(Family Division, Russell J, 30 September 2014)
Medical treatment – Best interests – 17-month-old child sustained a severe brain injury – Whether the withdrawal of mechanical ventilation was in his best interests
The full judgment is available below.
The NHS Foundation Trust was granted permission to withdraw life-sustaining treatment from a 17-month-old baby who had sustained a severe brain injury.
The 17-month-old baby was born by caesarean section at 26 weeks’ gestation. He required immediate resuscitation and was intubated. Although his condition temporarily improved he later suffered acute cardio-respiratory deterioration requiring mechanical ventilation.
An MRI scan showed he had suffered an irreversible infarction of almost the entirety of the cerebral hemispheres and part of the brain stem. He had suffered a catastrophic irreversible hypoxic-ischemic injury to his brain. He had since remained in hospital dependent on mechanical ventilation.
The NHS Trust applied for permission to withdraw mechanical ventilation which would inevitably result in the child’s death. The parents opposed the application primarily on religious grounds and the belief that they did not have the right to agree to the withdrawal of life sustaining treatment.
The medical opinion was that there was no prospect of recovery. If he were extubated he would most likely die within an hour.
It was in the child’s best interests for the application to be allowed. There was a strong presumption in favour of action which prolonged life but in the circumstances that presumption was rebutted. He had suffered a profound and extensive injury to his brain and brain stem. Prolonged ventilation would lead to infection, lung injury and trauma to the soft tissues through continued invasive procedures. On balance it was in his best interests to withdraw life-sustaining treatment.
The fully referenced, judicially approved judgment and headnote will appear in a forthcoming issue of
Family Law Reports. A detailed summary and analysis of the case will appear in Family Law.
Case No: FD14P00858
Neutral Citation Number:  EWHC 3315 (Fam)
IN THE HIGH COURT OF JUSTICE
Tuesday, 30 September 2014
MS JUSTICE RUSSELL SITTING IN OPEN COURT ON 29TH & 30TH SEPTEMBER 2014
IN THE ROYAL COURTS OF JUSTICE
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King’s College Hospital NHS Foundation Trust
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T, V and ZT(A child by his Children’s Guardian)
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(Official Shorthand Writers to the Court)
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MISS CLAIRE WATSON appeared on behalf of the NHS Trust
MR VIKRAM SACHDEVA appeared on behalf of the Mother
THE FATHER appeared in Person
MR FORD appeared on behalf of the Guardian
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 This judgment is given orally to avoid delay for the baby and for his parents in hearing the decision of this court. The court is fully aware of the public interest in these decisions, a transcript will be prepared at public expense and a full judgment will be placed on Bailii. At all times the family and lay parties’ names will be subject to reporting restrictions.
 This is a tragic case concerning ZT, a baby of 17 months, who was born by emergency caesarean section at 26 weeks on 28 April 2013. He is the much loved son of Ms T and Mr V, who are separated, but present a united front as his devoted and loving parents. At the outset of this hearing I made an order conferring parental responsibility on Mr V.
 The baby, after he was born, required resuscitation immediately and was intubated within 20 minutes of his birth. His condition later improved, but he had to remain in hospital. At the beginning of December 2013 he was reported to be smiling, interactive and responsive with normal ultrasound scans of his head. However, on 5 December 2013 he suddenly suffered acute cardio-respiratory deterioration and required mechanical ventilation. Subsequent independent medical opinion prepared for this case reported that there were multiple failures in the actions of the multi-disciplinary team caring for him, including prolonged unsuccessful attempts at tracheal intubation, which resulted in a period of cardiac arrest lasting for about 20 minutes. Later that day there was noted clinical evidence of seizure activity and a second period of cardiac arrest lasting 20 minutes occurred around midnight.
 An EEG was performed later on 6 December indicating a poor prognosis for recovery from coma. Z went on to develop severe multi-organ failure requiring high frequency oscillatory ventilation. An MRI scan on 12 December 2013 revealed irreversible infarction involving almost the entirety of the cerebral hemispheres and part of the brain stem. The baby had suffered a catastrophic irreversible hypoxic-ischemic injury to the brain. Dr Playfor, the independent expert who is a consultant paediatric intensivist, has said that there has been the most “enormous destruction of most of Z’s brain tissue, including areas of his brain stem, which means that he is able to display only the slightest degree of response to outside stimulation.”
