England and Wales High Court (Family Division) Decisions

IN THE HIGH COURT OF JUSTICE

		Royal Courts of Justice Strand, London, WC2A 2LL
		3rd October 2014

MR JUSTICE MOOR:-

1. On 19th August 2014, I heard an application by Kirklees Council for various declarations in relation to a young baby boy, SE, who was desperately ill in hospital. In essence, Kirklees applied for a declaration that it was not in SE's interests to receive further life sustaining treatment. By the time the case was heard, the Local Authority applied for a further declaration, namely that it was lawful for his treating clinicians to provide him with palliative care only.
2. SE had been an inpatient in hospital since he was born prematurely in April 2014. He had multiple medical difficulties. He suffered from chronic lung disease (an over inflated left lung and an under inflated right lung). He had multiple cardiac abnormalities (ventricular septal defect, atrial septal defect and patent ductus arteriosus), right duplex kidney and absent left kidney, Hemi vertebrae, fused ribs and heart failure impacting on his ability to gain weight.
3. The application was supported by the Third Respondents, Leeds Teaching Hospital NHS Trust. SE had been transferred to the neo-natal unit at one of their hospitals, Leeds General Infirmary. Indeed, I heard oral evidence from two of their consultants, namely Dr Hannah Shore, a consultant neonatologist and Dr Philip Chetcuti, a consultant paediatrician. I also heard oral evidence from a third expert, Dr Martin Ward Platt, who had been instructed jointly by all parties to give an independent further opinion. The experts were all in agreement that the declarations sought were in the best interests of SE as the treatment he had been receiving was very distressing to him and was ultimately futile as there was no chance of recovery and no purpose to the treatment being continued. Dr Ward Platt added that he felt there was an element of it being an "unbearable situation" for SE.
4. SE's mother, RE, was the First Respondent (hereafter "the Mother"). Although very difficult for her, she had also given instructions to her lawyers to accept the medical opinion. She said that she did not want SE to suffer further. This went to her credit.
5. SE's father was believed to be SA. He did not play any role in the proceedings and had not responded to notification of the care proceedings previously taken by Kirklees in relation to SE. He was, however, briefly present in the hospital the afternoon after I heard the case.
6. SE's Guardian, Steven Anderson, quite properly took the view that the matter should be fully explored before such serious declarations were made. His counsel, Ms Martha Cover, tested the evidence fully by cross-examining the doctors. Having done so, the Guardian accepted fully the need for the declarations sought.
7. I therefore approved an order that declared that it was not in SE's best interests to receive further life sustaining treatment. I also declared that it was lawful and in his interests for the treating clinicians to provide him with palliative care only and, accordingly, the withholding and the withdrawing of life sustaining treatment were lawful and in his best interests, provided always that the measures and treatments adopted were the most compatible with maintaining his comfort and dignity.
8. It was also recorded that the treatments and/or actions contemplated in Paragraph 8 of the second statement of Dr Shore were permitted under the terms of the declarations I made. Paragraph 8 was in the following terms:-

"We would plan to reduce his respiratory support to enable him to be taken outside of the neonatal unit for walks or even discharged to a hospice for ongoing care. We would continue to feed him. We would continue to provide symptom relief should he become agitated in the form of oromorph, chloral hydrate or buccal midazolam. If he got a chest infection, we would treat him with oral rather than intravenous antibiotics to save him the distress of multiple IV cannulae".

9. Given the importance of the case, I decided to provide a full judgment that would be made public, albeit fully anonymised to protect SE's identity. Nevertheless, the order had been made on 19th August 2014. The treating clinicians met on the morning of 20th August to discuss the de-escalation of treatment for SE. It was agreed that he would be taken off his Bi-PAP breathing support that afternoon. I am told that he was quite agitated whilst still on the breathing support. The Mother asked for him to be baptised and this happened. In fact, it appears that the Mother and SA left before the baptism took place. I assume they found the situation too distressing.
10. SE's breathing support was then reduced. His foster carers, the Social Worker, her Team Manager and two nurses were with him. Within a few minutes, he stopped breathing. He was not agitated at all and just slipped away. He died at approximately 5.15 pm on the afternoon of 20^th August 2014.

