Caring decisions: when doctors and parents disagree24 September 2018 | Health Sector
The recent UK matter of Alfie Evans has brought into focus every parent’s worst nightmare – the decision to turn off a child’s life support. We look at the reasoning behind the UK Court’s decision to allow doctors to withdraw life sustaining treatment and the approach taken by Australian Courts.
The case of Alfie Evans
Alfie Evans was born on 9 May 2016 in the UK. At around six months of age he began showing signs of significant developmental delay and was suffering seizures. He was admitted to Alder Hey Children's Hospital (the hospital) in Liverpool. Doctors were unable to definitively diagnose Alfie, but agreed that he suffered from a degenerative neurological condition.
While in hospital, Alfie’s condition deteriorated significantly while he continued to suffer seizures. His parents were told that even if it were possible to stop his seizures, which seemed unlikely, his cognition was entirely beyond recovery and it was unlikely he would be able to breathe without assistance.
Alfie remained in a coma for more than a year while his parents and the hospital disagreed about his treatment. Alfie’s parents then staged a large media campaign in 2017 to transfer Alfie to a specialist treatment facility in Italy, even gaining support from the Pope. But ultimately, the hospital refused on the basis that continuing Alfie’s life support was unfair and inhumane.
In late December 2017, the hospital sought a declaration from the High Court of Justice that “continued ventilatory support is not in Alfie's best interests and in the circumstances it is not lawful that such treatment continue".
In deciding whether to grant this declaration, the High Court was required to consider what was in Alfie’s best interests. Justice Hayden commented that although this is an easy test to outline, it is difficult to apply in sensitive circumstances such as Alfie’s. In considering what was in Alfie’s best interests, the Court considered welfare in the widest sense, including the nature of the treatment proposed, what it involves, the prospects of success and ultimate outcome of the treatment. The best interests of the child must prevail even where parents (with the best of intentions) hold a different view.
Having heard evidence from multiple medical experts, Justice Hayden concluded that the MRI scans confirmed that the cerebral thalami had entirely disappeared, leaving Alfie unable to hear, see, smell or respond to touch. He accepted the medical evidence that treatment for Alfie was futile and was satisfied that continued ventilator support was no longer in Alfie’s best interests. On 20 February 2018, Justice Hayden gave doctors permission to cease providing ventilation, commenting that what Alfie required was good quality palliative care.
Alfie’s parents appealed the decision, but on 6 March 2018 the Court of Appeal upheld Justice Hayden’s decision for doctors to stop providing ventilation. On 11 April 2018, Justice Hayden provided direction for an end of life care plan. Alfie’s life support was turned off on 23 April 2018, and he passed away five days later.
A further recent decision regarding a child’s best interests was made in Kings College Hospital NHS Foundation Trust v Thomas. The High Court was again asked to consider whether it was in a child’s best interests for life sustaining treatment to continue. In Thomas, the child suffered a catastrophic brain injury during birth with MRI scans revealing a loss of almost half of his brain. The Court considered that to allow life sustaining treatment to continue would result in an extremely limited quality of life. In the circumstances, the Court held that it was not in the child’s best interests that the treatment continue.
The Australian legal position
Australian Courts have the authority to act within parens patriae jurisdiction. The parens patriae doctrine allows Courts to step in and act in the shoes of the parent. Either a doctor or parent of a child can apply to the Supreme Court or Family Court for an order about the medical treatment of a child.
When considering whether to allow or prohibit life sustaining treatment for a minor, Australian courts take a similar approach to the UK. That is, the paramount consideration is what is in the best interests of the child.
An analogous situation to the UK cases occurred in Australia in 2012 with 9 month old baby Mohammed. Mohammed was diagnosed with a mitochondrial disorder, which doctors agreed was fatal. Mohammed’s doctors believed that he should be provided with palliative care. However, Mohammed’s parents disagreed, requesting that he receive all available treatment, including medical ventilation if he stopped breathing. The parents sought an order from the Supreme Court of New South Wales, compelling doctors to treat Mohammed by means of mechanical ventilation. Ultimately, the parents’ application was dismissed.
The leading authority in this area, Marion’s case, establishes that while the Court has inherent jurisdiction to act in the best interests of the child, this requires a careful consideration of all relevant factors, including:
- The particular condition of the child.
- The proposed nature of the treatment.
- The reasons why the treatment ought to be carried out.
- What alterative courses of treatment (if any) exist and their availability.
- The desirability and effect of authorising treatment.
- The potential physical effects on the child.
- The psychological and social implications.
Thankfully, cases requiring court intervention about the medical treatment of children is rare. However, the Alfie Evans’ case is a timely reminder that parents and doctors may sometimes disagree about the appropriateness of medical treatment provided to children. Doctors should reflect on their own views of the child’s best interests and seek legal advice if they feel that continuing treatment may not be in accordance with their beliefs.