 The baby remained in hospital and now breathes only with the assistance of mechanical ventilation. The NHS Trust caring for him have brought the matter to court to ask for permission to withdraw ventilation, which will inevitably result in the baby’s death. The baby is represented by CAFCASS Legal. He has a very experienced guardian, Janet Sivills. His mother is represented by counsel and his father appears in person.
 This case, which is unbearably sad, is further distinguished by two factors. The great dignity of the parents who have devoted their time and love to their son and, secondly, by the fact that there is no dispute over the medical evidence. The parents do not agree to the withdrawal of ventilation for several reasons, because they love their son and believe that he responds to them, but also because, as committed and devout Christians they believe that they do not have the right to agree to life sustaining treatment being withdrawn. It is their belief that given time God may work a miracle and Z may recover enough to participate more fully in life. I have nothing but sympathy for them and greatly admire the love and devotion they have shown and the dignified way in which they have dealt with the tragedy which has befallen their son and it’s aftermath including these proceedings.
 As I have said, the medical evidence is not in dispute, although the parents believe in the possibility of recovery that is not the opinion of all the medical experts who have been involved in this case. I have already referred to the independent evidence of Dr Playfor and I return to it as it will form the basis of the baby’s past and current medical condition which I shall set out hereafter.
 The MRI scan on 12 December 2013 and the EEG on the same date records severe irreversible brain injury as the dominant finding, but also enlargement of all four ventricles indicating a degree of hydrocephalus; in addition to which the EEG recorded no clear cerebral rhythms of reactivity to external stimuli. A second opinion from Dr A, a consultant and neonatologist, on 13 December 2013, concluded that the baby had suffered catastrophic extensive brain damage, which rendered him unable to move or to breathe for himself without hope of survival without invasive ventilation. He felt then that it was not Z’s interests to prolong his life, as he had no hope of recovery and would continue on ventilation and in intensive care, which is indeed what happened to him.
 The baby was reviewed on 6 January 2014 by a consultant paediatrician in neuro-rehabilitation who found no response, or negligible, response to light in the pupil of the eyes, no limb or facial movement, imperceptible head movement, no deep tendon reflexes, no withdrawal or change on pressure being applied to the baby. He concluded that the baby was profoundly brain damaged with no sign or immediate prospect of sustaining life off the ventilator. Were he to survive he would be profoundly impaired, unable to walk, talk or feed himself and suffering four-limb cerebral palsy.
 On 8 January 2014 an EEG was performed during which there were no clear changes on different types of stimulation being performed on the baby and a CT scan on 30 January 2014 recorded that the features observed were in keeping with severe global hypoxic-ischemic brain insult. The neuro-imaging was reviewed again by a consultant paediatrician in neuro-rehabilitation, to whom I have already referred, in February 2014 he found that it “confirmed profound widespread and irreversible brain damage meaning it was profoundly unlikely that Z could survive off life support”; and if he were able to survive off ventilation he would undoubtedly have profound impairment of all neurological function with no prospect of meaningful movement, vision, communication, engagement with others or feeding.
 When the baby was reviewed again in May 2014 his level of responsiveness was so poor that it was decided to conduct a formal clinical examination to establish whether he had met the clinical criteria for brain stem death. The examination was carried out and he was seen to give two very small gasping movements, with subtle movements of the shoulder. Although the clinical status was not consistent with brain stem death, Dr Playfor was of the opinion that the tests demonstrated devastating brain injury to Z’s brain stem itself.
 He was reviewed later in May by another consultant paediatric intensivist who noted that he was not responsive to pain or deep stimulation and had suffered an acute and very significant hypoxic-ischemic brain injury causing widespread and irreversible cortical damage. Dr Mok added that it was possible that with drainage of the hydrocephalus early in January Z may have been able to have been weaned off the ventilatory support then, but it was unclear that that was in fact the case and Z would have had profound and significant global impairment of his neurological and cognitive functioning, which was and is irreversible.
 Dr Playfor carried out a very thorough and comprehensive clinical examination, which I will not reproduce in full here. However, I will read from the summary at part 4 of his report and it reads as follows:
“It is clear to me that Z has suffered catastrophic irreversible hypoxic- ischemic injury to his brain during periods of cardiac arrest on 5 and 6 December 2013. There has been the most enormous destruction of most of Z’s brain tissue including areas of his brain stem, which means that he is able to display only the slightest degree of response to outside stimulation.
