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22 JUL 2015

Kings College Hospital NHS Foundation Trust v Y [2015] EWHC 1966 (Fam)

Kings College Hospital NHS Foundation Trust v Y [2015] EWHC 1966 (Fam)
(Family Division, MacDonald J, 8 July 2015)

Medical treatment – Consent – Withdrawal of life sustaining treatment – Application for declarations of lawfulness

The court granted the NHS Trust application for a declaration of lawfulness in relation to withholding life-sustaining treatment from a severely ill 7-year-old child.
Case No: FD15P00291
Neutral Citation Number: [2015] EWHC 1966 (Fam)


Royal Courts of Justice

Date: 08/07/2015

Before :


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Between :


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Y (By Her Children’s Guardian)
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Mr Conrad Hallin (instructed by Kings College Hospital NHS Foundation Trust Legal Services) for the Kings College Hospital NHS Foundation Trust
Ms Penny Logan (of Cafcass Legal) represented Y through her Children’s Guardian
Miss Rebecca Clark (instructed by Stephensons) represented MH

Hearing dates: 2 July 2015

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The Honourable Mr Justice MacDonald

[1] On 23 June 2015 following an ‘Out of Hours’ telephone hearing I determined an emergency application by Kings College Hospital NHS Foundation Trust in respect of a 7 year old child, Y. The orders I made late on the evening of 23 June and my reasons for making those orders are set out in detail in my judgment of 24 June 2015 (see [2015] EWHC 1920 (Fam)). This judgment should be read in conjunction with my judgment of 24 June 2015.

[2] As set out in my judgment of 24 June 2015, the declarations made following the ‘Out of Hours’ hearing were as follows:

i) that it was lawful for the Trust, being in Y’s best interests, to withhold from Y endotracheal intubation and invasive ventilation;

ii) that it was lawful, being in Y’s best interests, for her not to receive cardio-respiratory resuscitation (CPR) and resuscitation drugs;

iii) that in the event that Y became severely distressed and / or was in pain due to further deterioration of her medical condition, it was lawful and in her best interests for her to receive pain medication (such as morphine) and / or sedation (such as Midazolam) for the purpose of relieving her pain and or distress, accepting that, in an end of life situation, such medications may reduce her respiratory drive and might therefore shorten her life (as a consequence and not as an aim).

[3] The matter returned before me for a hearing within normal court hours on 26 June 2015 to consider directions and the continuation of the declarations. At that hearing I directed that the Trust request updating reports from Professor Andrew Bush of Imperial College London, Consultant Paediatric Chest Physician and Professor of Paediatric Respiratory Medicine and Dr Heinz Jungbluth, Consultant Neurologist (both of whom have been involved in the treatment of Y since shortly after her birth). I listed the matter for final hearing today.

[4] At this hearing I am asked to make final the declarations that I made initially on 23 June 2015.

[5] The NHS Trust is once again represented by Mr Hallin of counsel. Miss Rebecca Clark of counsel represents Y’s father, MH. Y is represented by Ms Penny Logan of Cafcass Legal through her children’s guardian, Mrs Odze from the Cafcass High Court Team.


[6] Y is an 7 year old girl with a diagnosis of Spinal Muscular Atrophy type 1. The detailed background to this matter is set out in my judgment of the 24 June 2015 and I shall not repeat it in full here.

[7] It is however important to record two aspects of the background to this case that have now come into sharper focus upon the receipt of the report of Professor Andrew Bush.

[8] Professor Bush is a senior Consultant Paediatric Chest Physician at the Royal Brompton Hospital and has been for 25 years. He is also Professor of Paediatrics at Imperial College and Professor of Paediatric Respirology at the National Heart and Lung Institute. Professor Bush has been responsible for the respiratory aspects of Y’s treatment since 2008.

[9] First, the report of Professor Bush makes clear that whilst Y’s medical condition, Spinal Muscular Atrophy type 1, results in extensive muscle weakness which impacts adversely on the functions of breathing, coughing and swallowing, it does not affect intelligence. Within this context, Professor Bush makes clear that, prior to the medical difficulties that commenced in March of this year, Y was an alert, interactive, happy and smiling child who had a good quality of life despite her extensive muscle weakness.

