The ‘Ancient and Rich History’ of the Court’s Parens Patriae Jurisdiction

A review of the recent decisions in H v AC [2024] NSWSC 40 and H v OL [2024] NSWSC 271

I recently posted on LinkedIn a summary of a Court decision which had applied the ‘ancient and rich history’[1] of the Court’s parens patriae jurisdiction. My intent for the post was to explain why this extraordinary jurisdiction of the Court, which has one criterion: what is in the best interests of the child, is evoked, and why Orders are made when those Orders may be against the wishes or the beliefs of the patient or the family. The post was off the back of an ABC news article my Mum had sent me[2]. She was curious to understand why a court would make an Order allowing the hospital to administer treatment to a severely disabled teenage girl after a diagnosis of a new medical condition, when that was against her parents’ wishes. The ABC article was referring to the decision in H v OL [2024] NSWSC 271 (‘H v OL’).

It is always difficult, for all involved, when the Court is asked to exercise its parens patriae jurisdiction. A minor, who may or may not be ‘Gillick competent’, has placed in the hands of a neutral and independent third party, a Judge, a potentially life altering decision.

Before the decision in H v OL, in early 2024, the New South Wales Supreme Court also heard and decided H v AC [2024] NSWSC 40 (‘H v AC’). Coincidently, in both matters two female teenagers had been diagnosed with cancer, who each had good prospects for recovery if the recommended treatment were completed, but in circumstances where both teenagers would most certainly die if that treatment were not administered. A Court Order was sought in H v AC as the patient had declined to continue her treatment on account of her religious belief that her cancer had been cured by way of a miracle; and in H v OL the parents of a severely disabled teenager did not wish for her to undergo the treatment.

Both matters were challenging legal decisions for different reasons.

H v AC

As His Honour Meek J set out at the introduction of H v AC[3]:

“Events bearing upon the inestimable sanctity of life and its intersection with faith beliefs tend to give rise to some of the most palpable forensic debates and challenging legal decisions.”

AC was 16 years old when in July 2023 hip pain quickly led to a diagnosis of Ewing sarcoma – a ‘highly malignant and aggressive cancer[4]’ in the bone[5]. AC underwent medical treatment namely a “schema” being the start of a cycle of five specific chemotherapy drugs at a hospital in Sydney, away from her home. The treatment ordinarily requires 17 cycles of treatment – six in the induction phase and 11 in a consolidation phase[6] delivered in ‘blocks’. The intent was for AC to also undergo radiotherapy. AC’s treatment started in early August 2023, and she completed four of the first six treatment cycles, with the fifth cycle scheduled to have commenced in mid-September 2023[7]. She had not commenced the radiotherapy. On 25 September 2023, AC underwent an MRI of the pelvis for which the cancer was not readily detectible on the scans[8] in that there had been a ‘spectacular decrease’ in the size of the tumour in her pelvis and the lung nodules were no longer visible[9].

AC and her parents were devout Christians and AC was of the belief ‘that God had been active in her plight and that her cancer [had] been cured by way of a miracle’[10]. She declined any further treatment on or about 4 October 2023[11].

Her treating Doctor’s opinion was that the cancer was not cured, and AC still required treatment[12]. His evidence before the Court was that had he had ‘not encountered any circumstances where Ewing sarcoma has been cured after only four cycles of chemotherapy and without either surgery or radiotherapy as well’[13]. He maintained that there were persisting microscopic amounts of cancer not readily detectable on an MRI or PET scan that would be the source of tumour growth, and he informed AC there was a ‘100% likelihood of the tumour progressing over the next several months to 1 to 2 years’ for which that tumour regrowth was likely to be treatment resistant and ‘without further treatment, the cancer would relapse, her disease would be incurable, and she would die’[14]. As the Court noted, this was an educated guess on the Doctor’s part[15].

At the Hearing, AC maintained her position, as she had communicated to her doctors, that she did not wish to have the recommended treatment. She believed she had been cured of cancer given the “miracle” that had occurred[16]. At the beginning of his decision, his Honour sets out an interesting analysis of the noun “miracle” and its contextual meaning from the ordinary dictionary definition to the use of the word in religious texts along with the consideration of prayer[17]. This discussion was relevant given AC’s stout belief and the ‘evidence that AC believes that if the cancer returned it would represent God’s will, and her belief of death is that she would be returned to Jesus and have an ‘eternal life in heaven’[18].

