How the Court navigates life or death decisions: reflections on recent parens patriae medical treatment cases

Cases involving authorisation of medical treatment are some of the most profound and challenging to come before the Court. Cases of this kind are comparatively rare. In most contexts, questions of authority to consent to medical treatment are navigated through general principles of parental authority; generally applicable legislative frameworks for substituted decision making; or otherwise in specialist tribunals established for the task. Those that come before the Court are often the hardest of hard cases – matters of life and death, often decided urgently before duty judges. Cases of this kind are harrowing and dreadful to read, particularly those that involve the medical treatment of a child.

Two recent cases before the Supreme Court of New South Wales provide insight into the process of the Court in exercising its parens patriae jurisdiction. The ancient parens patriae jurisdiction exists to protect those who cannot protect themselves.

Both cases involved a child diagnosed with cancer. Each child had good prospects of recovery with recommended treatment yet, for vastly different reasons, the commencement or continuation of their treatment was in issue. In each case, the opinion of the treating medical practitioner was that without treatment the child would die. In each case, the Court authorised the treatment in the best interests of the child.

The decisions echo several previous decisions where the Court has determined that ‘where faced with the stark reality that that the child will die if life-saving treatment is not performed which has a good prospect of a long-term cure, it is beyond doubt that it is in the child’s best interests to receive that treatment.’^[1]

H v AC

H v AC^[2] concerned a 17 year old girl, referred to pseudonymously as ‘AC’. By all accounts, AC was intelligent, confident and mature. She was completing a compressed year 11 and 12 HSC program, was an avid reader and was described as a ‘born leader’. AC regularly attended church with her parents, and was part of a social youth group. Prior to July 2023, AC was in good health.

In July 2023, AC was diagnosed with a bone cancer. She underwent several cycles of treatment, which were physically and psychologically intensive. AC and her family and friends prayed that AC would be cured of her cancer.

In September 2023, AC underwent a further scan which did not readily detect cancer due to a significant decrease in the size of the tumour following treatment. AC’s doctor explained that scans can only detect cancer of a certain size, so the absence of cancer on the scan did not mean that the cancer was gone. In his opinion, the cancer was not cured and AC required further treatment.

AC believed that the scan showing no clear sign of cancer was proof that her prayers had been answered and that she no longer had cancer. AC was due to recommence treatment in early October 2023. AC informed her treating doctor that she had decided not to proceed with further treatment, and AC’s parents supported her in this decision.

AC’s treating doctors considered that without completing the recommended treatment, the cancer would almost certainly lead to AC’s death. There was no evidence to suggest that AC wanted to die. Rather, she genuinely believed that she had been completely cured of cancer, such that there was no trace of cancer remaining in her body. AC indicated in her affidavit that ‘if I saw on the scans that the cancer had grown back, I’d most likely start treatment again.’

The hospital brought the case before the Court, seeking to determine whether AC had legal capacity to refuse the recommended treatment.

In the case of a minor, consent to medical treatment is governed by the principle in Marion’s Case.^[3] Marion’s Case determined that parental power to consent to medical treatment on behalf of a child diminishes gradually as the child’s capacities and maturity grows. A minor is considered capable of giving consent to medical treatment when he or she achieves a sufficient understanding and intelligence to enable him or her to understand fully what is proposed (a concept known as ‘Gillick competence’).

The submissions and evidence before the Court demonstrated AC's intelligence and maturity, leading the Court to determine that AC had the ability to make decisions about her medical care. In this regard, AC was considered to be ‘Gillick competent’.

Importantly, in bringing the case before the Court, the hospital was only seeking a declaration about AC’s capacity to refuse consent to medical treatment to avoid doubt about the issue. In effect, the case before the Court was framed on the basis that a determination that AC was competent to make treatment decisions would be the end the matter.

However, that determination was not the end of this matter. While no party had sought an order authorising the treatment in the event that AC was found to have decision making capacity, Justice Meek observed once the parens patriae jurisdiction is invoked, the Court is not necessarily bound by framing the issue as to whether the young person has capacity or not. Accordingly, notwithstanding his Honour’s determination that AC had capacity to make decisions about her medical care, Justice Meek determined that it was in AC’s best interests to continue treatment. His Honor therefore authorised and directed that the recommended treatment be administered to AC.

AC’s case demonstrates the tremendous reach of the parens patriae jurisdiction. It is important to keep in mind that that if these events had occurred a mere 12 months later than they did, AC would have been 18 years old and her refusal of treatment would never have been in issue.

H v OL

H v OL^[4] concerned a 14-year old girl referred to pseudonymously as ‘OL’. OL was living with significant disabilities including a gene mutation causing drug-resistant epilepsy and encephalopathy; severe developmental delay; and Autism Spectrum Disorder resulting in limited communication and behavioural difficulties. OL was said to have a developmental age of 18 months to 3 years.

In March 2024, OL was diagnosed with a leukemia. A treatment regime was proposed which would undoubtably have been intensely distressing for OL and those involved in her care. OL’s parents expressed a preference that there be no treatment for the leukemia, instead preferring that OL receive palliative care and be allowed to die peacefully at home.

The hospital requested that the Court exercise its parens patriae jurisdiction to enable the recommended treatment to be provided to OL. Without the proposed treatment, OL’s life expectancy was said to be 2 to 4 weeks. With the proposed treatment, OL was expected to have a 90% chance of achieving ‘survival’. OL’s mother expressed great concern about OL’s ability to bear any escalation of therapy due to the severity of OL’s existing medical conditions. Many of the procedures involved in her cancer treatment would require general anaesthetic and may even require physical restraints.

The facts of the case are intensely distressing and the gravity of the matter before Court cannot be understated. Unlike H v AC, there was no question whatsoever about capacity. Rather, having invoked the parens patriae jurisdiction, the question before the Court was simply a question of what is in the best interests of the child.

Acting Justice Elkaim considered previous cases in the parens patriae jurisdiction including Re Ryder^[5] (Ryder), a case also involving parents declining further cancer treatment. Justice Kunc in Ryder observed ‘In exercising the jurisdiction to control or ignore the parental right the court must act cautiously, not as if it were a private person acting with regard to his own child, and acting in opposition to the parent only when judicially satisfied that the welfare of the child requires that the parental right be suspended or superseded.’

Acting Justice Elkaim acknowledged that in Ryder, the child did not have other health issues. His Honour noted that, nevertheless, OL has lived with her complex health needs her whole life and, but for her cancer, would continue to live. His Honour reasoned ‘while successful treatment will bring her back to her previous life, with all its complications, that is a situation that would have existed in any event.’

Ultimately, Acting Justice Elkaim’s assessment of the case was stark. His Honour concluded that ‘not making the orders is effectively a death sentence. No medical opinion doubted that she [OL] would die within about four weeks.’ The treatment was authorised.

_{[1] Minister for Health v AS [2004] WASC 286.}

_{[2] [2024] NSWSC 40.}

_{[3] Secretary, Department of Health & Community Services v JWB & SMB (Marion's Case) [1992] HCA 15; 175 CLR 218.}

_{[4] [2024] NSWSC 271.}

_{[5] [2020] NSWSC 895.}