[10] Second, in his report Professor Bush describes eloquently the degree of love and commitment that Y’s parents and family have demonstrated during the course of Y’s childhood, from which deep affection and dedication Y has benefited and from which she continues to benefit. It should further be noted that the inestimable contribution that Y’s parents have made to her welfare has been achieved in the context of the parents having a number of children and Y having a sibling who is also very ill. Professor Bush describes the position thus:

“I should like to give context to this report by paying unqualified tribute to the care, love, devotion and expertise which Y’s family lavished on her in supporting her through these technically demanding treatments for many years. Without their loving care and attention, Y would undoubtedly have died many years ago.”

[11] As set out in my first judgment in this case, since March 2015 Y’s condition has deteriorated in an acute manner, culminating in two out of hospital episodes of cardio-respiratory arrest in late March and early April. EEGs performed on Y following her resuscitation from these episodes indicated that Y had developed a severe encephalopathy with no eleptiform activity. CT and MRI scans confirmed hypoxic ischaemic change in Y’s brain. It was the assessment of Y’s treating doctors that Y’s neurological condition had deteriorated very significantly following her out of hospital cardio-respiratory arrests. Y’s treating consultant paediatric intensivist, Dr E, was of the view that the severe hypoxic ischaemic injury that has resulted in Y’s severely altered neurological state is irreversible.

[12] In particular, whilst Y had previously been verbally communicative and had made use of an iPad, Dr E noted that as a consequence of the insults to her brain Y now made no attempt at communication and showed no evidence of cognitive activity. He considered that she no longer made any purposeful movement, that she was unable to communicate and that she was unable to fix and follow. It was also the case that Y had no independent cough reflex and therefore was unable to clear her own secretions.

[13] By reason of her stark neurological deterioration Y remained in the paediatric high dependency unit and dependent on bi-level positive airway pressure, regular suctioning, chest physio and cough assist. Y had input from the respiratory, palliative care and critical care teams.

[14] Whilst consideration was being given to whether a plan could be implemented to discharge Y home, on 23 June Y’s condition deteriorated significantly to the point where Y required constant non-invasive ventilation. On the evening of 23 June Dr E considered that Y would likely die at any time if not given invasive ventilation in the form of intubation and artificial ventilation. He was very firmly of the view that such invasive ventilation would not be in Y’s best interests in circumstances where she would derive no benefit from it beyond her life being prolonged artificially in her irreversible neurological state. Dr E was further very strongly of the view that any attempt at CPR should Y suffer cardio-respiratory arrest would not be in her best interests.

[15] The parents disagreed with this evaluation and considered that Y should be intubated and receive invasive ventilation, and should receive CPR if necessary, believing that this treatment would enable Y to recover to the position she was in prior to her cardio-respiratory arrest at the beginning of April and to return home.

[16] As already recounted, on 23 June I determined the dispute that had crystallised between Y’s treating doctors and her parents and granted the declarations I have already set out above for the reasons contained in that judgment.

[17] By the time of the hearing on 26 June 2015 the father agreed that the declaration that it was lawful and in Y’s best interests not to receive CPR and resuscitation drugs in the event of cardiac arrest, and the declaration that in the event that Y became severely distressed and / or was in pain due to further deterioration of her medical condition, it was lawful and in her best interests for her to receive pain medication and / or sedation for the purpose of relieving her pain and or distress, were declarations that were properly made and should continue.

[18] The father however contended that Y should, albeit now for a defined and limited period, be intubated and invasively ventilated in order to determine whether such treatment would be effective. Within this context the father contended that before deciding whether to make the declaration as to endoctrachael intubation and invasive ventilation ‘final’ (the effect of which would be to authorise the treating doctors not to pursue the time limited course of treatment sought by the father) the court should secure updated second opinions from both Dr Jungbluth and Professor Bush.

