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Re KH (A child) [2012] EWHC B18 (Fam)

Application by an NHS Trust for declarations in relation to the best interests of a severely disabled child and, in particular, as to his medical treatment in the event that his condition should deteriorate. Declaration granted as the nature of treatment which he might receive.

Citation Number: [2012] EWHC B18 (Fam)
Case No: FD11P02589
5th October 2012
B e f o r e :

An NHS Trust Applicant

Mrs H
(represented by her litigation friend, the Official Solicitor)
Mr H
(represented by his litigation friend, the Official Solicitor)

A Borough Council

(a child, represented by CAFCASS) 

Mr Conrad Hallin (instructed by Hill Dickinson) for the Trust
Mr Simon Heaney (instructed by Heaney Watson) for Mrs H,
Mr Damien Sanders (instructed by Berkson Globe) for Mr H
Ms Gail Owen (instructed by Knowsley Metropolitan Borough Council) for the Borough Council
CB in person
Mr Liam Carlen (instructed by Hogans) for KH
Hearing date: 24th September 2012
Judgment date 5th October 2012
Crown Copyright ©
See Order at bottom of Judgment

Mr Justice Peter Jackson:
1. This is an application by an NHS Trust for declarations in relation to the best interests of a boy known in the proceedings as KH. The Trust seeks approval of a medical treatment plan which comes before the court because there are some matters that are not agreed and because the treatment plan involves the withholding of life-sustaining treatment in the event of a serious deterioration in KH's condition.

2. KH will continue to receive medical and daily care of the very highest quality. There is no question of withdrawing treatment. What is contemplated is that treatment should not be escalated when his condition inevitably deteriorates, as this is not considered in his interests by his doctors, his carer, and (in most respects) by his parents.

3. I will set out the background, identify the issues, summarise the law and state my conclusion.

4. KH was born on 1 May 2009 and is now three years and five months old. His parents are Mr and Mrs H. They have difficulties of their own and lack capacity to make decisions about KH's medical treatment or to conduct the proceedings on their own behalf. They have been represented by the Official Solicitor.

5. After his birth KH was placed in foster care under an interim care order. The care proceedings continue, awaiting the outcome of this application, in which KH is represented by his Children's Guardian.

6. Since KH was born, his parents have had another child, who is also in the care of the local authority.

7. On 24 June 2009, when he was five weeks old, KH was admitted to hospital. He was very unwell and the cause was found to be a Herpes virus infection which caused viral encephalitis. This resulted in devastating and widespread brain destruction. As a consequence he has made no developmental progress and functions below the level of a new born baby. He is totally and permanently dependent on his carer. He has a number of major physical disabilities including severe dystonia (a condition whereby muscle contractions cause twisting and repetitive movements or abnormal postures), severe and progressive scoliosis (twisting of the spine) and deformity of the rib cage, gastric reflux and frequent vomiting, severe visual impairment, inability to communicate and a disturbed sleep cycle. He is fed through a jejunostomy tube.

8. KH remained in hospital for almost a year. Since April 2010 he has been placed with long-term foster carers, Mr and Mrs B, who have cared for him superbly in every way. Mrs B, who knows KH better than anyone, is rightly a party to the proceedings.

9. KH's parents take an interest in his welfare and have monthly supervised contact.

10. KH is under the care of a leading children's hospital. His consultant paediatric neurologist, Dr S, has prepared an Advanced Care Plan, which is reviewed in the clinic (currently quarterly), or when KH presents for treatment. He was recently admitted for reinstatement of his feeding buttons but, perhaps due in part to the quality of care he receives from Mr and Mrs B, he has generally been remarkably healthy.

11. KH's life expectancy is severely reduced by his condition, which will have a progressive deteriorating course. Dr S considers his life expectancy to be short, but it is possible that he may live for a number of years.

12. The overall purpose of the Plan is to continue to give KH the fullest treatment while he remains in his present state, and to treat minor medical issues as they arise, but not to give aggressive treatment if he were to deteriorate seriously, on the basis that it would be unkind and contrary to his best interests to do so.

13. The Plan in its current version reads as follows:

In view of the severity of the brain injury KH sustained as a result of the Herpes Simplex Encephalitis and his extreme level of dependency without any hope of any meaningful recovery, the following is proposed:

1. The aim of any treatment or interventions proposed for KH is to keep him comfortable and distress and pain free

2. If KH suffers from a potentially painful and distressing infection, such as otitis media or urinary tract infection, oral antibiotics and pain relief should be given.

