Children and end of life decision-making

Who can make decisions about medical treatment for children?

Consent is required before medical treatment can be provided to a child under the age of 18. Depending on the circumstances, in particular the age and maturity of the child, consent may be given by the child, the child’s parent or guardian, or a court.

Children and parents

Generally, where a child is under the age of 18, the child’s parents are the lawful decision-makers and have the power to consent to their child’s medical treatment. However, where a child is found to be competent he or she can lawfully make their own treatment decisions.

In Victoria and Tasmania, competent children also have the ability to make their own medical treatment decisions (i.e. without parental consent) through an Advance Care Directive. Similar to adults, the Directive will only apply when a child loses decision-making capacity. For further information visit Advance Care Directives Victoria and Tasmania.

In most Australian States and Territories a person becomes an adult and able to make their own treatment decisions upon reaching the age of 18. In South Australia however, a child who is 16 years of age (and, in some case, under 16) can also consent to treatment.

Courts

In all States and Territories the Supreme Court and the Family Court can hear cases relating to medical treatment for children, and may provide (or refuse) consent to treatment. Most cases are heard by the Supreme Court, which has power to make decisions for children as part of its parens patriae (protective) jurisdiction. However, the Supreme Court exercises its powers cautiously, and only in cases where the court’s intervention is needed.

When consent is not required

Consent to treatment for a child is not required from a parent, the child or the court:

• if urgent treatment or a blood transfusion is needed, or
• to withhold or withdraw futile or non-beneficial treatment.

What end of life treatment decisions can parents make?

Generally, a child’s parents (or legal guardian) can make most decisions about medical treatment for their infant, young child, or non-competent older child. This includes decisions to consent to or refuse treatment, and to withhold or withdraw life-sustaining medical treatment.

The paramount consideration of parents (and courts) when making these decisions is the child's best interests. In Victoria and Tasmania legislation outlines other factors to be considered when making decisions about children.

Life-sustaining treatment will generally only be withheld or withdrawn when clinicians believe treatment is not in the child’s best interests, or is of no benefit and futile. This might occur, for example, in the case of a premature infant with severe disabilities who is going to die, or a young child in the final stages of a terminal illness.

Parental consent is not required to:

• withhold or withdraw treatment that is futile or non-beneficial;
• provide urgent treatment; or
• give a blood transfusion to a child.

What factors are considered when making a decision about life-sustaining treatment for a child?

Common law

At common law the paramount consideration for parents and courts when making decisions to withhold or withdraw life-sustaining treatment is the child’s best interests. Such decisions are usually made in consultation with the child’s health professionals. If all parties agree, there will be no reason to approach the courts.

There are no set legal criteria for a child’s best interests so this is determined on a case by case basis. In relation to withholding and withdrawing treatment, some key factors the Australian courts have previously considered are:

• the likelihood that the treatment will cure or significantly improve the child’s health;
• medical opinion about the child’s diagnosis, prognosis and treatment;
• the child’s views and wishes, if any have been expressed;
• the parents’ views and wishes; and
• quality of life considerations now and in the future considering the child’s physical and cognitive impairments, and the benefits and burdens of treatment.

In most Australian cases the courts’ decision-making about best interests has been consistent with medical evidence, but this may not always be the case.

The parents’ and child’s views about treatment and best interests will be considered but are not decisive. Courts have regard to the age and maturity of the child when weighing their views but are unlikely to follow those views if that would cause the child harm.

Considerations of life or death are also significant. See for example State of Queensland v Nolan, where the decision to separate conjoined twins would result in either one or both twins dying, and Re Heather.

For a recent case involving parental decision-making and best interests for younger children at the end of life see Director Clinical Services, Child & Adolescent Health Services v Kiszko & Anor, and for cases about infants see Re Baby D (No 2) and Mohammed’s case.

Victoria

In Victoria, where a child does not have capacity the medical treatment decision-making legislation outlines the factors to be considered by a child’s medical treatment decision-maker (i.e. their parent) when making treatment decisions. These include the child’s values and preferences, the effects of treatment, and any alternatives to arrive at the decision the child would have made if she or he had capacity.

