(Family Division, Baker J, 8 February 2016)
Medical treatment - Withdrawal and withholding of treatment - Profoundly unwell young child - Whether declarations of lawfulness should be grantedThe local health board was granted declarations permitting the withdrawal and withholding of treatment in respect of the profoundly unwell young child.
Neutral Citation Number:  EWHC 206 (Fam)
Case No: FD16P00040
IN THE HIGH COURT OF JUSTICE
IN THE MATTER OF THE SENIOR COURTS ACT 1981
AND IN THE MATTER OF Y (WITHHOLDING OF MEDICAL TREATMENT)
Royal Courts of Justice
THE HONOURABLE MR. JUSTICE BAKER
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A LOCAL HEALTH BOARD
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Y (by his children’s guardian) (1)
Y’s FATHER (2)
Y’s MOTHER (3)
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David Lawson (instructed by Shared Service Partnership) for the Applicant
Matthew Rees (instructed by Cafcass Cymru) for the First Respondent by his children’s guardian
Vikram Sachdeva QC (instructed by Irwin Mitchell) for the Second and Third Respondents
Hearing dates: 29th January 2016
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The Honourable Mr Justice Baker
These proceedings concern an application by a Health Board for a declaration in respect of medical treatment to be given to a baby, hereafter referred to as “Y”, who is a patient in the Applicant’s hospital. At an urgent telephone hearing on 29th January 2016, I made an order by consent granting the declaration. This judgment sets out the reasons for my decision.Summary of Facts
Y was born prematurely on 25th July 2015, at 28 weeks gestation. Following his birth, he suffered two episodes of infection, one of which developed into meningitis, and possibly ventriculitis, resulting in extensive brain damage and microcephaly. He remained in hospital until 15th December 2015 at which point he was discharged, but readmitted on 5th January suffering from a lower respiratory tract infection. There were also concerns that he was aspirating his feed secondary to gastro-oesophageal reflux. His condition deteriorated and he was intubated to provide further respiratory support. During the period of intubation, he suffered a period of no or low cardiac output lasting thirty minutes, during which he underwent prolonged cardiopulmonary resuscitation. It is estimated that, during the period of thirty minutes, he would have probably received about three thousand chest compressions.
Y was transferred to an intensive care unit where he was taken off the ventilator. Initially his condition stabilised but in the early hours of 13th January his health deteriorated again with a decrease in heart rate and abnormal breathing pattern. His parents were keen that he should receive as much support as possible and a further intubation and ventilation procedure was carried out. This proved particularly difficult and as a result Y suffered a number of complications which necessitated various intrusive procedures including the administration of inotropic drugs to perfuse his lungs so as to facilitate the oxygenation of his blood. He was unable to tolerate any movement and required heavy sedation to achieve physiological stability. Further episodes of cardiac arrest or malfunction followed requiring CPR on several occasions. It was felt that these episodes were due to deficiencies in the cardiac centre in the brain stem. The doctors became concerned that these episodes were likely to recur and that there was no treatment to reverse the effects of the brain damage. They concluded that it was in his best interests not to subject him to repeated episodes of CPR but his parents disagreed, urging them to continue with this treatment.
As a result of the disagreement, on 20th January 2016 the Health Board filed this application under the inherent jurisdiction. The matter came before me for an urgent preliminary hearing at which I gave certain directions, including
(1) joining Y as a party;
(2) inviting CAFCASS Legal to appoint a guardian for the child;
(3) permitting the Applicant to apply for a reporting restriction order, and further ordering that no information disclosed to any news organisation in the course of service of any such application should be disclosed to any person outside that news organisation without the court’s permission;
(4) giving the parents permission to instruct an expert to advise as to Y’s medical condition and whether it was in his best interests to receive CPR and further escalation of medical treatment (with appropriate directions in accordance with Part 25 of the Family Procedure Rules, including as to costs);
(5) giving directions for the filing of further evidence;
(6) listing the application for a hearing before Bodey J on 1st February, and
(7) giving the parties liberty to apply at short notice to me at any point prior to the hearing on 1st February.
The parents duly obtained a comprehensive report from an independent expert, Professor Vloeberghs, consultant paediatric neurosurgeon at Nottingham University Hospital, who endorsed the trust’s treatment proposals. After careful consideration, the parents and the Health Board were able to reach agreement regarding Y’s treatment plan. The child’s guardian appointed by CAFCASS Legal also supported the application. Having reached agreement as to the treatment plan, the parties wished it to be implemented without delay. They therefore asked me to convene an urgent telephone hearing on the afternoon of 29th January, at which, having considered the evidence, I made an order incorporating the declarations sought by the Applicant.
I am grateful to Mr Vikram Sachdeva QC, leading counsel instructed on behalf of the parents, who has prepared a note on the legal principles which has been agreed by counsel for the other parties.