[19] Having undertaken welfare enquiries and having visited Y in Hospital, Mrs Odze from the Cafcass High Court Team was of the view that each of the declarations made ‘Out of Hours’ were properly made and should continue. The Children’s Guardian was however concerned to ensure that an updating second opinion was obtained from Professor Bush confirming Y’s current respiratory position.

[20] As already stated, given the remaining issue between the father and the Trust as to the efficacy of a time limited period of intubation and invasive ventilation, given that the question of the efficacy of such a time limited procedure turned on the question of the respiratory and neurological consequences of the same and in circumstances where the initial second opinions Dr Jungbluth and Professor Bush were given on 10 and 13 April 2015 respectively based on Y’s situation at that time, I directed that the Trust request updating reports from Dr Jungbluth and Professor Bush and listed the matter for final hearing. I have already extracted some passages from the report of Professor Bush above.

[21] The report of Dr Jungbluth is dated 30 June 2015. Dr Jungbluth is a consultant paediatric neurologist and a reader in paediatric neurology with a special interest in neuromuscular disorders. Dr Jungbluth has been involved in the care of Y since her initial presentation in 2008.

[22] Setting out the detailed history of Y’s condition, Dr Jungbluth confirms that Y’s spinal muscular atrophy has resulted in her being always profoundly weak. As at October 2014 Dr Jungbluth confirms that Y was unable to stand or sit, could only be fed through a feeding tube and required mechanical support for her breathing, primarily during the night.

[23] Describing the consequences of the two out of hospital cardio-respiratory arrests suffered by Y in March and April of this year, Dr Jungbluth confirms that Y has suffered severe additional brain damage as revealed by the CT and MRI results described above. Dr Jungbluth concludes that this damage has further affected her already markedly compromised ability to move, to swallow, to clear secretions and to protect her own airway. Dr Jungbluth notes that the hypoxic ischaemic damage to Y’s brain has also severely affected her ability to communicate, which ability had, up until recently, been well preserved.

[24] Based on his assessment of the CT and MRI brain imaging, and taking into account her principal diagnosis of spinal muscular atrophy, Dr Jungbluth concludes that, whilst there is potential for Y to suffer further neurological deterioration, there is no hope for neurological improvement.

[25] Within this context, Dr Jungbluth expresses the clear view that whilst it is appropriate to keep Y comfortable and supported within the limits agreed by the other members of her medical and multidisciplinary team, in his professional opinion it is not in Y’s best interests to re-intubate her and to keep her permanently ventilated. Dr Jungbluth’s clear opinion is that this course of action would prolong suffering and would risk keeping Y in a permanent vegetative state.

[26] Within the context of Y’s neurological deterioration as described and confirmed by Dr Jungbluth, in his report dated 30 June 2015 Professor Bush concludes that in circumstances where a tracheotomy is not indicated for Y (because it may not prolong her life and because it risks her progressing to a ‘locked in’ state with complete immobility of her facial muscles and a total inability to communicate) the respiratory prognosis for Y is extremely poor.

[27] Having regard to the opinion of Dr Jungbluth that Y has suffered a severe and irreversible brain injury that would not be changed by a period of re-intubation, Professor Bush is of the opinion that re-intubation would only prolong the act of dying with re-intubation, like a tracheotomy, merely maintaining Y in a prolonged vegetative state.

[28] In concluding his opinion, Professor Bush places Y’s best interests within the context of the recent guidance from the Royal College of Paediatrics and Child Health to which Dr E referred during the hearing on 23 June 2015, namely ‘Making Decisions to Limit Treatment in Life-limiting and Life-threatening Conditions in Children: a Framework for Practice’ published in March 2015. Professor Bush quotes from the following paragraph of that guidance:

“C. Lack of ability to derive benefit In other children the nature and severity of the child’s underlying condition may make it difficult or impossible for them to enjoy the benefits that continued life brings. Examples include children in Persistent Vegetative State (PVS), Minimally Conscious State, or those with such severe cognitive impairment that they lack demonstrable or recorded awareness of themselves or their surroundings and have no meaningful interaction with them, as determined by rigorous and prolonged observations. Even in the absence of demonstrable pain or suffering, continuation of LST may not be in their best interests because it cannot provide overall benefit to them. Individuals and families may differ in their perception of benefit to the child and some may view even severely limited awareness in a child as sufficient grounds to continue LST. It is important, here as elsewhere, that due account of parental views wishes and preferences is taken and due regard given to the acute clinical situation in the context of the child’s overall situation. Although it is possible to distinguish these different groups of decisions to limit LSTs that are based on quality-of-life considerations, in practice combinations may be present. For example, a child or infant in intensive care may have sustained such significant brain injury that future life may provide little benefit, while both intensive treatment and future life are likely to cause the child substantial pain and distress.”

[29] Professor Bush is of the opinion that Y’s situation is akin to the position described in the foregoing paragraph in that Y is a child in intensive care who has sustained such a significant brain injury that she will derive no overall benefit from further invasive treatment. Within this context, Professor Bush reaches the conclusion that further invasive treatment for Y, whether by re-itubation or tracheotomy, is not in her best interests.

[30] Having regard to the opinions expressed by Dr Jungbluth and Professor Bush, and to the updated report from Dr E provided for the hearing on 26 June 2015 (which substantially reiterates his evidence given at the hearing on 23 June 2015), Mr Hallin on behalf of the Trust submits that the interim declarations made on 23 June 2015 should now be made final. Given the unanimity of the medical opinion in this case, the Children’s Guardian likewise submits that it is in Y’s best interests for the declarations to be made final.

[31] Having considered the reports provided by Dr Jungbluth and Professor Bush, and having had the opportunity to consider that evidence with his legal advisers, the Father now adopts a position whereby he no longer actively contests the application brought by the Trust for the declarations. He however cannot bring himself to agree to the declarations. He invites the Court to make a decision in the best interests of his daughter.

[32] On the totality of the evidence before the Court I am satisfied that the declarations sought by the Trust remain in Y’s best interests and that those declarations should be made final at this hearing.

[33] Whilst the father does not now oppose that course of action, given that he does not, understandably, feel able to offer his consent to it, and given the gravity of the decision that it is accordingly for the Court to make in Y’s best interests, it is appropriate that I set out my reasons for reaching the conclusion I have in a little detail. It is also proper for the Court to record in full the inestimable contribution Y’s parents and family have made to her welfare over the course of her life.


[34] The applicable legal framework is that set out in my judgment of 24 June 2015. I apply that legal framework and do not repeat it here. In addition to that legal summary, Ms Logan in her Position Statement again reminds the Court of the description of the balance sheet approach set out by Thorpe LJ in Re A [2000] 1 FLR 549 at 560:

“there can be no doubt in my mind that the evaluation of best interests is akin to a welfare appraisal.…Pending the enactment of a checklist or other statutory direction it seems to me that the first instance judge with the responsibility to make an evaluation of the best interests of a claimant lacking capacity should draw up a balance sheet. The first entry should be of any factor or factors of actual benefit… Then on the other sheet the judge should write any counterbalancing dis-benefits to the applicant. An obvious instance in this case would be the apprehension, the risk and discomfort inherent in the operation. Then the judge should enter on each sheet the potential gains and losses in each instance making some estimate of the extent of the possibility that the gain or loss might accrue. At the end of that exercise the judge should be better placed to strike a balance between the sum of the certain and possible gains against the sum of certain and possible losses. Obviously, only if the account is in relatively significant credit will the judge conclude that the application is likely to advance the best interests of the claimant.”


[35] As I recognised at the outset of the analysis contained in my first judgment in this case, there is a strong presumption in favour of a course of action that will prolong life, a strong presumption that flows from the recognition and acknowledgment of the sanctity of life.

[36] The principle of the sanctity of life derives in part from life’s unique value. In my first judgment I recognised that Y’s life is valuable in many contexts. It is valuable to Y, it is valuable to her parents and it is valuable because Y’s life adds to the collective human experience and history.