For younger children and infants, determining the child’s values and preferences is likely not possible. In those cases, the child’s parents must make a decision that promotes the child’s personal and social wellbeing. For further information about making treatment decisions in Victoria, see process 2 in 'How do medical treatment decision-makers make decisions?' on the Victorian Treatment Decisions webpage.

Tasmania

Under the Guardianship and Administration Act 1995 (Tas), when the child’s decision-maker (their parent and guardian) makes a decision, the child’s best interests are paramount. Consideration must also be given to:

• protecting the child from harm,
• promoting the child’s development, and
• strengthening, preserving and promoting positive relationships between the child and their parents, family members, and other significant people in the child’s life.

Decision-makers must also observe the decision-making principles outlined in the legislation. The principles are discussed on the Tasmanian Treatment Decisions webpage under ‘How do substitute decision-makers make decisions?’. The principles include providing the child with necessary decision-making support, using the child’s views, wishes and preferences to inform decision-making, and preserving the child’s cultural and linguistic environment.

What happens if a parent refuses life-sustaining treatment for their child?

As a general rule, parents of young children are able to decide whether or not medical treatment is in their child’s best interests. This includes decisions about whether or not to have life-saving treatment.

If parents refuse life-sustaining treatment for their child contrary to medical advice their decision may be challenged. Clinicians and parents may undertake dispute resolution, such as mediation, to try to resolve the disagreement. In rare cases when the dispute cannot be resolved, an application may be made to a court. If the treatment involved is clinically recommended, a court will usually override the parents’ decision and order that treatment be given.

In Victoria, if a parent refuses significant treatment for a child and the health practitioner reasonably believes the child’s preferences and values about treatment are unknown or cannot be inferred by the parent, they must notify the Public Advocate. If that Office considers the refusal to be unreasonable, it can apply to the Victorian Civil and Administrative Tribunal for a review. The Tribunal may decide to override the parent’s refusal. Further information is available from the Victorian Office of the Public Advocate.

When can a child make their own decisions about medical treatment?

A child who is competent may make their own treatment decisions without parental consent, including decisions to withhold or withdraw life-sustaining treatment.

A child will be competent – often called ‘Gillick-competent’ – if they have sufficient understanding and intelligence to fully understand the treatment decision proposed. The ability to ‘fully understand’ means more is required than simply understanding the general nature of the treatment decision.

The term ‘Gillick-competent’ arose from a landmark British case (Gillick v West Norfolk and Wisbech Area Health Authority). The issue in that case was whether a girl under 16 could lawfully give her own consent to receive contraceptive advice and treatment, without parental consent. The House of Lords decided that a child is Gillick-competent, meaning they can make decisions about their own health care and treatment without parental consent, if they achieve 'sufficient understanding and intelligence to enable him or her to understand fully what is proposed'. The court stated that this is because a parent’s authority over a child is a dwindling right that changes and yields to the child’s right to make his or her own decision as the child matures and develops.

Each case will depend on the individual child and the decision that needs to be made. A child may be Gillick-competent for some medical decisions and not for others. If a child is not Gillick-competent the child’s parents will be required to make the treatment decision in accordance with the child’s best interests.

South Australia, Victoria and Tasmania also have legislation about decision-making by competent children.

South Australia

Under the Consent to Medical Treatment and Palliative Care Act 1995 (SA), a child under 16 is able to consent to treatment if the treating health professional considers the child is ‘capable of understanding the nature, consequences and risks of treatment’. The administering health professional must consider the treatment to be in the best interests of the child’s health and wellbeing, and another health professional must personally examine the child and support the treating health professional’s opinion.

The law also permits a child over 16 to make their own treatment decisions, and his or her decision has the same legal effect as an adult’s. It is currently unclear whether the Supreme Court would be able to override a decision to refuse treatment of a 16 or 17 year old (e.g. if the refusal was considered not to be in the child’s best interests).

