The Hon MacDonald J recently provided his judgment on the very sad case of a 11-month-old boy, Isaiah Haastrup, admitted to the paediatric intensive care ward of King's College Hospital (1). The High Court of Justice, Family Division (England) (the Court) was asked to determine whether it was in Isaiah's best interests for his life sustaining treatment to continue, where discontinuance of the treatment would lead to Isaiah's death. Ultimately, the court held that it was not in the child's best interests for the treatment to be continued.
Facts
King's College Hospital NHS Foundation Trust (the Trust) applied to the court for a declaration that the provision of life sustaining treatment is no longer in Isaiah's best interests. The parents opposed the application. This was in part due to their religious denomination (Pentecostal Christian) on the basis it is not their right to say who should live and who should die.
Isaiah was born on 18 February 2017 by emergency caesarean section at the Trust further to the rupturing of the mother's uterus. He sustained a catastrophic brain injury with microcephaly due to hypoxic insult during labour and delivery. Prior to this application, allegations have been made by the parents that the standard of treatment around the time of the birth was negligent.
Approximately 5 weeks after Isaiah was born, when the parents were considering withdrawal of life sustaining treatment, Isaiah appeared to become more responsive. It was at that point felt by the parents that the low levels of consciousness of the child were not only due to his brain injury but were because of the medication he was being administered by the Trust.
Several doctors (from five different hospitals, including two independent experts) examined Isaiah and all agreed it is not in his best interests to continue mechanical ventilation and intensive care. To put the severity of his brain injury in context, one doctor said, having undertaken a study at Bristol of a cohort of 200 children who suffered hypoxic injury at birth, Isaiah's MRI scans were worse than any child he had seen, showing a loss of almost half his brain. There was a consensus amongst the medical team that there was no evidence to suggest the child could see, hear, interpret or have interaction with the outside world in any way that gave him pleasure. It was also agreed the degree of damage to his brain was so severe that he would not make any substantial improvement in his condition.
It was considered whether the child could feel pleasure or pain. The medical evidence agreed that even if Isaiah was aware, he had an extremely low level of conscious awareness, no higher function and only partially intact brain stem function. He had a profound disorder of development. There was no objective evidence that he felt pain or experienced pleasure and with respect to subjective evidence of pain or pleasure, there was only some, for example, he could appear more relaxed when bathed. The doctors confirmed that these responses did not necessarily equate to consciousness. Very sadly, while the mother contended that Isaiah had an emotional connection to her and responded positively, no such connection had been witnessed by medical staff. If Isaiah did have sufficient conscious awareness to feel pain, the medical team agreed that he suffered from a condition called dystonia that would result in him being in constant pain, which he would be unable to express and which could only partially be relieved. The Children's Guardian agreed with the medical team that it was not in Isaiah's best interests to prolong the current treatment situation.(2)
Decision
This judgment makes clear that the sheer level of disability experienced by Isaiah and an extremely poor prognosis means that, were he to continue to receive life sustaining treatment, this would only be possible by him remaining in hospital for the duration of his life - his parents were requesting him to be taken home. The court was tasked with considering what the child's attitude would be to treatment as well as taking account of the strong presumption in favour of taking all steps to preserve life. The fact that the child was born to loving and devoted parents who are willing to care as much as necessary for that child was also of significance in considering the child's best interests, as were the views of the parents.
It is quite clear from the judgment the presumption that life should be preserved is not irrebuttable. The fact that to continue life-sustaining treatment would not result in recovery and would condemn the child to a life of extremely limited quality was determinative. Further, the child's best interests must be considered from a medical, emotional, sensory and instinctive perspective.
The law in the United Kingdom
In such cases, the paramount consideration lies in what is in the "best interests of the child" (3) The starting point is to consider the matter from the assumed point of view of the child, that is, what the child's attitude to treatment is or is likely to be. There is a strong presumption in favour of taking all steps to preserve life, but it is not irrebuttable. In this case, the court was not concerned with whether the child would recover fully, rather, it questioned whether the child would have a life that was "worthwhile".