On the back of AC’s religious beliefs, the first issue involved whether AC had the capacity to make the decision to cease her treatment. That is, was she ‘Gillick competent’. It was the plaintiff’s concern that AC ‘may not have capacity to refuse consent to the recommended treatment on the basis that she does not have a sufficient understanding [of the medical evidence] to give a valid consent’ given the expert opinion was, inter alia, the cancer had not been cured and will inevitably return.[19]’ His Honour considered the case authorities as to Gillick competence following submissions made by Counsel for AC on those authorities and the criteria which is applied in determining that issue. Meek J referred to Re A (2022) 11 QR 1 which had casted doubt whether Re Imogen (No 6) [2020] FamCA 761 correctly stated the law on the issue of Gillick competent[20]. Boddice J (as he then was) set out in Re A,the first issue to be properly considered is whether the child is Gillick competent because if so, ‘then subject to some obiter dicta … that really should be the end of the matter’[21], though His Honour did make the declaration sought in Re A.

As the decision in H v AC proceeds to discuss, it may not always be such a simple decision even where a child is Gillick competent but does not want to continue with lifesaving treatment. In determining the capacity issue, Meek J considered AC’s evidence as to her belief and understanding of the risks in ceasing treatment early against the evidence attesting to her personal character including, inter alia, that she is ‘a mature and intelligent young person’ who was completing a compressed year 11 and 12 HSC programme[22]. Experts who had assessed AC on the capacity issue, gave evidence that AC had ‘sufficient understanding and intelligence to process the medical information’ she had been provided with[23], though his Honour accepted that the medical evidence was ‘clearly to the effect that the cancer subsists in AC’s body.[24]’ In consideration of all the material and submissions before him, Meek J ultimately accepted that AC ‘has the ability to make decisions,’ including whether to continue or refuse the treatment[25]. However, in this case, that was not the end of the matter.

His Honour then went onto consider whether the treatment should be ordered with Counsel for AC acknowledging that a ‘finding that AC has capacity would not necessarily be determinative of the question whether treatment is in her best interests.[26]’ AC’s Counsel submitted a number of considerations as to why it was not in AC’s best interests to have the treatment imposed upon her against her will (and that of her parents)[27] and stating that AC has ‘not ignored the medical evidence’ but believes she is free from cancer and therefore does not require the treatment[28].

In careful and deep consideration of all material, submissions and case authority, Meek J held that while he had found AC to be Gillick competent, and the need for the Court to act cautiously when exercising its parens patriae jurisdiction, it was his view that he should authorise and direct the recommended treatment be administered to AC[29]. Amongst Meek J’s numerous considerations, was that the ‘sanctity of life is an important consideration to be not merely accorded respect but appropriately weighed, as is the medical evidence, AC’s religious beliefs, AC’s autonomy of decision-making, and her right to bodily integrity.[30]’

Accordingly, the Court Order included a declaration that the responsible medical practitioners, nursing and other staff at the Hospital may lawfully carry out on AC medical treatment, including local therapy to the pelvis: surgery and/or radiotherapy, whole lung radiation, continuation of chemotherapy and associated supportive care measures.

H v OL

In contrast, to that if H v AC, Gillick competence was not an issue for the Court to resolve in H v OL.

At the time of the decision, OL was a 14 (nearly 15) year old girl with a number of underlying health conditions[31] such that she was considered to be severely disabled and has a development age of between 18 months and 3 years[32]. By Affidavit evidence, OL’s mother set out the history to her pre-existing morbidities and the practical requirements of caring for OL[33]. OL had been diagnosed with Pre B Acute Lymphoblastic Leukemia[34] which requires a ‘treatment regime [that] is debilitating, intrusive and will extend over two years and three months’ but comes with a 90% survival chance[35]. Without the treatment she would pass in about four weeks[36]. OL’s mother Affidavit set out that OL’s challenging behaviours had worsened since her hospitalisation for treatment and that it would often require three nurses and her parents to forcibly restrain her with a play therapist used for distraction, which was ‘very distressing for OL’[37]. On one occasion that forcible restraint remained in place for two hours to enable a blood transfusion and on another a general anaesthetic was administered to allow the transfusion.[38] It was very likely further general anaesthetics would be administered to provide the treatment with the only other option being the use of physical restraint[39].

