Should courts allow minors (<18 years) to refuse life-saving medical treatment for religious reasons?
My students don’t all agree that respect for the personal autonomy of a minor who fully understands the consequences of their decision, is all that matters. But many of them do.
There is also that extra heft that comes from an articulate teenager framing their treatment choices in religious terms.
Fortunately, Australian courts have resisted the temptation to abandon minors to their personal autonomy.
The decision of Justice Meek in H v AC [2024] NSWSC 40 is a fascinating, sensitively written and, in my view, deeply responsible example of the Supreme Court exercising its parens patriae jurisdiction to over-ride the decision of a 17-year-old “young woman of faith” (“AC”) who had refused further treatment for Ewing sarcoma, believing that God had healed her.
Meek J authorised the resumption of AC’s cancer treatment on 2 February 2024, about four months after it had been interrupted.
The decision illustrates the importance of the Supreme Court’s parens patriae jurisdiction in “doing what is necessary for the benefit and protection of [the] child” [55].
It also illustrates that the exercise of this jurisdiction is not limited by the choices of a mature or “Gillick competent” minor.
In discussing the scope of the parens patriae jurisdiction, His Honour emphasised its protective nature and accepted that it involves considering the advantages and disadvantages of the recommended medical treatment.
However, “the Court is not balancing the interests of the individual against broader public or governmental interests, but is balancing fundamental principles which are in tension in their application to an individual” [54].
In H v AC, weighty considerations in the exercise of the jurisdiction included the sanctity of AC’s life, the medical evidence, “AC’s religious beliefs, AC’s autonomy of decision-making, and her right to bodily integrity” [232(1)].
This post reviews H v AC, seeks to place it in context and highlights key arguments made by the parties.
“Mature” minors
In Marion’s case, a majority of Australia’s High Court accepted that parental power to consent to medical treatment on behalf of a child diminishes gradually as the child’s understanding, intelligence and maturity develops. In taking this position, the majority adopted the approach taken by the House of Lords in Gillick v West Norfolk and Wisbech Area Health Authority.
A parent’s power to consent not only diminishes as the child matures, but also excludes any authority to make treatment decisions for minors about certain special medical procedures, including “non-therapeutic sterilisations”. According to the majority Justices in Marion’s case, such decisions fall outside of parental responsibility and require a court’s authorisation.
On the other hand, provided they have capacity, “mature minors” (also known as Gillick competent minors) can presumptively make their own medical treatment decisions.
But does this extend to refusing life-saving blood transfusions or cancer treatments?
Proceeding on the basis that a teenager is a “mature minor” – capable of exercising decision-making capacity in relation to the rejection of life-preserving treatment – is fraught with risk.
Not surprisingly, hospitals treating gravely ill minors who reject recommended life-saving treatment have sought guidance from the courts.
At the bottom of this post there are some links to NSW and Victorian cases involving minors who were Jehovah’s Witnesses and had refused consent to blood transfusions.
Facts of H v AC
“AC” was first diagnosed with Ewing sarcoma, an aggressive bone cancer, when she was 16 years old.
She was offered the standard treatment for children with this disease, which included 17 fortnightly cycles of treatment involving five chemotherapy drugs [96]-[100].
Provided these treatments were completed, AC had around a 50% chance of a permanent cure [133],[219].
AC’s treatment began in August 2023. However, in October, before the fifth cycle of chemotherapy, and prior to recommended radiotherapy scheduled for November, AC declined further treatment [104].
An MRI scan taken in September had shown a “spectacular decrease in the size of the Ewing sarcoma tumour in the pelvis”, and “the lung nodules were no longer visible” [109].
AC’s treating pediatric oncologist, Dr A – described by Meek J as “among the most impressive professional witnesses that I have encountered in legal practice” [27] – did not believe that AC had been cured after four cycles of chemotherapy [110].
Dr A believed that the MRI scan did show abnormal tissue containing persisting cancer [11].
Persisting microscopic cancer, below the threshold of detectable size for MRI, would also be present – and would “absolutely, definitively” grow again without further treatment [112],[114].
Despite this, in early October 2023, AC informed Dr A that she believed that God had answered her prayer for a miracle, and that she no longer had cancer [118],[122-123].
AC’s parents were also devout Christians who intended to support AC in whatever decision she made [15],[162].
In Dr A’s opinion, if treatment were discontinued after four cycles, there was a 100% likelihood of progression, with tumour regrowth “likely resistant to further treatment”, creating an incurable disease from which AC would die [119].
A PET scan taken around 7 December 2023 showed “no areas of abnormal uptake” [132]. However, this merely reflected the fact that the cancer deposits were too small to show up in the PET scan, rather than the absence of all cancer [132].
Dr A reiterated her view to AC and her family that if treatment were stopped, “relapse of the cancer was inevitable, it would be difficult to treat and AC would probably not survive” [135].
She encouraged AC to “reconsider her decision over the Christmas period and to speak with her Church pastor” [135].
In Dr A’s view, AC’s decision to refuse further cancer treatment was “one of the most catastrophically bad decisions I’ve ever seen” [158].