“I am concerned that the characteristic repeated pattern of small movements of Z’s head, together with the slightly more animated mouthing movements and increased protrusion of the tongue which Z displays after deep tracheal suction suggests that he is able to perceive the pain that we know is associated with this clinical intervention, required several times each day.
“There is no evidence that Z is able to hear, see or interpret anything of the outside world. It is my opinion that Z has no awareness of himself as a person and is unable to derive pleasure from any interactions with his environment or his family.
“The degree of damage to Z’s brain is so severe that there is no prospect he will ever recover any of these functions.
“Z’s clinical condition is consistent with the no purpose situation defined by the Royal College of Paediatrics and Child Health (RCPCH) in their withholding or withdrawing life sustaining treatment document published in May 2004 (1):
‘Although the patient may be able to survive with treatment the degree of physical or mental impairment will be so great that it is unreasonable to expect them to bear it.’”
 Dr Playfor then continued:
“In these circumstances we are compelled to consider what is in Z’s best interests in a manner which encompasses medical, emotional and all other welfare issues. Whilst understanding that there should be a strong presumption in favour of the course of action that would prolong life it is my opinion that continued mechanical ventilation is merely sustaining life and will neither restore health nor confer any other benefit, and therefore is no longer in Z’s best interests. This conclusion coupled with the fact that Z appears to be able to perceive the pain that is associated with the deep tracheal suction required several times each day suggests to me that mechanical ventilation should be discontinued as soon as possible with palliative procedures in place to ensure Z’s dignity, comfort and analgesia.”
 Finally he said in his summary:
“If Z were to be extubated in a controlled palliative manner with infusions of opiates and benzodiazepines available to ensure his comfort and analgesia, it is my opinion that he would most likely die within an hour of extubation, possibly within a few minutes.”
 Dr Playfor considered additional factors and I need to take them into account also and I quote again from his report: “Z has pronounced and progressive hydrocephalus. This makes caring for him increasingly undignified and more challenging practically. Whilst this is not my area of expertise, it is my opinion that no form of ventricular shunting procedure would be of any benefit to Z.”
 He continued:
“Z has sustained a considerable degree of lung injury as a result of his pre-existing chronic lung disease (due to prematurity), which was exacerbated by an episode of acute respiratory distress syndrome (ARDS) which occurred as a result of the hypoxic ischemic-injury he sustained during periods of cardiac arrest on 5 and 6 December 2013. He requires a considerable amount of ventilator support with a peak pressure of 30 mmHg His clinical features are consistent with the chronic phases of ARDS; characterised by persistent low lung compliance, extensive pulmonary fibrosis with obliteration of normal alveolar architecture and widespread emphysema with the development of cystic lung changes. A thorough respiratory assessment (including review by a Paediatric Respiratory Consultant a CT chest scan and a bronchoscopy) would be necessary to confirm those suspicions; but these investigations would be futile, in my opinion, given the overwhelming devastating neurological injury that Z has suffered.
“Even taken in isolation the severe degree of chronic lung disease that Z suffers from represents a significant clinical problem of such magnitude that the value of continued active ventilatory therapy may be called into question.”
 I have read Ms T’s statement with care and I read it again overnight. She gave oral evidence and I find all her evidence to be moving and redolent of the dignity described in the guardian’s report to which I have already referred. She loves Z very much and feels out of love and with her faith in God it is wrong for her to allow the life support to be withdrawn. She does not believe that she has the right to do so.
 Mr V is of the same mind. They both strongly believe that Z responds to them, albeit in very small ways and is aware of their presence. They believe, given time, he will improve or that there may be a miracle and I can fully understand and appreciate why they believe that. They are not being at all unreasonable, nor are they ignorant of Z’s plight, but they do not want to rob him of the slightest chance of recovery or improvement. They are entitled to disagree with the medical prognosis and in keeping with their behaviour throughout; they do not seek to go behind the diagnosis itself. Their refusal is an important consideration which I weigh in the balancing exercise that I must carry out, but what I decide must be in the best interests of Z and may over rule their decision.