The common law and the Children Act 1989 assign to parents the responsibility for the care and protection of their children. Parental responsibility includes the power to consent to medical treatment on behalf of the child. If there is no consent, the High Court, in the exercise of its inherent jurisdiction invoked by persons with an interest in the child, including those responsible for his medical treatment, can make such orders as it thinks fit in the best interests of the child. It is also possible for the High Court to make a specific issue order in relation to disputed medical treatment under section 8 of the 1989 Act.
The principles to be applied by the court when exercising its powers under the inherent jurisdiction in respect of the withholding or withdrawal of medical treatment from children were first articulated by the Court of Appeal in Re J (A Minor) (Wardship: Medical Treatment)
 Fam 33. In which Lord Donaldson MR stated:
“There is without doubt a very strong presumption in favour of a course of action which will prolong life, but…it is not irrebuttable …. [A]ccount has to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account also has to be taken of the pain and suffering involved in the proposed treatment itself…but in the end there will be cases in which the answer must be that it is not in the best interests of the child to subject it to treatment which will cause increased suffering and produce no commensurate benefits, giving the fullest possible weight to the child’s, and mankind’s, desire to survive.”
Subsequently, in Wyatt v Portsmouth NHS Trust
 EWCA Civ 1181, Wall LJ, giving the judgment of the Court of Appeal, stated (in paragraph 87):
“In our judgment, the intellectual milestones for the judge in a case such as the present are, therefore, simple, although the ultimate decision will frequently be extremely difficult. The judge must decide what is in the child’s best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the patient…there is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable. The term ‘best interests’ encompasses medical, emotional, and all other welfare issues. The court must conduct a balancing exercise in which all the relevant factors are weighed…and a helpful way of undertaking this exercise is to draw up a balance sheet….”
Alongside cases under the inherent jurisdiction involving medical treatment of children, the High Court has developed a jurisdiction authorising the withholding or withdrawal of medical treatment or nutrition and hydration in cases involving adult patients with incapacity. This jurisdiction, which was described by the House of Lords in Re F
 2 AC 1, was identified as part of the inherent jurisdiction of the High Court. Analogous principles are found in the Mental Capacity Act 2005, which was recently considered by the Supreme Court in Aintree University Hospitals NHS Foundation Trust v James
 UKSC 67. The decision and judgment of the Court delivered by Baroness Hale of Richmond in the latter case are relevant to the present case, and in particular her observations at paragraph 39:
“The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what is involved and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or was likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.”
At paragraph 43 Baroness Hale stressed: “The purpose of the best interest test is to consider matters from the patient’s point of view.”
Y’s Current Condition
An MRI scan carried out in October 2015 demonstrated that Y has tragically suffered very extensive parenchymal damage, especially on the right, and now has a small atrophic cerebellum. As a result, he is microcephalic with a head circumference significantly below the 0.4th centile. His pupils are fixed. He has low truncal and limb tone. The paediatric neurologists at the treating hospital concluded that he will have severe quadriplegic cerebral palsy with motor deficiencies in all four limbs, severe visual impairment and severe cognitive impairment. He has experienced many episodes of bradycardia and cardiac arrest, attributable to brain stem dysfunction. His condition is said to be irreversible. His weight is below the 0.4th centile, attributable in part to the episodes of reflux which in turn are caused by his neurological condition.
The paediatric intensive care consultant responsible for his treatment expresses this view:
“My clinical and nursing colleagues in PICU and I have become increasingly concerned as to whether maintaining an approach of frequent chest compression, resuscitation and escalation of treatment remains in Y’s best interests. It is a very difficult decision but our view is that this little boy is very sadly approaching the end of his natural life and that it is no longer in his best interests to provide him with chest compressions and escalation of treatment.”
The medical team therefore recommends that Y should continue to receive naso-gastric feeds and antibiotics as required for infection, and to be kept comfortable, but there should be no further CPR, nor should the intensive care support be increased from its current level. Thus he would receive no high frequency oscillatory ventilation, nor further inotropic medication or cardiac support, nor would a new central line or intraosseous needle be inserted, both of which procedures are regarded as invasive. The clinicians advise that there should be a further attempt at extubation. Not to take such a course would impose him to physiological imbalance from overventilation, and to the likelihood of lung tissue injury which in turn would further increase the risk of infection. It is the clinicians’ view, however, that if, after extubation, he is unable to support his own respiration, he should not thereafter be re-intubated.
In his report, Professor Vloeberghs analysed and summarised the history of Y’s medical treatment. He examined the October MRI images and confirmed that there is extensive bilateral brain damage, extending into the cerebellum and upper brain stem. Y has reflex movements upon stimulation, which Professor Vloeberghs describes as stereotypical and resulting from significant brain damage leading to autonomy of the brain stem and spinal cord, but no other discernible responses. He thought it unlikely that there was any significant processing of tactile or other environmental information. Professor Vloeberghs advises that, if children in this condition survive, they require full time intensive attention and support. Such long-term disability can be managed, albeit with great effort. Professor Vloeberghs emphasises, however, that his outlook and disability should be disconnected from his current clinical condition. In other words, he stresses – rightly – that the application to withdraw and/or withhold treatment relates to issues beyond Y’s likely profound cerebral palsy. As to his current clinical condition, Professor Vloeberghs agrees with the treating doctors that leaving Y intubated is not realistic. He also agrees that there is a significant risk that extubation will fail and that Y will not be able to breathe unassisted and may suffer a further cardiac arrest. In all the circumstances, Professor Vloeberghs agrees with the treatment plan – in other words the doctors should not provide further CPR or intensive care support, in particular no high frequency oscillatory ventilation or inotropes, nor should further attempts be made to insert a central line or intraosseous needle.