On 22 December 2023, Dr A gave evidence that AC still had a 50% chance of a permanent cure, but a 100% chance of death without treatment [219]-[226].
AC’s religious faith
Meek J’s judgment included an extensive and sympathetic account of AC’s religious beliefs and her faith in God (see paras [74]-[92]).
AC believed she had a personal relationship with Jesus, she believed in the power of prayer, she believed in miracles performed by God, and in eternal life with God following death [217]. Meek J described these believes as “entirely conventional within the Christian faith” [90].
However, “to accord a religious belief weight is not to treat it as determinative” [92].
Orders sought by the hospital
On 22 December 2023, in order to clarify its legal position, the hospital where AC was receiving treatment (“H”) sought a declaration that AC had capacity to refuse the treatment that had been recommended: pelvic surgery and radiotherapy, whole lung radiation, and chemotherapy [5],[13],[32-33].
If the Court found that AC had capacity to refuse this treatment, no order was sought authorising the hospital to provide it [38].
On the other hand, if AC lacked capacity, the hospital sought a declaration that it could lawfully carry out its recommended treatments on AC [14].
The hospital sought to invoke the Supreme Court’s parens patriae jurisdiction because, although NSW legislation authorised medical treatment of children and young persons in an emergency, the hospital wanted to re-commence AC’s treatment promptly – before an emergency arose as a result of her refusal [31].
Meek J pointed out that in exercising its parens patriae jurisdiction, the Court was not “bound by the framing of an issue as to whether AC has capacity or not, as if a finding on that would be determinative of the outcome of the case. The jurisdiction is a broader one than that” [39].
Decision in H v AC
In the end, His Honour accepted that AC did have the ability to make a decision refusing the treatment recommended to her “and in that sense is to be regarded as being ‘Gillick competent’” [228].
Nevertheless, he authorised and directed that the recommended cancer treatment be provided to AC [231].
His Honour’s approach is consistent with earlier litigation in The Sydney Children’s Hospital Network v X, in which the trial Judge, Gzell J, accepted that it may be appropriate to “suborn an informed decision of a minor if the circumstances demand such a course” (para [40]).
In X, the Court of Appeal confirmed that whether or not a minor is Gillick competent does not restrict the breadth of the Court’s parens patriae jurisdiction (paras [45]-[46]).
Did AC have the capacity to refuse life-saving cancer treatment?
The expert psychologists who prepared reports in this case (Dr C, and Mr D, see below), and counsels’ submissions raised a number of interesting arguments relating to whether AC had decision-making capacity to refuse further cancer treatment.
Ultimately, it was unnecessary for Meek J to rule specifically on these arguments although His Honour accepted that AC was “Gillick competent”.
The “wisdom” of AC’s decision, and relevance of her belief that a miracle had occurred
Despite the orders it had sought, the hospital was concerned that AC might, in reality, lack the capacity to refuse consent to the cancer treatment that had been recommended [170].
The hospital based its submissions partly on a report from a clinical and forensic psychologist (Dr C), which concluded that in light of her religious belief that she had been cured, AC “cannot appropriately weigh the risks and benefits of treatment as against non-treatment” [171].
Another clinical psychologist, engaged by AC’s parents, (Mr D), agreed with Dr C on this point [183].
Both experts agreed that although AC had “no cognitive deficiencies or impediments to her decision-making” [193], AC discounted the weight of the medical evidence given to her precisely because of her belief that she was “the recipient of a miracle” [181].
In Dr C’s view, although AC wanted “to return to her normal life and avoid the complications treatment will bring, especially infertility” [181], it was the intensity of her religious belief that ultimately drove her decision [211].
This line of reasoning doesn’t necessarily mean that every teenager who refuses life-saving medical treatment for religious reasons will, for that reason, lack capacity. But it comes close.
A teenager who is a Jehovah’s Witness, for example, might have a realistic assessment of their prognosis and the medical consequences of their refusal that is unaffected by any belief about miracles, yet still reject treatment on the basis that it is morally unacceptable.
As it was, Ms Shea (appearing for AC) argued that Dr C had impermissibly confused AC’s capacity to weigh the advantages and disadvantages of further treatment for herself, with the wisdom of AC’s decision to refuse further treatment.
In her view, the wisdom of the decision AC had made was irrelevant to a finding that AC was “Gillick competent” or had capacity to make decisions about recommended medical treatments [176].
H v AC supports this view, given the circumstances in which His Honour found AC to be Gillick competent.
Neurobiological differences as a basis for determining competence
Mr D, the psychologist whose report was relied upon by AC’s parents, pointed to the neurobiological changes that occur in a child’s brain as it develops. In his view, it is these neurobiological differences that justify any differences in the way that society treats adolescents and adults [194].
Mr D pointed out that “AC is currently in the middle to later stage of neuro cortical development, where developmental changes can take place. As things stand, AC has approximately six more years before her brain is fully developed” [194].
Even so, he accepted that AC’s religious beliefs were unlikely to change [194].
In Mr D’s view, AC had “sufficient understanding and intelligence to enable her to understand fully what is proposed in the medical treatment recommended by Dr A, why he has recommended it, and to weigh the advantages and disadvantages of the recommended treatment” [195].