Under such circumstances admission to hospital for blood sampling, insertion of intravenous lines and administration of intravenous antibiotics should be avoided in order to prevent further distress and pain, unless the respective infection does not resolve with oral antibiotics and admission to hospital for intravenous treatment is considered to be in KH's best interest.

3. Gastro oesophageal reflux is currently reasonably well controlled following the insertion of the feeding jejunostomy tube with KH's gastrostomy on free drainage and continuing anti reflux medication. He continues to thrive. A surgical procedure to prevent gastro oesophageal reflux should be avoided if at all possible and should only be considered if potential distress and pain caused by the gastro oesophageal reflux is felt to be more distressing than that of a surgical intervention.

4. If KH develop signs of a lower respiratory tract infection (pneumonia) he should receive broad spectrum oral antibiotics. Admission to hospital for blood sampling, insertion of intravenous access and intravenous antibiotics should be avoided. He should receive chest physiotherapy and suction to his upper airway to clear secretions.

5 If KH deteriorate further despite the above measures, he should be kept pain and distress free, using appropriate pain medication (such as Morphine) and / or sedation (such as Midazolam). It is acknowledged that KH might die in such a situation from the complications of a pneumonia. It is acknowledged that any of the above medications might reduce his respiratory drive and therefore shorten his life. However, any medications are given for the purpose of symptom relief only and not with the intention of shortening KH's life.

6 If it is not possible to achieve adequate symptom control in the home or if carers find it difficult to cope with potential End of Life Care at home despite support from the Palliative Care Team, the Community Nursing Team and the Paediatric Neurology Team, KH should be admitted to [the] Children's Hospital or to the local children's Hospice for symptom management and potential End of Life Care.

7 KH should not be intubated or receive invasive or non invasive ventilation.

8 In the case of severe respiratory compromise, KH should receive, if available, suction to his airway to help clear secretions, chest physiotherapy and face mask oxygen if these interventions improve his comfort. He should not receive mouth to mouth or bag and mask resuscitation.

9 If he suffers a cardiac arrest, KH should not receive any cardiac resuscitation including cardiac massage, resuscitation drugs or inotropes.

10 KH was referred to the Palliative Care Team led by Dr B on 9th August 2011. Following agreement regarding future appropriate interventions in case of deterioration, further liaison with the local Palliative Care Nursing Team will take place to ensure that there is a management plan in place for appropriate symptom control.

11 KH was referred to [the] Children's Hospice who have accepted the referral. Both potential residential care and / or support from the Home Care Team will be available in the future should this be required.

12 For the avoidance of any doubt, nothing in this Advanced Care Plan should in any way prevent those providing medical treatment to KH from acting in his best interests as they are perceived at any particular time.

The issues
14. The Plan is agreed between the Trust and by Mrs B and by Mr H and is not opposed by the Local Authority and the Children's Guardian. Mrs H agrees with the general approach of the Plan, but does not agree to three matters in relation to paragraphs 4, 8 and 9:

(4) She would wish KH to have a blood test if he got an infection, such as pneumonia, if it would help the doctors know what was wrong.
(8) If KH stopped breathing, she would like him to be given a short period of mouth to mouth resuscitation.
(9) If KH's heart stopped beating she would like two attempts to be made to restart it (as she put it, for him to be 'zapped' twice).

15. A further issue arises as to the Court's approach to making declarations in a case that is fortunately not an emergency and where approval of an Advanced Care Plan is sought.

16. The proceedings, which were heard within a day, were conducted amicably and with proper respect for the position of KH, who is a much-loved child.

The law
17. The court must ascertain what is in KH's best interests in a situation involving the withholding of life-sustaining treatment. On behalf of the Trust, Mr Hallin has produced a helpful statement of the law. Subject to the comments in my next paragraph, I adopt it

"The law concerning withdrawing or withholding life-sustaining treatment
1. Doctors are of course under a general duty to provide appropriate medical treatment, including life-sustaining treatment, to all patients under their care, including children.