The relevant history

11. The Mother was born in 1982. She is therefore 32 years of age. She has a chronic history of alcohol and drug misuse. She has worked as a street sex worker and has a disorganised lifestyle. Her previous child, RC, was adopted in 2009.
12. It appears that she continued to drink alcohol heavily and take heroin during her pregnancy with SE. SE was born prematurely at approximately 29 weeks gestation in April 2014 at Calderdale Hospital. He was addicted to heroin. As noted above, he had significant abnormalities to his heart, lungs, kidney and spine although the prognosis was initially more positive than it became. In May 2014, he was transferred to the Leeds General Infirmary Neonatal unit.
13. Care proceedings were instituted on 30^th May 2014. An interim care order was made on 13^th June 2014. The Mother was offered contact but did not take it up. Foster carers (VH and CH) were found, although SE had never been able to live with them. They have, however, been devoted to SE and have attended at the hospital daily for long periods of time.
14. SE underwent major heart surgery on 11th June 2014. On 27th June 2014, he was taken into intensive care and had to be ventilated for a couple of days. Thereafter, his breathing was supported by hi-flow oxygen.
15. Regrettably, there was a serious deterioration in his health on 15^th July 2014. He had to be treated with antibiotics and steroids. He had a blood transfusion. He was very unsettled. On 18^th July, he returned to intensive care having acquired an infection. He was ventilated again. The ventilator was removed on 24th July 2014 and he returned to having high flow breathing support. In early August, this was moved to BiPAP ventilation. He had to be given a steroid, dexamethasone and a large dose of sedative to keep him calm.
16. On 1^st August, Kirklees applied for a declaration as to whether or not life-prolonging medical treatment remained in his best interests. Kirklees considered the prognosis to be very poor. It was submitted that the artificial ventilation that was necessary to keep him alive was both painful and distressing. The medical advice was that it was not in SE's interests to be ventilated again should he suffer a further collapse.
17. There was a question as to whether or not the Mother had capacity to litigate. This was resolved by the report of a Dr Quinn on 5th August 2014 that confirmed that she did have capacity.
18. Statements had been obtained from both Dr Shore and Dr Chetcuti. At a directions hearing on 6^th August, I directed a further report from Dr Ward Platt. I listed the matter for final hearing on 19^th August.

The need for the application

19. First, I consider Kirklees was absolutely correct to make this application. I disagree with section 2.5 of the Royal College of Paediatrics and Child Health Guidelines "Withholding or withdrawing Life Sustaining Treatment in Children" (Second Edition; May 2004) which says:-

"If the local authority achieves a care order, it gains parental responsibility and the power to restrict the natural parents' authority or that of any other person who would normally carry such authority. Parents can appeal to the High Court and to the Court of Appeal."

20. I agree with counsel for Kirklees that it would be quite wrong for a Local Authority to follow this guidance, regardless of whether or not the Local Authority holds an interim care order or a final care order. If there is parental opposition, parental equivocation or doubt as to parental capacity to decide, an application must be made to the court. In such circumstances, a Guardian will then be appointed. I further take the view that, if there is an interim care order and therefore a Guardian already in place, the Guardian should always be involved before such a serious decision is taken. If the Guardian considers that an application should be made, the Local Authority or the NHS Trust must do so.