In dealing with cases concerning the medical treatment of children, the legal framework that the court must apply has been well settled - specifically, that the utmost paramount consideration is the best interest of the child. Therefore, the role of the court when exercising its jurisdiction is to essentially override the parents' duty by giving or withholding consent that is deemed to be in the child's best interest. The "best interests" test is a balancing regime whereby the courts must do its best to balance all the conflicting considerations in any case (4) Importantly, the court is not bound to follow the clinical assessment of the doctors but is obliged to form its own view as to the child's best interest. Undoubtedly, the views and opinions of both the doctors and parents must be considered, however, the court must be mindful that the views of the parents may understandably be coloured by emotion. (5)
In reaching their decision, the court considered the view set out by Holman J as cited in An NHS Foundation Trust v AB6 that:
The views and opinions of both the doctors and the parents must be carefully considered ... Their own wishes ... are wholly irrelevant to consideration of the objective best interests of the child save to the extent ... that they may illuminate the quality and value to the child of the child/ parent relationship (7).
In Re A (A Child) (8) the Court of Appeal confirmed that the task of the court in such cases should be as set out in the speech of Baroness Hale DPSC in Aintree University Hospitals NHS Foundation Trust v James. (9) Specifically, the focus is on whether it is in the patient's best interest to receive the treatment, rather than whether it is in his best interests to withhold or withdraw it. In corning to this decision, the child's welfare must be deliberated in the "widest sense" that is, by considering the nature of the medical treatment proposed, the likely prospects of success and the potential outcomes of the treatment for the patient (10)
In the most recent case decision of Yates and Gard v Great Ormond Street Hospital for Children NHS Foundation Trust (11) (Yates) the court repeated that:
... the sole principle is that the best interests of the child must prevail and that must apply even to cases where parents, for the best of motives, hold on to some alternative view (12).
The court in Yates concluded that, even if the child's life was going to be completely pain-free, there was still no measurable benefit for the child's life to continue; rather it is simply "inhumane" to permit it (13) A common connection between disputes concerning the treatment of children is that parents hold an alternative view to that of the clinicians. Therefore, it is common for lawyers who act on behalf of parents to seek to establish bespoke subcategories to which a different test to that of the best interests might apply.
In Re J (a minor) (14) counsel submitted that the withholding of lifesaving treatment should only be where the continuation of life ought to be "intolerable" for the child and bound to be one full of "pain and suffering". However, this proposition was rejected, the court recognised in Re B (a minor) (15) that account must be taken of the pain and suffering and the quality of life which the child will experience if life is prolonged. Additionally, the pain and suffering involved in the prospective treatment must also be accounted for. Notably, in situations where a parent puts forth an alternative option for treatment to that of medical experts, the High Court only has the jurisdiction to interfere with the parent's choice of medical treatment if there is a prospect that the child will suffer "significant harm" (16) However, in situations where there is no prospect of the child suffering significant harm, the parent's view will prevail (17)
The Australian perspective
Similarly, Australia's stance on determining whether to continue life-sustaining treatment is a decision determined only by analysis of what is in the best interests of the child (18) The term "best interests" is a nebulous term used freely in both legal and ethical contexts concerning both patients and their families. Pursuant to s 67ZC of the Family Law Act 1975 (Cth), a court has the discretion to make orders relating to the welfare of children, whereby in handing down such orders the best interests of the child is of paramount consideration.
This concept of best interests emerged in the case of Dept of Health and Community Services (NT) v JWB and SMB (Marion's case) (19) (Marion's case) whereby Brennan J acknowledged the difficulty in determining what is in the best interests of the child. Brennan J noted that the best interests approach is useful only to the extent that the first and paramount consideration is the interests of the child, and not the interests of others. Notably, it is within the discretion of both parents and medical staff to determine together what is in the best interest of the child, accounting for both the advantages and disadvantages of undergoing treatment and of non-treatment (benefit verses burden), the quality of life and the significant purpose of the treatment. It is not always the case that the parents and the medical staff can agree as to what is in the best interests of the child (20).