2. It is accepted, however, that in certain situations, where it is in the best interests of a child, doctors can withhold or decline to initiate treatment, even where the inevitable result will be the death of the child (see, for example, the Court of Appeal decision in Re B (a minor) (wardship: medical treatment) [1981] 1 WLR 1421; NHS Trust v MB [2006] EWHC 507; ).

The 'Best Interests' test
3. The Court is tasked with considering whether the plan for KH's future medical treatment as described in the advanced care plan needs is in his best interests.

4. In so doing, the Court must weigh up the advantages and disadvantages of providing or withholding the various treatment options within that plan, and to balance them in order to determine where KH's best interests lie (Re J (a minor) (wardship: medical treatment) [1991] 2 WLR 140; 3 All ER 930; [1990] 2 Med LR 67).

5. NB withdrawal of treatment is not proposed in this application, although if this were in issue it would fall under the same test. There is no valid legal distinction between 'withholding' and 'withdrawing' life-sustaining treatment. The 'best interests' test applies to both situations (Airedale NHS Trust v Bland [1993] AC 789 at 866, 867 and 875).

6. When considering what is in KH's best interests, the Court must exercise independent and objective judgment on the basis of all the available evidence (Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 WLR 242).

7. The Court's approach to KH's best interests will necessarily be highly fact-specific and the courts have been slow to set definitive guidance on how to approach the 'best interests' test. For example, in NHS Trust v MB (supra) Holman J said at paragraphs 106-107: 'this is a very fact specific decision taken in the actual circumstances as they are for this child and today… My sole and intense focus has been this child alone'.

8. Nevertheless, in NHS Trust v MB Holman J provided a helpful summary of the principles in play when applying the 'best interests' test in infant treatment decisions as follows:

i) As a dispute has arisen between the treating doctors and the parents, and one, and now both, parties have asked the court to make a decision, it is the role and duty of the court to do so and to exercise its own independent and objective judgment.

ii) The right and power of the court to do so only arises because the patient, in this case because he is a child, lacks the capacity to make a decision for himself.

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

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

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

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

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

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

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

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

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

9. It is apparent from Holman J's observations at 8.v) above that medical best interests are not the only consideration. KH's wider best interests (albeit including his medical interests) are determinative (Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 and by analogy, Re MB (an adult: medical treatment) [1997] 8 Med 217 at 225 per Butler-Sloss LJ). The views of doctors, other members of a child's care team and his parents should be taken into account to the extent that they touch upon the child's best interest, rather than their own interests or opinions.

10. In this case, KH's parents have been found to lack litigation capacity and it is understood that they are to be represented by the Official Solicitor as next friend. In these circumstances it is submitted that to be consistent with the Mental Capacity Act 2005 as amended, and in particular section 4(6) of that Act, regard should be had to the parents' wishes and feelings, but only to the extent that these relate to KH's best interests, which are for the Court to assess objectively. As stated by Holman J at 8x) above, 'Their own wishes, however understandable in human terms, are wholly irrelevant to consideration of the objective best interests of the child save to the extent in any given case that they may illuminate the quality and value to the child of the child/parent relationship'. A fortiori, this caveat must apply more forcefully to the views or wishes of parents without capacity who are not themselves looking after the child in question. The Official Solicitor, acting as litigation friend for KH's parents, should of course seek to advance a position in the 'best interests' of KH's parents rather than KH himself. It is important to note, therefore, that whilst the Official Solicitor's views in this regard may well elide with the 'best interests' of KH, there is this distinction to be made. This contrasts with the Official Solicitor's usual role in Court of Protection proceedings, where he seeks to advance P's best interests (rather than those of other Respondents to such proceedings).

11. The ethics of withholding or withdrawing life support are set out in a publication by the Royal College of Paediatrics and Child Health (RCPCH), routinely used by practitioners and the Court (See for example An NHS Trust v X [2005] EWCA Civ 1145; [2006] Lloyd's Med Rep 29):

"Withholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice" (Second Edition) May 2004. This provides as follows… (at pages 28 and 29):

"3.1.3. Circumstances of withholding or withdrawal of treatment...
The "No Chance" Situation
. Treatment delays death but neither improves life's quality nor potential. Needlessly prolonging treatment in these circumstances is futile and burdensome and not in the best interests of the patient; hence there is no legal obligation for a doctor to provide it. Indeed, if this is done knowingly (futile treatment) it may constitute an assault or "inhuman and degrading treatment" under Article 3 of the European Convention on Human Rights. Consider for example a child with progressive metastatic malignant disease whose life would not benefit from chemotherapy or other forms of treatment aimed at cure.