 I have considered the case law to which I have been referred and there is no dispute as to the law or as to the test which I must apply which is the best interests test and I must include all the factors, not just medical, but emotional and social as well. In particular, I am mindful of the guidance of the Court of Appeal in the case of Wyatt v. Portsmouth NHS Trust  EWCA 1181 and in the case of An NHS Trust v B and others  EWCA 507. To paraphrase the words of Holman J in the latter case it is my task to decide where the objective balance of Z’s best interests lies. If I decide that it is not in his best interests overall to continue with a course of treatment, in this case mechanical ventilation, then it will follow, as a matter of law that the court can declare that it is lawful to withdraw the ventilation. In the case of Wyatt the Court of Appeal suggest that a clear and helpful way of dealing with the balancing exercise was to draw up a balancing sheet and I will do so.
 There is a strong presumption in favour of action which prolongs life and that is my starting point. However, the presumption is rebuttable when considered with and against medical, emotional and other welfare issues. It is a balance. On the one hand I start with the presumption that Z himself would want the continuation of life and that he has shown himself to be tenacious and a real fighter with a strong survival instinct to survive as long as he has. His parents and others have observed small movements to his head and to his tongue.
 He would continue to have the love and devotion of his parents; he does not need much in the way of drug treatment and his parents have the support of their extended family members, which he in turn benefits from. His parents are convinced that he responds to them and benefits from their presence. It is more likely than not, that he does not suffer much pain most of the time, but there is the evidence he may do so during treatment as described by Dr Playfor.
 Against this I must weigh the profound and extensive injury to his brain and brain stem and the unanimous and unchallenged medical opinion that the effects of the brain injury are irreversible. This opinion includes the unanimous opinion of the five treating consultants that continued treatment serves no purpose and confers no benefit on the baby. This view is confirmed by outside clinicians and the medical opinion of Dr A and by Dr Playfor. Further, there has been no significant improvement since December 2013 and he has since suffered and developed severe hydrocephalus.
 The only sensation that he is capable of responding to seems to be pain and the deep suction several times a day produces that reaction. This repeated suction is therefore both invasive and painful. Z is unable to swallow and is fed through a nasal gastric tube which is replaced regularly in what is also known to be an invasive and painful process. He is likely to suffer all the effects of lack of oxygen and risks further deterioration of all his vital organs as a result including his heart, his kidneys, his lungs and his bowels. Prolonged ventilation will itself lead to infection, lung injury and trauma to the soft tissues through the continued invasive procedures such as suction to which I have already referred.
 Z has already suffered considerable harm through the medical intervention that he has received and risks further intervention to keep him alive. He shows no awareness of himself or of his environment and cannot interact with anyone or respond to them. The hydrocephalus he has suffered is severe and the reservoir to drain it, which is itself a further invasive procedure, has not resulted in any reversal of his condition or improvement, except a cosmetic one. Very sadly, not only has the baby not recovered or shown any signs of recovery, when his condition is considered overall it has, in fact, deteriorated.
 On balance I am driven to conclude that the mechanical ventilation is only just sustaining life with no other benefit. When I consider his best interests holistically, the life support confers little benefit as it prolongs all the likely discomfort and possible pain and increases the probability of further infection leading to further invasive treatment and complications which will itself contribute to further physical deterioration without any real hope of restoring his health. His brain injuries are so profound, so catastrophic and the likelihood of further deterioration to his brain from hydrocephalus and the probability of lung infection and injury with continued ventilation all add to the conclusion that on balance not only is there no benefit, but in fact there is a strong probability of further pain, suffering and deterioration. Very sadly and with great reluctance I grant permission to withdraw the mechanically assisted ventilation.
 I know that the baby’s parents will continue to do all they can for him and I urge the medical staff to include them as I am told they intend to do, with each step that now must be taken to keep Z comfortable and to treat him with the same dignity shown by his parents throughout these proceedings.
 That is my judgment.
 There will be a reporting restrictions order in place. All parties including the parents and those representing the baby have asked that both his parents and the baby himself have their privacy and their identities protected by the reporting restrictions being kept in place. There has been no application by anyone to the contrary and it is in keeping with previous decisions of this court, the Court of Appeal and the House of Lords that the identity of patient and his or her family remain protected as the public interest lies not with identity but with general issues in these cases which may lead to the shortening of a person’s life. For that reason this case was heard in open court.
 The parents asked for the restrictions in respect of the NHS Trust to be lifted on the 30th September 2014. This was resisted by the Trust and by the representatives of the baby for one reason only to protect possible identification of the child until after he dies. I consider that such an approach is proportionate. The trust will be identified then; a mechanism will be put in place to alert the media. Until that time the baby and his parents are wholly entitled to their privacy and for that privacy to be protected.