubt that there is in truth no prospect of a cure for either of these boys ever. The father then made the point that a number of the disadvantages highlighted by Dr Playfor and included within Ms Cavanagh’s list are, as he put it, “for the future”. That is in fact correct. For instance, there is a prediction that, if the children remain alive, scoliosis may, or will, develop as they grow physically. There is a prediction that they are at risk of developing osteopenia and kidney stones. These are predicted complications, not current complications. But the tenor of the evidence of all the doctors is that already these children are currently suffering so many complications, and suffering pain and discomfort from current treatment, as to make prolongation of the treatment not only futile but unjustifiable. The father made the point that some of the pain and discomfort, for instance from the insertion of needles and cannulae, may be reduced, if not eliminated, by applying forms of local anaesthesia.

The father stressed again how offensive it is to the Muslim beliefs of himself and his wife that life support should be withdrawn before the brain of the respective child “has stopped working finally” in accordance with the resolution of the Islamic Fiqh Council. He said, most eloquently, “I have respect for the law of the United Kingdom, but, please, do not forget that withdrawal of life support goes against our beliefs.” In this regard I refer to what I said at paragraph 49 of my judgment in MB , and repeated at paragraph 41 of my judgment in The NHS Trust v A [2007] EWHC 1696 (Fam):

The father also raised concerns about whether the nursing staff have always been as attentive as they should be, and urged me not to place much reliance upon the nursing report, which was attached to the report of the guardian but to which, for that reason, I make no reference. I wish to stress, however, that none of the nurses have had any opportunity to comment upon some of the oral evidence of the father today; and I stress very clearly indeed that I neither express, nor imply, the slightest criticism myself of the dedication or expertise of the nurses. The father also made the point that withdrawal of life support and the consequent deaths of the children would not affect just him and his wife and their elder surviving son, but also the whole family, most of whom remain in Iraq. I completely understand and deeply sympathise with that point. However, as is clear from the propositions of law quoted above, my decision must be governed solely by the best interests of each of these children themselves. I cannot ultimately be influenced by the obvious impact upon, or sympathy for, the families.

I have already announced before commencing this ex tempore judgment what my decision is, namely to make declarations in the terms sought. I did so, because I felt it would be unkind to the father, who attends alone and unsupported, save by the independent interpreter, to have to sit through a long judgment in a state of great anxiety and uncertainty as to outcome. In my judgment in the case of MB , I stressed very strongly in the “Concluding comments” at paragraphs 106 to 109 how very fact specific a decision of this kind always is. Every child is unique, and the court needs to focus totally upon the child or children with whom it is currently concerned. It is neither helpful nor appropriate in cases of this kind for courts to engage upon the legal technique of “distinguishing” so frequently adopted by lawyers and judges in most other legal contexts. That said, I appreciate that there are obvious points of similarity between the situation with which I was concerned in the case of MB, and the situation with which I am concerned in this case. A reader of this judgment, who is familiar also with that judgment and decision, may reasonably wonder why the same judge declined to authorise the withdrawal of artificial ventilation in that case when, as I have indicated, I propose to do so in this case. There is, however, a very significant difference in the condition and circumstances of the child or children in these respective cases. That difference turns upon cognition.

In paragraph 63 of my judgment in that case I said of the child in that case that:

Tragically, I deeply regret that the situation in the present case is in fact diametrically the reverse of the situation in that case. In that case, the assumption had to be that the brain of the child concerned was undamaged and was functioning normally, since brain damage is not a normal feature of the condition he suffered of spinal muscular atrophy (“SMA”). The disease or disorder that that child suffered was a complete inability actually to move any of his voluntary muscles. Therefore he was unable to breathe naturally, and unable in any way whatsoever to communicate emotion. But there was no evidence of any damage to any of his senses, and no evidence that he did not process stimuli in a normal way within his brain, so as to experience within his brain all the normal pleasures and emotions of an eighteen month old baby.

The circumstances of these two boys is the reverse. Their disorder does not relate to their muscles. It relates fundamentally to their brains. Their muscles, to a degree, do function. The problem for these boys is the atrophy and degeneration of their brains so that, as Dr Playfor said this afternoon in a passage I have already quoted, “because of the degeneration of their brains they cannot process an emotional response…” So also, in that short proposition by Ms Cavanagh that I have already quoted, “The children are, in the opinion of the clinicians, cognitively unable to experience pleasure from comforting stimuli.” So, although there may be much superficial similarity between the circumstances of these two boys and that of MB in that case, on proper analysis their situations are completely different.

In this case, the medical evidence satisfies me that these children already have severely damaged, or atrophied and malfunctioning brains. I could not go so far as to say, in the language of the Islamic Fiqh Council’s second resolution, that their brains “have stopped working finally”, but they are not functioning cognitively at all. These boys are merely artificially surviving. Their situation is unquestionably irreversible, and can only deteriorate progressively further. I give the fullest possible weight to the strong presumption for the prolongation of life to which I referred in paragraph (vii) of the ten propositions. But it seems to me that artificially to prolong their lives in this particular case lacks any purpose, confers no benefit at all apart from the fact of physical survival, and involves perpetuating the infliction of pain and discomfort for no gain or purpose. It is not in the best interests of either boy that the process be artificially prolonged, and it is in their best interests that nature should now be permitted to take its inevitable course. That is the tragic genetic destiny of each of these boys.

I will accordingly grant declarations in relation to each child separately and specifically, but in the same identical terms, namely:

It is lawful and in the best interests of [the respective child] for the clinicians of the Royal Manchester Children’s Hospital to withdraw mechanical ventilation from him after due and careful consideration with his parents as to implementation of the process.

In the event of a serious deterioration in [the respective child’s] medical condition, it is lawful and in his best interests for the following medical treatment to be withheld:

Bag and mask ventilation, save to the extent that it is considered to be clinically appropriate in any given situation;

Endotracheal intubation;

Invasive or non-invasive ventilation.

In the event of a serious deterioration in [the respective child’s] medical condition which leads to a cardiac arrest, it is lawful and in his best interests not to administer cardiac massage and resuscitation drugs including Inotropes.

In the event of a serious infection, including pneumonia, it is lawful and in [the respective child’s] best interests not to undergo blood sampling or to receive intravenous antibiotics unless it is considered that such treatment would help to make him more comfortable and/or distress and pain free.

It is lawful and in his best interests for [the respective child’s] treating clinicians to provide him with palliative care only.