Under the Medical Treatment Planning and Decisions Act 2016 (Vic) there is a decision-making capacity test applicable to children in some circumstances. This is the same test as for adults. However, unlike an adult, there is no presumption of capacity for children, and a child must show that they have capacity.

A child who meets the test can:

• Make an Advance Care Directive about future medical treatment. This is discussed on the Victoria Advance Care Directives webpage.
• Appoint a support person. Information about the role of a support person is discussed on the Victoria Treatment Decisions webpage.

It is unclear whether the test for decision-making capacity overrides or replaces Gillick-competence for other medical decisions in Victoria.

Further information about medical treatment for people under 18 years is available from the Victorian Office of the Public Advocate.

Tasmania

Under the Guardianship and Administration Act 1995 (Tas), a child will have the ability to make their own treatment decisions if the child is sufficiently mature to decide, and can:

• understand information relevant to the decision,
• retain that information for a sufficient time to make and communicate the decision,
• use or weigh information relevant to the decision, and
• communicate the decision e.g. by speech, gesture, or other means, including with support.

There is no presumption of capacity for children. Only when a health practitioner is satisfied that a child meets this test can they make their own treatment decisions, and make an Advance Care Directive about future medical treatment. For further information visit the Tasmania Advance Care Directives webpage.

Who decides whether a child is competent, and how?

Whether or not a child is Gillick-competent is a decision made initially by the child’s health practitioner. However, where there is disagreement e.g. between health practitioners and a child, a court may decide if a child is competent.

For a court to agree that a child ‘understands fully what is proposed’, the child must understand not only the nature of the medical advice but what is involved in the treatment. Beyond this, there are no established criteria to guide a health practitioner or court in deciding whether a child is Gillick-competent. Based on cases to date, courts have considered the following attributes when determining whether a child is Gillick-competent:

• the child’s age, maturity, intellect, life experience and psychiatric, psychological and emotional state;
• the child’s ability to understand the nature and consequences of the illness and proposed treatment (including physical and emotional consequences both in the short-term and long-term); and
• the child’s ability to understand the decision’s broader consequences, including any impact on other people, and moral and family issues.

Under the legislation in South Australia the child’s health practitioners will decide if the child has decision-making capacity. Similarly, in Tasmania, a registered health practitioner must be satisfied that the child has decision-making ability for the decision.

Can a competent child refuse life-sustaining medical treatment?

Yes. A child who is Gillick-competent is able to refuse life-sustaining medical treatment, but their refusal may be overridden by a court (see the question below).

Can a competent child’s decision to refuse life-sustaining medical treatment be overridden?

A Gillick-competent child’s decision to refuse life-sustaining medical treatment can be overridden by the Supreme Court or Family Court if the court believes it is in the child’s best interests to do so e.g. if the treatment is needed to save the child's life (see for example the case of Minister for Health v AS and H v AC. This is because courts have recognised that children are vulnerable and therefore courts have the right to intervene to protect the child’s welfare.

The courts have noted that overriding a Gillick-competent child’s decision should not be done lightly and that the child’s views should be taken into account. In X v The Sydney Children's Hospital Network the court commented that courts might be reluctant to intervene to override the child’s decision where, in refusing the treatment, the child has assessed the advantages and disadvantages of the treatment and the likelihood of an improved quality of life, and where the choice is one about which ‘reasonable minds might differ’.

In Australia it is unlikely to be the case that parents can consent to treatment that a Gillick-competent child has already refused, however this issue has not been decided by the courts.

Can urgent treatment be provided to children without consent?

Australian law recognises the ‘emergency principle’. It allows medical treatment to be provided to a child if obtaining consent is not possible and there is an urgent need for treatment e.g. when the child’s life is in danger. Clinicians can therefore provide urgent treatment even if the child or the child’s parents refuse it.