The "No Purpose" Situation. In these circumstances the child may be able to survive with treatment, but there are reasons to believe that giving treatment may not be in the child's best interest. For example, the child may develop or already have such a degree of irreversible impairment that it would be unreasonable to expect them to bear it. 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". The child may not be capable now or in the future of taking part in decision making or other self directed activity.

In all the above circumstances it is appropriate to consider withholding or withdrawing treatment. If it is likely that future life will be "impossibly poor" then treatment might reasonably be withheld. If such a life already exists and there is likelihood of it continuing without foreseeable improvement, treatment might reasonably be withdrawn.

"The Unbearable Situation". This situation occurs when the child and/or family feel that further treatment is more than can be borne they may wish to have treatment withdrawn or to refuse further treatment irrespective of the medical opinion that it may be of some benefit."

12. Where a child's condition lies within this schema is inevitably a matter that falls within the treating clinician's competence. Consideration of the extent to which the child falls into these various criteria is not of itself determinative, but will clearly help to inform the Court's overall 'best interests' assessment.

13. The concept of 'intolerability' of the child's condition should not be invoked to usurp a comprehensive 'best interests' assessment. It is neither a supplementary test to the 'best interests' test, nor a gloss to that test (Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 at paragraph 24, endorsed by the Court of Appeal in Wyatt v Portsmouth Hospital NHS Trust [2005] EWCA Civ 1181 at paragraphs 76 and 91). Although 'intolerability' may obviously be a relevant factor, it cannot provide a single determinative test as to best interests (R (on the application of Burke) v GMC [2005] EWCA Civ 1003 at paragraphs 61 to 63; Re L (A Child) (Medical Treatment: Benefit) [2004] EWHC 2731 (Fam) NHS Trust v MB (supra) per Holman J at paragraph 17).

14. Finally, although the Mental Capacity Act 2005 (as amended) has no legal application with regard to the Court's inherent jurisdiction in this case, some guidance as to how best to approach the 'best interests' test can be derived from section 4 of that Act, which is set out below for convenience (although clearly not all of this section will be relevant in this case):

4 Best interests
(1) In determining for the purposes of this Act what is in a person's best interests, the person making the determination must not make it merely on the basis of—

(a) the person's age or appearance, or
(b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests.

(2) The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.
(3) He must consider—

(a) whether it is likely that the person will at some time have capacity in relation to the matter in question, and
(b) if it appears likely that he will, when that is likely to be.

(4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.

(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.

(6) He must consider, so far as is reasonably ascertainable—

(a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),
(b) the beliefs and values that would be likely to influence his decision if he had capacity, and
(c) the other factors that he would be likely to consider if he were able to do so.

(7) He must take into account, if it is practicable and appropriate to consult them, the views of—

(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,
(b) anyone engaged in caring for the person or interested in his welfare,
(c) any donee of a lasting power of attorney granted by the person, and
(d) any deputy appointed for the person by the court,

as to what would be in the person's best interests and, in particular, as to the matters mentioned in subsection (6).

(8) The duties imposed by subsections (1) to (7) also apply in relation to the exercise of any powers which—

(a) are exercisable under a lasting power of attorney, or
(b) are exercisable by a person under this Act where he reasonably believes that another person lacks capacity.

(9) In the case of an act done, or a decision made, by a person other than the court, there is sufficient compliance with this section if (having complied with the requirements of subsections (1) to (7)) he reasonably believes that what he does or decides is in the best interests of the person concerned.

(10)"Life-sustaining treatment" means treatment which in the view of a person providing health care for the person concerned is necessary to sustain life.

(11) "Relevant circumstances" are those—

(a) of which the person making the determination is aware, and
(b) which it would be reasonable to regard as relevant."

15. To this summary, Mr Carlen, on behalf of KH's Guardian adds that KH's right to life [Art. 2 of the European Convention on Human Rights] should be articulated.

