Refusal of lifesaving treatment on religious grounds

The issue of consent to lifesaving treatment is an ongoing concern for medical professionals in circumstances where patients may refuse such treatment based on their own religious beliefs. This has been seen over time both in Australia and overseas, including blood transfusions for patients who are Jehovah’s Witnesses.¹ The deliberation of these issues involves the consideration of whether the patient has Gillick competence, being the capacity to make decisions about their own medical treatment. The recent decision of H v AC [2024] NSWSC 40 revisits this issue and highlights the tension which can occur between lifesaving medical treatment and some religious beliefs.

H v AC involved a 17-year-old girl (AC) who had been diagnosed with Ewing sarcoma, a cancer in the bone, at age 16 after experiencing a sudden onset of hip pain. AC came from a devout Christian background. She had undergone 4 out of 17 cycles of chemotherapy treatment for the cancer but had not yet commenced radiotherapy. Following the 4 cycles of chemotherapy, she underwent an MRI which according to her treating oncologist, revealed a ‘spectacular decrease’ in the size of the tumour in the pelvis and that the lung nodules were no longer visible.² However, he maintained that he had never seen any circumstances in which a Ewing sarcoma had been cured after only 4 cycles of chemotherapy and without radiotherapy or surgery and that she needed to continue treatment.³ AC wished to cease treatment at this stage, citing that ‘God has been active in her plight and that her cancer had been cured by way of a miracle‘.⁴ Her parents also supported her decision. Her oncologist gave evidence that she ‘absolutely, definitely’ still had cancer which would regrow without further treatment.⁵ Her oncologist advised her that if she did not continue with treatment there was a 100% chance of the tumour progressing, the tumour would likely be resistant to further treatment and without further treatment, her disease would likely be incurable and would likely be more difficult to treat and ultimately fatal.⁶ In contrast, with treatment she had a 50% chance of a permanent cure.⁷ There was evidence that AC believed that if her cancer returned it would represent God’s will and she would have ‘eternal life in heaven’⁸ but also that if subsequent scans demonstrated the cancer had recurred, she would likely agree to re-start treatment.⁹

The future recommended treatment consisted of 10-13 more cycles of chemotherapy as well as radiotherapy to the primary pelvic tumour and lungs.¹⁰ It was acknowledged that the future treatment would have an impact on AC from a physical, psychological and social perspective.¹¹

The hospital treating AC brought an application seeking to invoke the parens patriae jurisdiction of the Court which is ‘an inherent, protective jurisdiction of the Court exists for the protection of those (including, but not limited to, minors) who are unable to protect themselves‘.¹² The hospital sought a declaration that AC has the capacity to refuse the recommended treatment, or in the alternative, if the Court determined that AC did not have the capacity to refuse the recommended treatment, the hospital sought a declaration that the responsible medical practitioners could lawfully carry out the recommended treatment.¹³ Interestingly, the application was not brought under s174 of the Children and Young Persons (Care and Protection) Act 1998 (NSW), on the basis that it was recommended the treatment be administered before the situation became an emergency given any delay could impact the patient’s prognosis.¹⁴

The matter was heard as an urgent hearing before Justice Meek. The submissions before the court were therefore framed as whether AC had Gillick competence, however his Honour noted that as the hospital had invoked the parens patriae jurisdiction of the Court, the Court was not necessarily bound by a finding as to whether the patient had capacity or not and that a finding on capacity was not necessarily determinative of the case.¹⁵ His Honour noted that in exercising the jurisdiction, the Court might determine that it is in the best interests of the patient to have the treatment administered, notwithstanding a finding that the patient has capacity to make a decision to refuse the treatment.¹⁶ Accordingly, rather than focusing on the issue of Gillick competence, he focused on whether it was in the ‘best interest’ of AC for the treatment to be administered.

The hospital had obtained evidence from a paediatric medical oncologist and clinical and forensic psychologist. AC relied on her own affidavit evidence and her parents also filed affidavits and a report from a clinical psychologist. The representatives for AC made submissions to the effect that AC was Gillick competent and so should be able to make decisions about the recommended treatment. Similar submissions were made by the legal representatives for her parents.¹⁷

Justice Meek ultimately found that AC did have Gillick competence and ‘has the ability to make decisions, including the ability to make a decision regarding refusal of the recommended treatment or continuation of the treatment‘.¹⁸ In coming to this conclusion his Honour considered AC’s beliefs and the medical evidence including from the clinical psychologist retained by her parents.

Despite accepting that AC had the capacity to make decisions regarding her treatment, his Honour went on to consider whether ordering the treatment be administered would be in the best interest of AC regardless. Ultimately, his Honour concluded that it was in AC’s best interest to proceed with the treatment, citing 13 points of consideration,¹⁹ which can be briefly summarised as follows:

1. the sanctity of life is an important consideration to be appropriately weighed against AC’s religious beliefs, AC’s autonomy of decision-making, and her right to bodily integrity;
2. the right to bodily integrity as discussed in Marion’s Case;
3. the effects of treatment on AC which cannot be underestimated;
4. that AC tolerated the first four cycles of chemotherapy ‘better than many‘ according to her oncologist and was and not overtly significantly distressed by the treatment thus far;
5. because of the timing of AC’s refusal of further treatment, there was no certainty as to how she might handle the combination of chemotherapy and radiotherapy;
6. AC had not indicated that she has found the treatment thus far, or expected any of the recommended treatment, to be intolerable in terms of pain or psychological distress;
7. whilst frankly acknowledging the arduous nature of the recommended treatment, her oncologist indicated the physical effects of the further chemotherapy treatment will be temporary and he would expect a full recovery;
8. in the long term, and assuming survival from the cancer, the left-hand side of the pelvis will be weakened and will not return to normal due to a combination of the cancer and the radiotherapy;
9. there was a risk of arthritis and the possible need for orthopaedic intervention in the future;
10. there may be some risk of infertility;
11. the chemotherapy proposed included a drug with a modest risk of causing impaired cardiac function in subsequent decades;
12. the chemotherapy and radiotherapy are both associated with a small risk of leading to a new, secondary malignancy in subsequent years or decades; and
13. whilst his Honour accepted that undergoing treatment would result in some loss of quality of usual teenage life including enjoying friends, school and her church community, AC confirmed that if the cancer did come back she would most likely re-engage with medical treatment at that point.

On that basis, it was ordered that AC undergo the proposed treatment including local therapy to the pelvis consisting of surgery and/or radiotherapy, whole lung radiation, continuation of systemic chemotherapy and associated supportive care measures, despite the finding that she had Gillick competence.²⁰ This case highlights the broad scope of the Court’s power under the parens patriae jurisdiction which can look beyond issues of Gillick competence to the best interest of the child more broadly.

This article was written by Brit Mainhoff, Partner, and Victoria Upton, Senior Associate.

¹See for example E & F (Minors: Blood Transfusion) [2021] EWCA Civ 1888.
²H v AC [2024] NSWSC 40 at [109].
³Ibid at [110].
⁴Ibid at [76].
⁵Ibid at [114].
⁶Ibid at [119].
⁷Ibid at [219].
⁸Ibid at [89].
⁹Ibid at [160], [165].
¹⁰Ibid [136].
¹¹Ibid at [144].
¹²Ibid at [47].
¹³Ibid at [13]-[14].
¹⁴Ibid at [30]-[31].
¹⁵Ibid at [39].
¹⁶Ibid at [40].
¹⁷Ibid at [175].
¹⁸Ibid at [197].
¹⁹Ibid, set out at paragraph [232].
²⁰Ibid at [231] and [240].