The Parents’ View
The predicament in which Y’s parents find themselves is one which all parents dread. This court has profound sympathy for them and admiration for all that they have done for Y. They have fought hard to ensure that every possible treatment is made available for their son. It is clear from Professor Vloeberghs’ conversations with them that they feel that relations with medical staff at the treating hospital have not been as good as might have been hoped. They are, of course, extremely distressed about their son’s condition. Professor Vloeberghs found, however, that they are fully aware of the extent of his health problems.
Prior to the start of these proceedings, the parents had opposed the recommendation of the clinical team as to Y’s future treatment. However, following discussions with Professor Vloeberghs, and receipt of his report, and further discussions with their own legal representatives, they have indicated that they now agree to the treatment plan and to the draft order prepared on behalf of the Applicant, on the basis that there would be a review of Y’s care and treatment plan after a maximum of 7 days and that, in the event that the central line became blocked or otherwise needed to be removed for clinical reasons, the parents’ solicitors would be informed as soon as possible.
I recognise how extraordinarily difficult it must have been for Y’s parents to come to this decision. Manifestly they have at all times been motivated by their wish to do whatever they can to save their son whom they plainly love so much.
Discussion and Conclusion
In her first statement, the paediatric intensive care consultant responsible for Y’s care sets out the advantages and disadvantages of the treatment options. By continuing attempts at resuscitation, including CPR and inotropic medication, and the refitting of the central line, the clinicians would be keeping open the remote possibility that Y may in due course survive without ventilation. Entirely understandably, this has been the parents’ hope. The doctors, however, do not regard it as realistic. The doctors identify a number of disadvantages if the present treatment is continued. If Y’s heart were to restart after cardiac arrest, he will be put through the suffering of the initial deterioration leading to the arrest, the resuscitation, and the prospect of further suffering when it occurs again, all to no clinical purpose. The PICU doctors and nurses regard it as unethical to undertake cardiac resuscitation and intensive care escalation in these circumstances, maintaining that this course would not respect Y’s right for a dignified life, for as long as he survives, and for a dignified death when it comes. The consultant believes that this course would surrender the child to an unknown period of suffering which has the potential to be prolonged.
If, on the other hand, the doctors adopt the treatment plan proposed by the Applicant, the child will suffer to some extent in the short term as a result of his underlying condition, but will not be put through the cycle of suffering resulting from further deterioration, then resuscitation, to be followed by further episodes of suffering, for what the doctors regard as no clinical purpose. The doctors stress that they are not proposing the complete withdrawal of intensive care, but only the further escalation of that care. They contend that this course would allow Y a dignified life so long as he remains alive, and will not oblige him to endure further distressing compressions or other intrusive treatment if and when he suffers a further cardiac arrest.
In my judgment, this assessment fully accords with the analysis required by the decision of the Supreme Court in the Aintree
case. It addresses Y’s welfare in the widest sense. It properly evaluates the various medical treatments which might be given, what they involve and their prospects of success, and the likely outcome for Y. Putting myself in Y’s position, and considering matters from his point of view, I conclude that, were he able to express his own wishes and feelings, he would accept that the course of treatment proposed by the clinicians is in his best interests.
I have given careful consideration to the attitudes of the parents as expressed in the past few weeks, which I consider to have been entirely understandable. I also note their ultimate decision to support the plan proposed by the clinicians.
In all the circumstances, therefore, I conclude that the course proposed by the clinicians is in Y’s best interests. In accordance with the parties’ ultimate agreement, I therefore conclude that
(1) It is lawful and will be in Y’s best interests for him to be extubated at the point where the clinicians, following discussion with Y’s family, consider that his condition is optimal for extubation, and that “optimal” for these purposes is likely to mean when,
(a) he remains on minimal ventilation:
(b) he has a body temperature of less than 37.5 and
(c) that he has not required CPR for the previous 12 hours;
(2) Upon extubation, it is lawful and in his best interests not to re-intubate him if he is unable to support his own respiration.
(3) Upon extubation, it is lawful and in his best interests not to receive CPR (save for stimulation, which may be provided) or ventilation or inotropes.
I therefore declare that the Applicant’s treatment plan, incorporating the withholding and withdrawal of treatment as described above, is lawful as being in Y’s best interests.
In conclusion, I would like to express again my deep sympathy to the parents for all that they have suffered, and my admiration for their devotion for Y and their determination to do everything they can for him. In the time remaining, I hope that they will be able to spend time with their son in peace.