Some States and Territories also have legislation about urgent treatment for children. The Northern Territory, New South Wales, Victoria, and South Australia have specific laws allowing urgent treatment to be provided to children without consent. These laws vary, but broadly provide that health professionals can provide urgent treatment without consent if it is needed to prevent the child dying or suffering serious harm or disability. There are further requirements in some jurisdictions:

• In South Australia, if a child is under 16 years of age, the consent of a parent or guardian must be sought if they are available. If they refuse consent, the urgent treatment may be administered despite the refusal if it is in the best interests of the child.

• In the Northern Territory, a health practitioner cannot administer urgent health care if they are aware the child previously refused the treatment when the child had decision-making capacity.

• In Victoria, urgent treatment can be given without consent if it is necessary, as a matter of urgency, to save the child’s life, prevent serious damage to their health, or prevent the child suffering significant pain or distress. However, if a competent child has refused the  treatment either in a valid instructional directive in an Advance Care Directive which is available (i.e. accessible) at the time, or in some other way, that refusal must be respected (except in the case of blood transfusions).

In emergency situations, a clinician can lawfully withhold or withdraw futile or non-beneficial treatment without consent.

Can blood transfusions be provided to a child without consent?

The laws in each State and Territory enable urgent blood transfusions to be given to children without the parent or child’s consent, and despite their refusal of consent.

In the Northern Territory, New South Wales and South Australia, urgent treatment laws allow blood transfusions to be provided to children without consent.

In the Australian Capital Territory, Queensland, Tasmania, Victoria and Western Australia the Human Tissue Acts allow blood transfusions to be given to children without consent, or despite a parent or child refusing consent.

In all States and Territories except New South Wales and the Northern Territory, there is a further requirement that two health professionals must believe the child is in danger of dying without the blood transfusion (in Queensland, the transfusion must ‘be necessary to preserve the life of the child’). In New South Wales and the Northern Territory, an urgent transfusion can be conducted without consent if an individual practitioner believes it is necessary to save the child’s life or prevent serious damage to health.

Is consent required to withhold or withdraw futile or non-beneficial treatment from a child?

‘Futile’ treatment is commonly used to refer to treatment which is not in the person’s best interests, cannot achieve its purpose, or is not clinically indicated. Clinicians decide whether or not treatment is futile on a case-by-case basis, taking into account a range of factors.

Where a child is not competent, a parent's consent is not required to withhold or withdraw treatment that is futile or non-beneficial.

Even if a child is Gillick-competent, a clinician may withhold or withdraw treatment they consider is futile or non-beneficial without the child's consent. Clinicians have no obligation to provide or offer treatment that is futile or non-beneficial.

If parents or a competent child disagree with a health professionals’ decision about futile treatment they can challenge the decision in court. In such cases, the child’s best interests is still the paramount consideration. In most cases  (including Great Ormond Street Hospital v Yates and Gard and Hospital v S (A Minor)) the courts have agreed with the views of the health professionals’ involved, and have confirmed that futility is largely a medical decision. However, there are cases where the courts have agreed with parents who have challenged health professionals’ assessments of futility (e.g. Tafida Raqeeb v Barts NHS Foundation Trust).

For further information about the law relating to futile or non-beneficial treatment visit the Adult Withholding and withdrawing life-sustaining treatment webpage.

Hospital v S (A Minor) [2019] NSWSC

S, a 3-year-old boy, was struck by a motor vehicle. He sustained a traumatic brain injury and a C 0/1 spinal cord injury, resulting in ventilator-dependent quadriplegia. He was mechanically ventilated, receiving artificial hydration and nutrition, and in an unresponsive coma.

There was consensus among S’s doctors that S had no conscious awareness, and that it was unlikely he would ever achieve any awareness. Without artificial, mechanical life-sustaining treatment his injuries were terminal, and all further treatment would be futile. They also believed that prolonging S’s life was inconsistent with his personal dignity, and that continuing the treatment would be unethical.

Medical opinion was divided about whether S was capable of feeling physical discomfort, and whether the physical manipulation of S, necessary to prolong his life, caused him pain and discomfort.