In Director Clinical Services, Child & Adolescent Health Services and Kiszko, (21) the Family Court had to determine whether continuing treatment of chemotherapy and radiotherapy was in the child's best interests. The medical staff and the parents had opposing views. The child had a rare brain tumour, which despite undertaking an operation to remove the tumour in its entirety, resulted in severe side effects on the child, deeply troubling his parents. The parents formed the view that the proposed treatment was not in the child's best interest given his weight, the chronic pain of the mother and the history of cancer within the family. In addition to this, a report from a paediatric oncologist, Professor Kellie, recommended additional chemotherapy but ultimately accepted that the parents' wishes on radiotherapy be respected. The expert also reported that "on the balance of probabilities, it is less than likely to save [the child's] life, but is virtually guaranteed to be associated with iatrogenic long term severe adverse health outcomes" (22).
Observing the expert report in conjunction with the parent's views, the court accepted that its task was to weigh up the competing factors and that the child's best interests was the overriding consideration. The likelihood that a course of action would cause serious distress and disruption within a family is also a factor that will bear upon the welfare of the child and thus ought to be of weight with the court. Therefore, finding the right balance in making decisions about the treatment of life-threatening illnesses is even more acute and agonising when the life is that of a child.
In reaching its decision, the court held that the "quality of life should be prioritised over its duration" (23). The judge concluded that the welfare of the child was not to be regarded solely in a physical or medical context, although those will undoubtedly be important. Rather, a child's welfare is to be considered along with their parents, whereby the state should not interfere unless there is "clear justification" for doing so (24). The court concluded that the prospects of a long-term cure was the consideration that weighed most heavily in this case and thus despite the resilient views of the doctors, ruled in favour of the parents (25) This decision was based on the significantly high risk of the severe consequences on the child's quality of life had he undergone the treatment outlined by Professor Kellie.
Parens patriae
In Australia, when dealing with such cases concerning the decision of whether to maintain life-sustaining treatment, the doctrine of "parens patriae" applies. This doctrine enables the Supreme Court in each state/ territory to protect the interests of persons who are not legally competent to look after their own interests. Essentially, this means that the court is put into a position by reasons of the prerogative of the Crown to act as the supreme parent of the child and must exercise their power in a manner which a "wise, affectionate and careful parent would act for the welfare of the child" (26)
In the case of X v Sydney Children's Hospitals Network (21) the NSW Court of Appeal had to determine whether a Supreme Court judge erred in his order to authorise treatment against the wishes and consent of a male who was 17 years and 8 months of age. In reaching their decision, the court applied the principal judgment of the Canadian Supreme Court held in AC v Manitoba (Director of Child and Family Services) (28) which held that even in cases concerning mature minors, the child is still subject to the courts' inherent parens patriae juris diction.
This parens patriae jurisdiction gives considerable latitude to courts to take into account the views of children and their parents prior to making any decisions that are in the child's best interests. In Marion's case, (29) Mason CJ, Dawson, Toohey and Gaudron JJ noted that whilst the crown has an inherent jurisdiction to do what is for the benefit of the child, they must carefully consider:
Whilst considering these factors, the court places substantial significance on the nature and degree of any risk to the child and the views, if any, expressed by the guardians of the child.
Ultimately, after careful analysis of the application of the law in both the United Kingdom and Australia, the best interests of the child is the determinative test applied in both jurisdictions when determining whether a child should undergo life-sustaining treatments. Similarities of the law arise in relation to the factors that ought to be considered when determining what is and what is not in the best interest of the child. Concurrently, the courts place significant emphasis on the quality of life the minor will experience if treatment is to be continued or endured. A clear similarity in both jurisdictions is that the best interests of the child in all cases is of paramount consideration and will not be overridden by opposing views of parents or other relatives or medical staff. In cases concerning life-sustaining treatment of children, it is vital that, where the opinions of doctors and parents differ substantially, an independent medical opinion is obtained. However, if the independent medical report does not help to achieve a mutual decision and understanding between the parents and clinicians, then the last resort is for the matter to be referred to the Supreme Court in its parens patriae jurisdiction to decide.
This article first appeared in the Australian Health Law Bulletin April 2018.
Footnotes