16. My only other comment relates to the statement in paragraph 10 of Mr Hallin's summary that: 'A fortiori, this caveat [i.e. the irrelevance of the wishes of others, save to the extent that they cast light on objective best interests] must apply more forcefully to the views or wishes of parents without capacity who are not themselves looking after the child in question. I readily accept that an involved and capacitous parent may be better placed to express views that assist in assessing best interests than one who is less involved or capacitous, but that is a matter of evidence and not one of principle. Parents who lack capacity may still make telling points about welfare and it would be wrong to discount the weight to be attached to their views simply because of incapacity. It is the validity of the views that matter, not the capacity of the person that holds them. In the present case, I have not discounted the views of the mother on the ground that she is represented by a litigation friend (the Official Solicitor) who does not oppose the declarations sought by the Trust, but have tried to approach her views on their merits.

Advanced Care Plans
17. Advanced Care Plans are commonly used to secure the best treatment for children with severe and potentially life-threatening or life-limiting conditions. They are the product of several painstaking meetings with parents, carers and medical staff, discussing the purpose, benefits and disadvantages of each aspect of the treatment. This usually leads to agreement about the circumstances in which care should or should not be escalated.

18. Dr S, whose evidence was in every way impressive and who enjoys the respect of Mrs B and of the parents, described the way in which plans are reviewed at each clinic and distributed to all who might come across a child in a medical context. In KH's case, the plan is routinely copied to the Medical Director, the surgeons, the community paediatrician, the palliative care nurse, social services, and an array of therapists. Steps are now being taken to ensure that the ambulance service receives such plans so that paramedics are aware of a child's special situation.

19. According to Dr S, it is essential that the plan is seen as a holistic programme for the patient, rather than as a series of fixed problems. The regular review process is integral to keeping the plan current and appropriate.

20. I am sure that the work that goes into creating these plans protects patients from inappropriate treatment delivered in an emergency on the basis of expediency. I consider their relationship with legal declarations below.

The Advanced Care Plan for KH
21. KH's case, with its legal complications relating to the incapacity of the parents and the sharing of parental responsibility with the Local Authority, was seen as a case for an Advanced Care Plan, but full agreement could not be reached.

22. The broad principle underlying the plan is agreed by all to be in KH's best interests. Taking the fullest account of the strong presumption in favour of life-preserving treatment, KH's situation if his health severely deteriorated would be impossibly poor. Assessing his best interest in their widest sense, he is even now in an extremely reduced state.

23. Dr S's statement describes KH's condition in detail.

24. Virtually all parts of the hemispheres of KH's large brain have been destroyed. As a result, he cannot communicate and does not have any functional vision. The parts of his brain which deal with higher cognitive functions including behaviour, social awareness, learning, danger awareness, emotions and knowledge of what is right and wrong are virtually entirely missing. The areas of the brain dealing with language, smell, visual memory are almost entirely destroyed (save for a very small proportion of the right temporal lobe). He cannot voluntarily move. His brainstem is intact and appears essentially normal on MRI, preserving the most basic vital functions. His cerebellum ('small brain') is also essentially preserved, which would ordinarily be used to coordinate movement and balance, as well as arousal to a wakeful state. These are the most basic of brain functions.

25. KH's physical conditions are extreme and deteriorating. In particular, his acute scoliosis is getting progressively worse; his spine is becoming increasingly stiff and is bent and rotated so that his rib cage on the left is almost touching his pelvis and on the right protrudes. His pelvis is tilted and together with the left sided dislocation of his hip has led to abnormal posturing.

26. It is not known whether KH can experience pain because he cannot communicate. Whilst it is highly likely that all his pain responses are reflex driven and he has no cognitive awareness of pain, this cannot be said with certainty. He might have some kind of rudimentary awareness of pain, discomfort and distress. If he does, his physical condition is such that he would be experiencing increasing levels of pain and discomfort with the development of scoliosis and dystonia. He is becoming increasingly uncomfortable in the sitting position and can now barely tolerate a car seat. He shows distress by crying, through his facial expression and with increasingly abnormal posturing.

27. As with pain, it is not known for certain whether he is capable of experiencing pleasure or comfort. Dr S notes that he can settle in Mrs B's arms and Mrs B believes that he can follow her visually and that he smiles from time to time, although it is impossible to know whether this is a meaningful act or a reflex. It is probable that KH does not have the sensory input that would allow for any significant pleasurable experience of life.