As a result, Mr D concluded that AC was competent to make the decision to stop further cancer treatment [196].
Similarly, AC’s counsel, Ms Shea, argued that in this case the “principles of welfare and autonomy do effectively merge” [201].
Meek J relied on the evidence of the two psychologists (Dr C and Mr D) principally as a record of their conversations with AC. There was no need for him to make determinations about their understanding of “Gillick competence” [184].
As noted above, however, His Honour did conclude that AC had “the ability to make decisions, including the ability to make a decision regarding refusal of the recommended treatment or continuation of the treatment” [197], “and in that sense is to be regarded as being ‘Gillick competent’” [228].
However, this was not an impediment to the Court declaring, in its parens patriae jurisdiction, that the hospital staff were authorised to re-commence AC’s cancer treatment [240].
Reasoning of Justice Meek supporting the final orders
Meek J accepted the medical evidence that “cancer subsists in AC’s body” [180].
Based on witness’ evidence, His Honour described the impacts of the treatment to date on AC, including loss of hair, and noted that the completion of chemotherapy would include “lengthy periods of hospitalisation for AC” [145].
“There will be multiple absences from home, school, friends, and in this case, from AC’s church community” [153]. AC might also suffer significant further side effects from the chemotherapy [148].
Hitherto, AC had tolerated the chemotherapy reasonably well: “she tolerated the terribleness ‘better than many’”, in the words of Dr A [232(3)-(4)].
Although significant, the burdens of treatment were temporary, and Dr A expected AC to make full recovery after treatment ended [232(7)].
Nevertheless, there would be lasting physical impacts, including a weakened pelvis on the left-side, and “some risk of infertility” [232(8)]. To counter this, the hospital had cryopreserved some of AC’s ovarian tissue [232(8)].
Meek J was aware that re-imposing treatment by court order would mean forcing a young woman to have treatment “against her will in a context in which she had a genuine belief that it was not necessary” [156].
His Honour noted that AC had discussed with Dr C how she would feel if her cancer returned, and that AC had said “it would be disappointing, as it is not what she expects, but it would not change her faith in God and belief that miracles can occur” [216].
Evidently, the strong faith that was a central component of AC’s identity was likely to withstand both the progression of disease, and whatever orders the Court made.
While it was the totality of factors that supported the court’s decision to order the resumption of treatment, Meek J highlighted the sanctity of AC’s life, her religious beliefs and personal autonomy, and her right to bodily integrity [232(1)].
See [240] for the final orders made by Meek J.
Consistency of beliefs; proximity to the age of majority
One further issue worth noting from the submissions was the argument by Mr Clifton (representing AC’s parents) that “AC’s core belief system is firmly established and unlikely to change, and will remain well into adulthood” [206] and that as a result, AC’s decision to refuse treatment should stand.
In ordering the further treatment of AC, Meek J impliedly rejected this submission. In the X case, Gzell J also authorised the use of blood products despite the fact that the applicant, a 17-year-old minor, would almost certainly refuse such treatment in 10 months’ time, on reaching adulthood: see [48]-[49] in that case.
On appeal, Beazley P commented that the fact that the applicant was now only four months from his eighteenth birthday “may lessen the Court’s imperative in protecting his welfare by giving precedence to potentially saving his life over his personal wishes”: see [7].
In saying this, Her Honour appeared to give credit to the argument that a minor’s proximity to the age of majority means that greater weight should be given to their decision, irrespective of its objective “wisdom”.
While such arguments may have a superficial appeal, they have always struck me as unusual. The law necessarily draws lines. The age of majority is 18 years, not 17 years. The medical treatment choices of a competent adult will be respected, even if they include refusing life-preserving treatment: see Hunter and New England Area Health Service v A, [10],[17],[36].
Neither the likely consistency of a teenager’s religious beliefs (prior to and after reaching 18 years), nor their proximity to the age of majority seem relevant to any objective assessment – through the parens patriae jurisdiction – of “what is necessary for the benefit and protection” of the minor [55].
Blood transfusion cases
The right of a minor to refuse life-saving treatments has been tested in the well-known context of Jehovah’s Witness’ teenagers refusing blood products and transfusions in cases including The Sydney Children’s Hospital Network v X; on appeal: X v Sydney Children’s Hospitals Network, and in earlier decisions such as Royal Alexandra Hospital v Joseph.
Cases involving parents of younger children include Sydney Children’s Hospital Network, The Application of.
In a Victorian case, Mercy Hospitals Victoria Ltd v D1,the court authorised the plaintiff to administer blood products to a 17-year old Jehovah’s Witness who was 38-weeks pregnant.
Although the young woman had said that “she wanted to make Jehovah happy” and that “if she was to die she would have a new life in paradise” [34], Macaulay J said that:
“I am not convinced she has based her choice on a maturely formed and entrenched religious conviction. Put another way, I am not convinced that overriding her expressed choice would so rob her of her essential self as to outweigh the loss she would suffer through losing her life or sustaining a catastrophic injury” [76].
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