The law to be applied

21. SE's rights under Articles 2 (the right to life), 3 (prevention of inhuman or degrading treatment) and 8 (private and family life) of the European Convention on Human Rights and Fundamental Freedoms 1950 are engaged. He has the right to enjoyment of the best possible standards of health and to facilities for the treatment of illness and rehabilitation of his health. I must consider not only his medical condition but also his emotional, social and familial context. I must be particularly vigilant in determining and protecting his interests.
22. In Wyatt v Portsmouth Hospital NHS and another [2006] 1 FLR 554, the Court of Appeal referred to six "intellectual milestones" which must be met when deciding whether to sanction the withdrawal or withholding of treatment. These are:-

(a) To decide what is in the best interests of SE;

(b) In doing so, his welfare is my paramount consideration;

(c) To look at the matter from his assumed point of view;

(d) To start with the strong presumption in favour of the course of action that would prolong life but that presumption is not irrebuttable;

(e) To consider his medical, emotional and all other welfare issues when considering his best interests; and

(f) To conduct a balancing exercise in which all relevant factors are weighed.

23. Holman J carefully summarised the correct approach at Paragraph 16 of his judgment in NHS Trust v MB [2006] EWHC 507:-

(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 position 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 interests lies.

(vii) Considerable weight (Lord Donaldson of Lymington 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 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 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, ie 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 the 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."

24. I also accept that the key principles derived from the Supreme Court's decision in Aintree University Hospitals Foundation Trust v James [2013] UKSC 67; [2013] 3 WLR 1299 apply to cases concerning children who lack capacity just as they apply to an adult patient who lacks capacity. In particular:-

(a) The question is not whether it would be in the patient's best interests to withhold those treatments should they become necessary in order to sustain life. The correct and fundamental question is whether it is in the best interests of a patient, and therefore lawful, to give medical treatment. If the court concludes that the treatment is not in the child's best interests then it will not consent to the treatment.

(b) It sets the goal too high to say that treatment is futile unless it has a "real prospect of curing or at least palliating the life-threatening disease or illness from which the patient is suffering". The correct approach is to consider whether the proposed treatment would be futile in the sense of being ineffective or being of no benefit to the patient.

(c) It is also not appropriate to define "no prospect of recovery" to mean "no prospect of recovering such a state of good health as will avert the looming prospect of death if the life-sustaining is given". Baroness Hale said at Paragraph 44 that "where a patient is suffering from an incurable illness, disease or disability, it is not very helpful to talk of recovering a good state of health. The patient's life may still be very well worth living".

(d) The court must be cautious about making declarations in circumstances which were not fully predictable or were fluctuating.

(e) Baroness Hale rejected the suggestion that the test of the patient's wishes and feelings was an objective one, namely what the reasonable patient would think. The purpose of the best interests test is to consider matters from the patient's point of view. Insofar as it is possible to ascertain the patient's wishes and feelings, his beliefs and values or the things which were important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual.

25. It is clear from all the reported cases that the court should carefully analyse the child's quality of life and responsiveness to caregivers and sensory stimuli; the degree to which the treatment in question is invasive and distressing; whether or not there is a firm prognosis and the possibility of continuing treatment leading to some improvement (although not necessarily a return to health).
26. The Royal College of Paediatrics and Child Health Guidelines "Withholding or withdrawing Life Sustaining Treatment in Children", refer to two specific situations, namely the "no chance" situation and the "no purpose" situation.
27. The "no chance" situation is one where the child has "such severe disease that life-sustaining treatment simply delays death without significant alleviation of suffering". In such a situation where treatment delays death but neither improves life quality or potential, continued treatment is defined as being "futile and burdensome and not in the best interests of the patient".
28. The "no purpose" situation is one where, 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". It adds that, in such cases, "continuing treatment might leave the child in a worse condition than already exists with the likelihood of further deterioration leading to an impossibly poor life".
29. The guidance emphasises the principle that the duty of care of a medical patient is not to preserve life at all costs. There is no obligation to provide life sustaining treatment if the benefits of that treatment no longer outweigh the burden to the patient.
30. It appears that Theis J was led inadvertently into error in An NHS Foundation Trust v AB, CD and EF [2014] Fam Law 969 when she was referred to Royal College of Paediatrics and Child Health Guidelines (January 2014). Mr John Pettit of the Royal College confirmed to counsel for Kirklees by email that the document dated January 2014 was merely a draft. It was made available by the Royal College to its members for comments. Concerns were raised by its membership. The decision was taken to halt publication of the text until the concerns had been dealt with. A further consultation is now in progress. It follows that the May 2004 document remains the most recent published guidance.