28. Dr S considers that we have to assume that KH experiences pain and pleasure at some level, which causes concern about his experience of deteriorating health.

29. The chances of any meaningful neurological recovery or development are essentially non-existent.

30. In such circumstances, treatment in the event of the inevitable deterioration that KH will experience may prolong life, but it will neither improve KH's quality of life or potential, and depending upon the extent of deterioration, may be futile.

31. It is also clear from Dr S's evidence that if KH were to reach the point of requiring ventilation or CPR, his overall condition would have deteriorated so markedly from its present state that he would be likely to be facing a life of pain (if he can experience it) with no possibility of pleasure in the face of such serious deterioration.

32. My clear conclusion, in agreement with all who know KH, is that aggressive treatment in such circumstances would amount to preserving life for its own sake and that this would be not be in KH's best interests.

33. I turn to the issues raised by Mrs H, KH's mother. She has expressed her view to me at a 'hearing within a hearing' at which only her representatives and the Guardian and her representatives were present. She said that she just wants the best for KH. She does not want more pain for him. She said that she is worried at the thought that by her decisions she might have killed her son.

34. Mrs H sincerely wants to do the right thing for KH and everyone has reassured her that she should feel no personal responsibility for the decisions that are to be taken.

35. In relation to KH having a blood test if he gets an infection, such as pneumonia, Dr S was not in favour of the admission to hospital that this would require. An important goal is to allow KH to remain at home with Mr and Mrs B, where he is best cared for, to the extent possible. In relation to mouth to mouth resuscitation, Dr S considered that KH's condition would have deteriorated to such an extent that it would not be right to start resuscitation if he had stopped breathing. If KH suffered cardiac arrest, this would probably be the result of interruption in his breathing and would mean that he was in a terrible predicament from which it would not be possible to restore him, even to his pre-collapse state. Intervention to attempt to reverse the situation would only prolong his suffering.

36. I accept Dr S's advice about each of these scenarios. Mrs H is acutely and understandably anxious to do everything rightly possible for KH, but I find that the medical view is to be preferred. Everything possible would be done to make KH comfortable, but it is not in his interests to do more than Dr S advises. Any lack of clarity puts KH at risk of forms of treatment by medical staff who do not know him (for example paramedics or unfamiliar hospital staff) and who might inadvertently cause him distress and discomfort for no purpose.

37. I shall accordingly make declarations as to KH's best interests in relation to medical treatment. These will by agreement include reference to the fact that Mrs B will be consulted as if she held parental responsibility for him.

The scope of the declarations
38. The Trust has rightly brought the matter before the Court. The parents did not fully agree the Advanced Care Plan. Neither the Local Authority nor the Guardian could agree to a plan that involves the withholding of life-sustaining treatment.

39. It is also right that the matter has been brought before the Court at this time, when KH appears relatively well, rather than as an urgent application at the time of deterioration. It has enabled the issues to be investigated in a way that is impossible in a crisis. It has averted the risk that the doctors would feel obliged to ventilate KH while awaiting a decision, which might then involve consideration of the withdrawal of life support.

40. The trade-off for these advantages is that the medical situation has not crystallised, as it would by definition have done in a crisis. Accordingly, the range of issues is the greater and the timescale may be indefinite.

41. The Trust has invited the Court to declare that it is lawful and in KH's best interests "To have medical treatment withheld in the circumstances as described in the attached Advanced Care Plan". There are in my view difficulties with this apparently sensible request. These were noted by Wall LJ, giving the judgment of the Court of Appeal in Wyatt v Portsmouth Hospital NHS Trust [2005] EWCA Civ 1181 at paragraphs 117 and 188 (emphasis added):

117. We would, however, as a matter of practice, counsel caution in making declarations involving seriously damaged or gravely ill children which are open-ended. In the same way that this court said in R (Burke) v GMC that it is not the function of the court to be used as a general advice centre (see paragraph 21 of this court's judgment), it is, in our view, not the function of the court to oversee the treatment plan for a gravely ill child. That function is for the doctors in consultation with the child's parents. Judges take decisions on the basis of particular factual sub-strata. The court's function is to make a particular decision on a particular issue.

118. As a general proposition, therefore, we have reservations about judges making open-ended declarations which they may have to re-visit if circumstances change. But all that said, we came to the clear conclusion that Hedley J had indeed thought through the implications of what he was doing, and was entitled both to make and renew the declarations.

