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This article was originally published in the Australian Health Law Bulletin edition 32.4 in April 2024.
This article was co-authored by Jimmy Zhang, Graduate, Melbourne
Summary
The dilemma which the case of H v OL [2024] NSWSC 271 gives rise to is one that no parent should ever have to face:
- consent to life-saving treatment for their child, where their child will then live a life of “ill-health and anguish”;[1] or
- withhold consent and condemn their child to die, but spare their child from “debilitating” and “intrusive” treatment.[2]
The law’s insistence that the best interests of the child shall be paramount is “easily stated and universally applauded”,[3] but this case illustrates the difficulties that are encountered when trying to put it into practice. In this case, the Supreme Court of New South Wales (the Court) authorised medical treatment to be provided to “OL” to treat her acute lymphoblastic leukaemia, contrary to the wishes of OL’s parents. This article provides an overview of the Court’s decision and its implications.
Background
OL was born in 2009 and is 15 years old. OL has health conditions including drug-resistant epilepsy, developmental and epileptic encephalopathy, severe developmental delay, and Autism Spectrum Disorder level 3. Due to a gene mutation, OL also has a severe seizure condition causing her to have seizures every day.
On 5 March 2024, OL was diagnosed with Pre B Acute Lymphoblastic Leukemia. Had there not been this diagnosis, OL’s life expectancy was about 53 years. Without receiving medical treatment, her life expectancy was two to four weeks. The treatment regime would extend over two years and three months and be “debilitating” and “intrusive”.[4] It would further be complicated by OL’s behavioural difficulties, as she would likely pull out cannulas and tubes, and would need restraints and general anaesthetic to receive treatment. The treatment however had a 90% chance of achieving “survival”.
OL’s parents preferred for OL to receive palliative care and be allowed to die at home. Their wish was not based on any religious or cultural belief, but rather on their desire for OL to avoid further suffering.
As OL had no decision-making capacity of her own,[5] the Hospital sought orders for the Court to exercise its parens patriae jurisdiction and authorise the Hospital to provide medical treatment to treat OL’s leukemia.
The law
The Supreme Court of each state and Territory, in its parens patriae jurisdiction, has the power to make decisions about medical treatment for children. The jurisdiction’s existence “is founded on the obvious necessity that the law should place somewhere the care of individuals who cannot take care of themselves”.[6]
The jurisdiction is “essentially protective in nature”,[7] whereby the court is placed in a position “to act as supreme parent of children”[8]. The jurisdiction extends “as far as is necessary for protection”,[9] but does not extend to authorising non-therapeutic procedures which will not “safeguard, secure or promote, or prevent the deterioration in, the physical or mental health of the patient.”[10] When exercising the jurisdiction, there is only one criterion: what is in the best interests of the child.[11] However, the jurisdiction must be exercised cautiously:
“In exercising the jurisdiction to control or to 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 should be suspended or superseded.”[12]
Where the child will die if life-saving treatment is not provided, “[t]here is without doubt a very strong presumption in favour of a course of action which will prolong life”.[13] However, the presumption is not irrebuttable, and the pain and suffering and quality of life which the child will experience if life is prolonged is to be taken into account, as well as the pain and suffering involved in the treatment itself.[14] This will lead to cases “in which the answer must be that it is not in the interests of the child to subject it to treatment which will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child's, and mankind's, desire to survive.”[15]
Decision
The Court, acknowledging that the decision was “difficult”,[16] made the orders sought by the Hospital and authorised medical treatment to be provided to OL to treat her leukemia. Hospital staff were ordered to consult with OL’s parents throughout the treatment. The Court considered it had little alternative as to not do so was “effectively a death sentence.”[17] The Court emphasised that despite OL’s disabilities, she was living a life. OL attended a special school and enjoyed it. OL would, but for the leukaemia, have continued to live a life. The Court could not take that away from her, as onerous as the treatment would be.
Implications
This case reiterates that the courts will zealously protect the sanctity of human life.[18] As the High Court has emphasised, “all human beings are valuable in, and to, our community, irrespective of any disability or perceived imperfection.”[19] It is beyond the prerogative of any parent or court to look down upon a person with health complications or disabilities and to judge the quality of that person’s life to be so low as to not be deserving of living anymore.[20]
In a review of Australian cases that have considered whether it is in a child’s best interests to receive life-saving treatment, Willmott et al. identified that life-saving treatment was not authorised in only six decisions over a 30-year period.[21] Of those decisions where treatment was not authorised, the chance of survival or cure was extremely low to zero. Accordingly, where a proposed treatment has a high likelihood of saving a child’s life and returning them to their previous condition, a court will most likely authorise that treatment to be provided.
It will be interesting to see if this matter returns before the Court and whether the order will be varied or extended. While the prospects of success of any treatment will likely remain the same, the impacts on the child may become apparent. It appears that in cases where the child is benefitting from the treatment, and the child remains at risk in the absence of continuing treatment, a court will likely allow for the provision of treatment to continue. For example, in Re Beth (No 3) [2014] VSC 121, Beth was an intellectually disabled girl who had suffered significant sexual abuse and violence in the course of her childhood, resulting in serious behavioural problems. In May 2013, the Supreme Court of Victoria made orders authorising Beth to be placed in a purpose-designed residential facility and the use of lock-up facilities and restrictive interventions in the course of her care. The orders were the subject of review on or before Beth’s 17th birthday. Upon that review, the Supreme Court noted that, despite the significant interference with her liberty and rights, the treatment was benefitting Beth and she remained at ongoing risk without care. Accordingly, the court extended the orders until Beth’s 18th birthday.
Final remarks
Claims concerning whether to allow or withhold life-saving treatment to a child are difficult as a court must decide whether to substitute its own view of what is in the child’s best interests over those of the child’s parents, where the parents’ views are supported by love and commitment. Although OL’s case was stark, in that she would have died within a month had treatment not been provided, there will undoubtedly be cases in the future where the considerations are more finely balanced.
[1] H v OL [2024] NSWSC 271 at [44] (“OL”).
[2] OL (n 1) at [13].
[3] In Re T [1997] 1 WLR 242, 253.
[4] OL (n 1) at [13].
[5] OL (n 1) at [12].
[6] Marion’s Case (1992) 106 ALR 385, 411.
[7] Marion’s Case (1992) 106 ALR 385, 428.
[8] Marion’s Case (1992) 106 ALR 385, 428.
[9] Marion’s Case (1992) 106 ALR 385, 411.
[10] Maw v Western Sydney Area Health Service [2000] NSWSC 358 at [41].
[11] Fountain v Alexander (1982) 40 ALR 441, 453. The considerations a court will have regard to when determining if treatment is in the best interests of a child are set out in Re Marion (No 2) (1992) 17 Fam LR 336, 351-352.
[12] Marion’s Case (1992) 106 ALR 385, 428.
[13] In Re J [1991] Fam 33, 46.
[14] In Re B [1981] 1 WLR 1421, 1424.
[15] In Re J [1991] Fam 33, 47.
[16] OL (n 1) at [38].
[17] OL (n 1) at [49].
[18] See for example Harriton v Stephens (2006) 226 ALR 391, 418; Wilson v R (1992) 107 ALR 257, 277.
[19] Harriton v Stephens (2006) 226 ALR 391, 451-452.
[20] See In Re J [1991] Fam 33, 43-44.
[21] Willmott et al. (2018) ‘When is it in a Child’s Best Interests to Withhold or Withdraw Life-Sustaining Treatment? An Evolving Australian Jurisprudence’ 25(4) Journal of Law and Medicine 994.
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