It was OL’s mother’s wish that OL did not receive the treatment but that she underwent palliative care and be allowed to die peacefully at home[40]. As was observed in the decision, this was not based on ‘any religious or cultural belief’[41] but ‘derived completely from her love for her daughter and her desire to avoid further suffering to an already medically challenged child’[42].

Part of the medical evidence considered and acknowledged that OL had a shortened life expectancy of approximately 25% on account of her pre-existing morbidities, specifically her developmental and epileptic encephalopathy/epilepsy. OL’s paediatric neurologist also gave evidence and stated her view that the treatment regime would be difficult for OL to tolerate and that she [the doctor] was concerned that OL would not understand the treatment and why it was being administered[43], along with the issue of the difficulty in administering the chemotherapy which could also have the adverse effect of lowering her life expectancy[44].

Another of OL’s treating practitioners, her paediatrician, unequivocally supported OL’s mothers decision that treatment not to be administered and that it would not be in OL’s best interests to attempt the curative chemotherapy[45]. It was his view that ‘OL would not cope with the pain and consequences of intensive chemotherapy or transplantation.[46]’

OL’s doctor acknowledged in evidence that the treatment would be more difficult to administer on account of OL’s pre-existing conditions such that the ‘burden of the treatment to [OL] and her family may be greater’ than what would ordinarily be to another child and their family[47].

His Honour embarked on a short analysis of similar case authority including Re Ryder [2020] NSWSC 895, which differed from that of OL, as that child’s cancer was in remission and did not have other pre-existing medical conditions. His Honour Elkaim AJ, recognised that the treatment would be very difficult particular for OL and her mother, but that did not mean it should not be undertaken[48]. His Honour also considered that OL had been living with her pre-existing conditions her whole life, which formed part of her life and her life ‘is not entirely without joy’ as shown by the photos exhibited to affidavit material. She also attends a special school which she apparently enjoys[49].

His Honour held at [48] that there was ‘little alternative but to make the orders sought’ and while the treatment would be onerous, it will hopefully return her to her pre-leukaemia condition and will allow her to continue the life that she already had. He further held that not making the orders was effectively a death sentence[50]. The Court also ordered that the Hospital is to engage with OL’s parents to ensure they are consulted throughout the treatment.

These two decisions serve to highlight just what a difficult decision the Court is faced under its parens patriae jurisdiction particularly in the context of medical treatment. As set out at the beginning, the only criterion for the Court is what is in the best interests of the child for which the complexity of the issue is increased where a child may be found Gillick competent. Undoubtedly, these are never easy decisions for all involved, least of all the child patient and their parents.  

[1] H v AC [2024] NSWSC 40, at [46] (‘AC’).

[2] See Court orders cancer treatment for teenager with severe disabilities in rural New South Wales – ABC News published 21 March 2024.

[3] AC, above n 1, [1].

[4] Ibid [225].

[5] Ibid [2].

[6] Ibid [100].

[7] Ibid [104].

[8] Ibid [105]-[106].

[9] Ibid [109].

[10] Ibid [75].

[11] Ibid [118].

[12] Ibid [106].

[13] Ibid [110].

[14] Ibid [119].

[15] Ibid [120].

[16] Ibid [126].

[17] Ibid [77]-[88].

[18] Ibid [74].

[19] Ibid [170]-[171].

[20] Ibid [173].

[21] Re A (2022) 11 QR 1, at [15].

[22] AC, above n 1,[185]-[186].

[23] Ibid [193].

[24] Ibid [180].

[25] Ibid [197].

[26] Ibid [210].

[27] Ibid [200]-[201].

[28] Ibid [229].

[29] Ibid [231].

[30] Ibid [232].

[31] H v OL [2024] NSWSC 271at [11] (‘H v OL).

[32] Ibid [12(3)].

[33] Ibid [12].

[34] Ibid [11].

[35] Ibid [13].

[36] Ibid [4].

[37] Ibid [12(7)].

[38] Ibid [12(8)].

[39] Ibid [14].

[40] Ibid [15].

[41] Ibid [15].

[42] Ibid [15].

[43] Ibid [31].

[44] Ibid [32].

[45] Ibid [33].

[46] Ibid [33].

[47] Ibid [22].

[48] Ibid [46].

[49] Ibid [44].

[50] Ibid [49].