[37] The evidence that has been produced since the hearing on 23 June 2015 has further emphasised the value of Y’s life to herself and to her family. The dedication of Y’s parents and family to the care of Y, which unremitting love and devotion the medical evidence suggests has prolonged Y’s life by many years, speaks eloquently to the value that Y’s parents and family place on Y’s life and to the value of Y’s life as a precious gift to be sustained and enhanced. Within this context I again recognise that, all other things being equal and if competent to choose, Y would choose to live within her loving and caring family.

[38] The evidence that has been received by the Court since 23 June 2015 has also reinforced my previously expressed view that, within the foregoing context, it cannot in this case be said that the quality of Y’s life is one that must inevitably be assessed as poor. I remind myself in particular that both the quality of life and its tolerability have strong subjective elements to them and that those who have cared for a disabled child often have different perceptions of ‘quality of life' and ‘intolerability' to those who have not (see Portsmouth NHS Trust v Wyatt and Wyatt, Southampton NHS Trust Interventing [2005] 1 FLR 21 at [30]).

[39] The evidence of Professor Bush is clear that, prior to her medical deterioration in March and April of this year, Y was an alert, interactive, happy and smiling child who had a good quality of life despite her extensive muscle weakness. Having regard to this history, and that given by the father during the hearing on 23 June 2015, it cannot be said that the burden of Y’s disability was one that, prior to the episodes of cardio-respiratory arrest in March and April this year, resulted in Y having a poor quality of life. Indeed, quite the contrary.

[40] Whilst it is the case that, by reason of that medical deterioration, Y no longer benefits from being alert and interactive, it is plain on the evidence gathered since 23 June that, as Dr E has conceded, Y’s quality of life from her perspective continues to be enhanced by a loving and supportive family who remain acutely concerned with her wellbeing and diligent in seeking to ensure that everything that can be done for her is done. In this case it is important to attach significant weight to the importance of Y’s family life and I again do so.

[41] It is of continuing importance in this case to recognise the significance of the wishes of the parents of Y. It is plain from the evidence of Professor Bush and Dr E that Y’s parents have been doughty defenders of their daughter’s best interests over many years, to her undoubted benefit. The views of the parents in this case must once again be accorded great respect not only because that is the principled approach to take but because, as confirmed by the evidence of Professor Bush, these parents have, by their unremitting dedication to the best interests of their daughter, proved themselves to be parents who should be listened to with great care when it comes to the welfare of Y.

[42] In my judgment of 24 June I expressed the need for caution in respect of the views then being expressed by the father on behalf of Y’s mother and family. That caution derived from what I assessed to be the father’s apparent lack of understanding of the reality of Y’s situation and what I found to be his completely unrealistic expectations of what further intubation and invasive ventilation could achieve for Y. I considered that apparent lack of understanding to have been exemplified by the father seeking to justify the use of intubation and invasive ventilation. The father stated that this should be done so that “she can go home, she can go to school, be with her brothers and sisters”.

[43] Having reflected further on my conclusion that the father displayed an apparent lack of understanding, and within the context of his experience of a long history of medical treatment being of considerable benefit to Y, I believe that assessment now to have been too harsh on my part. A better description of the father’s position as then stated to the Court is that his views were an expression of an understandable but forlorn hope born of a deep love for his daughter. I am reinforced in this view having considered the views expressed by the father before the court today through the Position Statement filed on his behalf.

[44] As already recorded, at the hearing on 26 June the father told the court that he no longer opposed the declarations concerning CPR and the administration of medication for pain and discomfort. Today the father makes clear that, having read the reports now provided by Dr Jungbluth and Professor Bush, he does not wish to actively contest the Trust’s application for declarations in the terms sought. The father has no real wish to see Y attached indefinitely to a ventilator. He is aware that Y’s condition is grave and that each day with her is precious. The father understands the clinical reasons against a further short period of re-intubation and invasive ventilation.