The expert evidence

31. Dr Shore's first statement was dated 1^st August 2014. She said that SE was suffering from a degree of heart failure and very serious lung problems. He needed a procedure to repair what was in effect a hole in his heart. Unfortunately, his weight was too low to enable the operation to proceed but it was a vicious circle as the problem was impacting on his ability to gain weight. He was on the verge of requiring re-ventilation. The doctor considered that he should not be re-ventilated if he required it again. Equally, chest compressions should not be performed to re-start his heart. She considered that ongoing treatments would be painful and distressing and would merely prolong his death in circumstances where there was no chance of recovery. Indeed, even if treated, she considered there was a very high chance he would succumb at some point to a further respiratory infection. There was, therefore, no purpose to the treatment either.
32. Dr Chetcuti's statement is dated 5^th August 2014. If anything, SE's lung disease had got worse. Although he responded to very high doses of steroids, when the steroids were reduced, his lung problems became very much more apparent. He considered SE was upset and distressed both on and off the ventilator even with adequate sedation. The clinical situation was hopeless. The doctor agreed that SE should be managed palliatively. He considered it was not in SE's interests to be re-ventilated nor for him to receive cardio-respiratory resuscitation.
33. Dr Ward Platt reported on 14^th August 2014. He had met SE's foster carers who took the view SE had regressed in recent weeks. They had noted his increasing distress. On examination of SE, the doctor found a constellation of grave health problems. He considered the most serious to be neuro-developmental impairment. SE needed cardiac surgery but it was far from certain he would survive long enough to be able to have the surgery. He considered SE's chance of recovery was sufficiently low and the price of striving to keep him alive in terms of pain and distress was sufficiently high for it to be wrong to attempt to do so. Indeed, he thought it was perhaps cruel to subject him to such treatments. The doctor agreed that SE fell under the headings of both no chance and no purpose. Indeed, he felt there might also be an element of the unbearable situation. There were, he said, two alternatives. The first was to continue the status quo but with no re-ventilation or cardiopulmonary resuscitation. The second was an immediate palliative care pathway with the removal of his current respiratory support. He favoured the latter.
34. Dr Shore filed a second statement dated 16^th August. She indicated that SE's health had deteriorated further. On 13^th August, he had been moved back into the intensive care area of the neonatal unit. He had several episodes of respiratory failure. The team had managed to hold off ventilating him by optimising his BiPAP respiratory support. She repeated the request for the opportunity to withdraw further treatment to enable him to die in comfort and dignity. Her team felt SE endured suffering daily. The respiratory support irritated him and squashed his face. She considered his condition was getting worse and his suffering was increasing.
35. The Cafcass Guardian, Steven Anderson's analysis is dated 18^th August. He reported that the Mother had visited him a few times. She informed him over the telephone that she wanted him to be comfortable and did not want him to suffer any further pain. He did raise a couple of points which he considered needed further exploration with the doctors. The first was a wish to have a better understanding of the extent to which SE was in pain when being ventilated. The second was whether or not he had permanent neuro-development impairment or whether the effects of the treatment had caused temporary development delay that could be ameliorated in the future by good care and stimulation.
36. The oral evidence of all three doctors was absolutely clear as to both points. They had no doubt that SE was in pain when being ventilated, even when on the BiPAP respiratory system. Dr Shore referred to it as "a life spent in distress". She described him as "very agitated" with a "very poor quality of life". She said that he remained agitated "even between procedures" and needed to be in a darkened room. Dr Chetcuti said that the position was "unsustainable" as "he hates the machines". Dr Ward Platt told me that SE was "distressed all the way through my examination" and that it was "just a case of degree" with him displaying "a constant demeanour of distress".
37. Turning to the issue of future prognosis, Dr Ward Platt said that the outlook was "very dark indeed". There was a continuing pattern of deterioration, even from the time of his examination the previous week. He considered that the attacks requiring ventilation would come more frequently until he could not be resuscitated. If the status quo remained as it was, SE would undoubtedly require ventilation again within a short period along with large amounts of sedation. He would lose the ability to interact with those around him and there would be no exit strategy. It was a downward spiral. Even if one period of ventilation worked, this would only be a precursor to another subsequent collapse. It was only a case of how long it took before he died. The other doctors agreed.