42. From this, it can be seen that declarations should only extend to matters where the factual basis is known. This makes it unwise to endorse aspects of plans that may change in their details, as the plan in this case may. The plan also contains provisions for which legal endorsement is unnecessary, or which are matters of detail.

43. The approach that I take is to identify the treatment issues that need to be determined and that are not likely to change over time. In KH's case, these are clear. Had there been a major issue over which there was uncertainty, it would not have been possible to resolve it in theory ahead of it crystallising in reality. Fortunately for KH, that does not arise in this case. His condition is well understood, the scope for improvement is almost nil, and the prospect and manner of deterioration is sadly inevitable.

44. In the circumstances, it is appropriate for the Court to make the following declarations:

It is lawful and in KH's best interests
A In the case of severe respiratory compromise, not to receive mouth-to-mouth or bag and mask resuscitation, endotracheal intubation, or invasive or non-invasive ventilation.

B In the event of cardiac arrest, not to receive cardiac resuscitation, including defibrillation, cardiac massage or resuscitation drugs including inotropes.

C In the event of serious infection, including pneumonia, 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.

D In the event of deterioration in his gastro-oesophageal reflux, not to undergo a definite surgical procedure unless it is considered that such surgery would help to make him more comfortable and/or distress and pain free.

E In the event of deterioration of his medical condition, to receive pain medication (such as Morphine) and/or sedation (such as Midazolam) with the purpose of relieving suffering and distress, even though such medications might reduce his respiratory drive and thereby shorten his life.

The above declarations do not prevent those providing medical treatment to KH from giving any medical treatment that they considered to be in his best interests at any particular time.

Any medical consultation about KH's best interests shall include consultation with CB, his carer, as if she held parental responsibility for him.

The parties shall have liberty to apply.



(1) MRS H
(2) MR H
(4) CB
(5) KH
(a child represented by CAFCASS as his Guardian ad litem)

Before Mr Justice Peter Jackson on 24th September 2012 and … October 2012

UPON hearing counsel for the Applicant and the Second Respondent, solicitors for the First Respondent and CAFCASS, and the Fourth Respondent in person.

reading the documents and statements in the court bundle

hearing the oral evidence of Dr S and Mrs H

1. These proceedings are in public.
2. For the purposes of these proceedings:-

a) the Applicant shall be referred to as "An NHS Trust";
b) the First Respondent shall be referred to as "Mr H";
c) the Second Respondent shall be referred to as "Mrs H";
d) the Third Respondent shall be referred to as "A Borough Council";
e) the Fourth Respondent shall be known as "CB";
f) and the Fifth Respondent shall be known as "KH".

3. There shall be no report of this matter which identifies KH whether by name, or by naming members of his family, giving his or their location or naming or giving the names or location of the clinicians, healthcare professionals (including Dr S) and/or the establishments which are or will be responsible for his care or treatment.

4. By reason of his minority and by widespread destruction of the cerebral hemispheres of his brain, KH lacks capacity (and will always lack capacity) to consent to or refuse medical treatment.

5. It is lawful and in KH's best interests:

A In the case of severe respiratory compromise, not to receive mouth-to-mouth or bag and mask resuscitation, endotracheal intubation, or invasive or non-invasive ventilation.

B In the event of cardiac arrest, not to receive cardiac resuscitation, including defibrillation, cardiac massage or resuscitation drugs including inotropes.

C In the event of serious infection, including pneumonia, 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.

D In the event of deterioration in his gastro-oesophageal reflux, not to undergo a definite surgical procedure unless it is considered that such surgery would help to make him more comfortable and/or distress and pain free.

E In the event of deterioration of his medical condition, to receive pain medication (such as Morphine) and/or sedation (such as Midazolam) with the purpose of relieving suffering and distress, even though such medications might reduce his respiratory drive and thereby shorten his life.
The above declarations do not prevent those providing medical treatment to KH from giving any medical treatment that they considered to be in his best interests at any particular time.

Any medical consultation about KH's best interests shall include consultation with CB, his carer, as if she held parental responsibility for him.

6. The parties shall have liberty to apply.

7. There be no order for costs save for detailed assessment of any legally aided parties' costs.