[45] The father cannot however bring himself to give his consent to the declarations being made. He wished to make clear to me that both he and the family believe, in accordance with their religion, that life should be preserved. I also have a suspicion that whilst he tells me he is not asking the Court to make decisions on the basis that time should be allowed for a miracle to occur, the father cannot quite bring himself to quiet the flattering voice of hope, which voice tells him that perhaps a miracle might yet happen.

[46] The position adopted by the father before the court today is eminently reasonable and wholly understandable. It represents a continuation of the love and dedication that he and his family have shown to Y throughout her life. I have paid very careful regard to what the father has said to me, both in person at the hearing on 23 June and through counsel today. I acknowledge that what he has said has been said on behalf of himself, his wife and the entire family.

[47] Finally, on the positive side of the balance sheet, and as recognised in my first judgment, it remains the case that, within the context of the presumption in favour of a course of action that will prolong life, in this case the intubation and invasive ventilation of Y would have had the effect of prolonging her life, together with the value and those positive qualities of that life that I have recounted above.

[48] Notwithstanding the positive factors set out above, in my judgment there remain in this case very considerable and weighty factors on the other side of the welfare balance sheet, which factors now tend, given the evidence provided to the Court by Dr Jungbluth and Professor Bush, even more heavily towards the making of the declarations sought by the Trust in this case.

[49] The evidence of Dr Jungbluth and Professor Bush further confirms my conclusion that Y’s current quality of life was now very poor from a medical standpoint. Spinal muscular atrophy is an incurable neuromuscular disease. Whilst prior to March 2015 that disease had not prevented Y from living a very happy and engaged life with her family, the disease now places a heavy burden on Y by virtue of the manner in which the effects of that condition have been exacerbated by Y’s recent deterioration and by virtue of the nature of the invasive medical treatment that is now required to keep her alive in consequence thereof.

[50] As I observed in my first judgment and as is still the case, whether the medical treatment contended for by the parents would represent an unacceptable burden for Y in the sense of causing her pain is difficult to establish on the evidence before the court. It is unclear in this case, due to her stark neurological deterioration, how aware Y is and whether she can feel pain and / or psychological distress.

[51] Notwithstanding the lack of clarity on that issue, and as the Royal College Guidance (which guidance is entitled to the closest attention and respect) makes clear in the passage cited above, even in the absence of demonstrable pain or suffering, the administration of life sustaining treatment to a child may not be in his or her best interests where it cannot provide overall benefit.

[52] The evidence provided by Dr Jungbluth and Professor Bush has further confirmed my conclusion that intubating and invasively ventilating Y is treatment from which Y will be unable to derive benefit. Specifically, I am satisfied that the evidence confirms the opinion of Dr E that Y’s neurological deterioration is irreversible in nature and that, by definition, Y’s deterioration will not be reversed or ameliorated by a further time limited period of intubation and invasive ventilation.

[53] The evidence of Dr Jungbluth and Professor Bush makes clear that such treatment would prolong Y’s life but would not alter her prognosis. Indeed, in the view of Dr Jungbluth such a course of action would in fact prolong suffering and would risk keeping Y in a permanent vegetative state. In the view of Professor Bush re-intubation at this stage would only prolong the act of dying.

[54] Within this context I once again recall the evidence of Dr E that, following an episode of deep sedation in order to secure intubation and invasive ventilation, the likely outcome will be an increasing cycle of intubation and extubation leading eventually to the need for permanent intubation and artificial ventilation. Thereafter the likelihood is that Y will be confined permanently to a paediatric intensive care unit. This would be the position for an unquantifiable period.