My conclusions

38. Ms Lorraine Cavanagh for Kirklees produced a comprehensive table of benefits and burdens of the various treatment options. I considered the table carefully. I took full account of the written and oral evidence and the submissions made by the advocates.
39. On 19^th August, I came to the clear conclusion that I should make the declarations sought by Kirklees. Indeed, I would go as far as to say that the evidence supporting my doing so was, by then, overwhelming.
40. I entirely accept that all life is precious. I recognised the very strong presumption in favour of a course that will prolong life. I accepted that the individual human instinct and the desire to survive is strong. I assumed it was strong in SE. He had the support of his devoted foster carers. At times, he had settled periods. If I declined the declarations, he might live for a further period.
41. Regrettably, however, every other consideration pointed strongly the other way. It was clear that SE had no quality of life. There was virtually no pleasure, merely pain and suffering. The burdens of the continuing treatment were, for this little boy, huge. He was in significant and very regular distress.
42. It was quite clear that he should not be put through the unpleasant and painful procedure of further ventilation or chest compressions as and when they became necessary, as I was sure they would. There was no point in doing so. Any such treatment would merely prolong SE's death and, even if initially successful, would inevitably lead in due course to the need for further such treatment. Eventually, the treatment would not work and he would die, possibly in distress.
43. It was, by the conclusion of the oral evidence, equally clear that the appropriate way to proceed was to provide SE with palliative care only, provided the measures and treatments adopted were the most compatible with maintaining his comfort and dignity. I was very impressed by the careful way in which all three doctors approached the matter. SE has had the very best care but, sadly, it has not been possible to make progress. Regrettably, there has been significant deterioration in his health rather than improvement.
44. I accept the evidence of all three doctors. I had a clear and firm prognosis that further treatment would be futile and would in due course end in his death. I considered that, very unfortunately, this was a case where there was both "no chance" and "no purpose" in continuing treatment. So far as "no chance" was concerned, the treatment was merely delaying death. Not only was it not alleviating suffering, it was actually causing distress and pain to SE. The treatment was neither improving his life quality nor his potential. It was futile, burdensome and not in his best interests.
45. Turning to "no purpose", I was satisfied that, although continuing treatment might have prolonged his life for a short additional period, it was only a short further period. Moreover, the treatment itself was so painful and distressing that it was unreasonable to expect SE to bear it.
46. In coming to this decision, I reminded myself that the foster carers had noted SE's increasing distress in the period prior to the hearing. Moreover, the Mother did not want SE to suffer further. Although only a very young and ill baby, I particularly noted the evidence of Dr Chetcuti that SE himself "hated the machines" and Dr Shore that SE needed to be kept in a darkened room.
47. For SE, continued treatment was unbearable and pointless. He was suffering daily. It was "a life spent in distress". He was regularly very agitated, with a constant demeanour of distress. He had a very poor quality of life and would, I concluded, soon have come to the point where he had no breaks from the distress.
48. Although it always pains a court to have to make declarations such as those sought in this case, I was quite sure (and I remain equally sure) that it was correct to do so in the interests of SE. I am pleased that he slipped away without suffering further distress and that he was not agitated at the time. At the very least, he deserved to end his short life with comfort, dignity and no distress. Fortunately, this was achieved.
49. I wish to thank all the doctors, nurses and support staff at the hospital and SE's foster carers and the social workers at Kirklees for the enormous care and commitment they devoted to SE during his short life. They could have done no more.
50. I also thank all the advocates for the very great help they gave me in this undoubtedly difficult and distressing case.