An application was brought by the hospital to withdraw life-sustaining treatment from S and commence palliative care. S’s parents opposed the discontinuation of treatment, but did not oppose the declarations sought by the hospital.

The Supreme Court ordered S’s life-sustaining treatment be removed and palliative care commence. The Court was persuaded by the unanimity of medical opinion. It remarked that stopping S’s treatment was justified due to the possibility he may be suffering pain and discomfort, and could suffer further ailments if life-sustaining treatment continued. The Court also noted that in the absence of any possibility of conscious existence, the dignity of the person is a real and significant factor which the Court should protect in the persons’ best interests. On futile treatment the Court said:

‘The right to receive medical treatment is not … equivalent to a right to the perpetuation of life irrespective of the circumstances. It may not be in the best interests of the patient to be given medical treatment that is excessively burdensome, intrusive or futile… the choice must be made on essentially medical considerations’.

Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2530 (Fam)

5-year-old Tafida suffered irreversible brain damage due to a ruptured arteriovenous alformation. She had minimal, if any, consciousness, and was supported in hospital on artificial ventilation. If Tafida survived her doctors believed she would have profound disability, be ventilator dependent, and require permanent intensive care. They considered it was not in Tafida’s best interests to receive further treatment and recommended to her parents she be given palliative care only.

Tafida’s parents refused to consent to the withdrawal of Tafida’s treatment, and later sought for her to be transferred to a paediatric hospital in Italy, which was willing to care for her. The Italian hospital would also explore whether she could undergo a tracheostomy. If successful, this treatment would enable her to be cared for at home on long-term ventilation. There was evidence of other children in the UK with similar long-term ventilation requirements currently being cared for at home.

The hospital opposed transferring Tafida to the Italian hospital (on the grounds it was not in her best interests to be transferred), and sought a declaration that it was in Tafida’s best interests for life-sustaining treatment to be withdrawn. Her parents disagreed. There was evidence Tafida had some understanding of her religious and cultural heritage and was developing her own religious identity. They argued that withdrawal of treatment causing death was against the beliefs and values of Tafida’s religion.

The Court concluded it was in Tafida’s best interests for life-sustaining treatment to continue. In reaching this conclusion, the Judge noted there was evidence that Tafida was unlikely to feel pain; was medically stable; that the burden of treatment on her was low; and that she was able to travel with minimal risk. There were medical views that she should continue receiving treatment so she could later return to her home, on ventilation, and be cared for by her family (who, the Judge noted, were loving and dedicated, and had a detailed, funded care plan). The Judge also remarked that continuation of treatment was consistent with the religious and cultural tenents by which Tafida was being raised, and that the sanctity of her life was of the highest importance.

Great Ormond Street Hospital v Yates and Gard (2017, EWHC, UK)

Charlie was diagnosed with infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) at aged 2 months. He was paralysed and deaf, unable to breathe without support, and suffered kidney, heart and liver problems. His prognosis was poor.

In early 2017 Charlie’s parents discovered an experimental nucleoside treatment they believed might prolong Charlie’s life. They wanted to transport Charlie to the US to receive that treatment, which they argued was in Charlie’s best interests. Charlie’s clinicians considered whether to apply for ethical permission to attempt the therapy, which had never been used on patients with Charlie’s form of MDDS. However, Charlie’s condition subsequently deteriorated, and his clinicians considered that treatment would be potentially painful and futile.

In April 2017, when Charlie was 8 months old, the hospital sought and was granted an order permitting it to withdraw artificial ventilation and provide palliative care. The Court accepted medical evidence that Charlie’s encephalopathy was so severe that the proposed therapy would be futile, and, if attempted, may subject him to further pain. Charlie’s parents unsuccessfully appealed the decision to the Court of Appeal (May 2017), and the Supreme Court and the European Court of Human Rights (June 2017).