[55] In the circumstances, I remain satisfied on all the evidence now available to me that were Y to be re-intubated and invasively ventilated, even for a time limited period, not only would such treatment result in no benefit to Y but would also result in the imposition on Y of a grave, and ultimately irreversible, burden of treatment that simply cannot be said to be in her best interests even when weighing in the balance the positive entries as articulated above. Not only would the treatment be ineffective, it would be of no benefit in circumstances where the prolonging of Y’s life consequent upon such treatment would lead simply to Y being maintained in her current and irreversible neurological state/

[56] Finally, the evidence of Dr Jungbluth and Professor Bush further reinforces the conclusions I reached in my first judgment regarding the need to ensure the dignity of Y as a human being. In Portsmouth NHS Trust v Wyatt and Wyatt, Southampton NHS Trust Interventing [2005] 1 FLR 21 Hedley J observed as follows at [28]:

"Given that death is the one experience (other than birth) that all humanity must share, no view of life that does not include a contemplation of the place of death, even in a child, can be complete. As a society we fight shy of pondering on death, yet inherent in each of us is a deep desire both for oneself and for those we love for a ‘good' death. It seems to me, therefore, that in any consideration of best interests in a person at risk of imminent death is that of securing a ‘good' death. It would be absurd to try to describe that concept more fully beyond saying that everyone in this case knows what it means – not under anaesthetic, not in the course of painful and futile treatment, but peacefully in the arms of those who love her most.”

[57] Having regard to the evidence of Dr Jungbluth and Professor Bush that re-intubation and invasive ventilation would prolong Y’s suffering and the act of dying and would risk keeping Y in a permanent vegetative state, I am reinforced in my conclusion that the course favoured by Y’s doctors is the one most likely to ensure that Y enjoys the greatest level of dignity in death. I remind myself once again of Dr E’s evidence that such a course would allow the parents to be and to remain physically much closer to Y than if she was intubated and invasively ventilated at this point in time.


[58] As I recognised during the course of my first judgment in this matter, the strong presumption in favour of a course of action that will prolong life is not an irrebuttable one. This position reflects the fact that life, as precious as it is, cannot be, and indeed should not be preserved at all costs in the face of its natural conclusion.

[59] Having considered carefully the further reports of Dr Jungbluth and Professor Bush and again having regard to all of the evidence previously available to the court, having regard to the strong presumption in favour of prolonging life and having regard to Y’s best interests as my paramount consideration, I remain of the view that any further aggressive invasive treatment, even if having the result of prolonging her life, cannot not be said to be in Y’s best interests.

[60] Exercising my objective and independent judgment, and as I think the father now, to his great credit, in his heart recognises, I am clear that it is not in Y’s best interests to embark on a course of intubation and invasive ventilation that will act only to prolong Y’s passing and thus the suffering consequent thereon.

[61] Whilst it is the case that not intubating and invasively ventilating Y at this stage will mean that an action that would prolong Y’s life will not be taken, I continue to be satisfied that the burden imposed on Y by taking such an action would outweigh, by a significant margin, the benefits that will accrue to Y by prolonging her life.

[62] In concluding his report Professor Bush encapsulated the intensely human dilemma that lies at the centre of cases in which the wishes of a loving and devoted family differ from the carefully considered medical opinion of treating doctors as to a gravely ill child’s best interests. Professor Bush said this:

“In ending this report, I wish to acknowledge again the tremendous commitment that her family have shown to Y’s care over many years, which have given her years of good quality life which she otherwise would not have had. I acknowledge also their grief at Y’s present situation and their indubitable wish to do the best for their child. It is a source of great distress to me that I find that my views are in opposition to those of a family for whom I have the most profound respect. However, I believe that my duty to Y herself is paramount.”

[63] In concluding this judgment I can do little better than to adopt and endorse the words of Professor Bush.

[64] It was with great sadness that I found myself driven to make the declarations that I did on 23 June 2015 and it is with equal sadness that I am today driven to conclude that those declarations should continue. I pay tribute to the love and dedication of Y’s parents and family whose care and devotion has sustained and enriched immeasurably the most precious life of Y. The parents and the family have my profound respect.

[65] I am however, with a very heavy heart, satisfied on the evidence before the Court that declarations in the terms set out in the order of 23 June 2015 remain in Y’s best interests. Accordingly, I continue the declarations made on 23 June 2015 in the terms of the order prepared by the Trust for today’s hearing.

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