In July 2017, the hospital reopened the case after widespread international publicity resulted in new evidence about the possible benefits of nucleoside treatment to Charlie. However, prior to the case being decided further MRI scans showed that Charlie had little or no muscle in some parts of his body. As a result his parents accepted that further treatment was unlikely to assist Charlie, and that it was in his best interests to allow him to die.

Charlie’s parents withdrew their court application, and the High Court issued a judgment reaffirming its April 2017 orders that Charlie’s artificial ventilation be withdrawn, and palliative care provided.

Director Clinical Services, Child & Adolescent Health Services v Kiszko & Anor [2016] FCWA 75

This case involved a dispute between doctors and parents about medical treatment for K, a 6 year old child. In 2015 K was diagnosed with a brain tumour and underwent surgery. Following the surgery K’s doctors recommended he receive chemotherapy and radiation treatment. There was a risk of significant side effects from the radiotherapy including hearing loss, stroke, long-term hormone deficiencies, visual impairments including legal blindness, and ‘depression of intellect’. K’s parents preferred alternative and natural treatments, and palliative care, and objected to the proposed treatment. There was a delay in commencing treatment due to ongoing disagreement between K’s parents and doctors

The parents and the medical team were unable to reach agreement on the treatment regime. By March 2016 K’s disease had progressed. K's doctors estimated if treatment were given K would have a 50 to 60 percent chance of survival 5 years post-surgery. K’s parents continued to oppose treatment, and as a result the hospital applied to the Family Court for a determination. In March 2016 the Court ordered that K receive chemotherapy, despite K’s parents’ objections.

The chemotherapy was partially successful, but not sufficient to cure him. At a further court hearing in May 2016 the parents and medical team both agreed to continued chemotherapy. Radiotherapy, though recommended by K's doctors, was not ordered at either court hearing due to the parents’ concern that the treatment posed significant risks to K.

K's condition later deteriorated and in August 2016 the medical team sought orders from the Court to commence both chemotherapy and radiotherapy treatment, which they believed would give K with the best chance of cure. His parents continued to object to radiotherapy, arguing that K’s quality of life should be prioritised over curative treatment with a low chance of success and severe side effects.

The Court agreed with K's parents and decided that receiving palliative care rather than treatment was in K’s best interests. In making this decision, the Court gave considerable weight to K’s parent’s views, K's deteriorating health, the possible side effects of the proposed treatment, the medical evidence, and the now greatly reduced chance of a cure due to the delay in commencing curative treatment.

X v The Sydney Children’s Hospitals Network [2013] NSWCA 320

X was aged 17 years 8 months and suffering Hodgkin’s disease when he appealed a Court order authorising the administration of a blood transfusion.

X had previously refused a transfusion because he was a Jehovah’s Witness. He had received several courses of low-dose chemotherapy (consented to by his parents) to avoid the need for a blood transfusion. When the matter was heard by the Court, he was severely anaemic and there was concern that once he restarted chemotherapy the anaemia would worsen and cause death. X had threatened to remove the intravenous tube if blood was administered in an emergency. X’s parents were also Jehovah’s Witnesses and supported his decision.

The Court agreed that while X was a highly intelligent and mature minor, providing treatment was in X’s best interests. The Court authorised the hospital to carry out the treatment.

TS & DS v Sydney Children’s Hospital Network (Mohammed’s case) [2012] NSWSC 1609

Mohammed was admitted to hospital aged two and a half months after suffering breathing difficulties. He had elevated blood lactate levels (consistent with a metabolic disorder), daily seizures, profound developmental delay, severe reflux and was deaf and almost blind.

Mohammed’s clinicians believed he had a fatal metabolic disorder and only weeks or months left to live. They did not consider treatment to be in his best interests, and wanted to provide palliative care. Mohammed’s parents applied to the Court when he was 9 months old for an order that he be treated by mechanical ventilation. The question for the Court was whether that treatment was in Mohammed’s best interests.

The Court decided that the risks of ventilation outweighed the benefits. Mohammed would be required to be sedated, have a catheter inserted (subjecting him to pain and discomfort) and be suctioned regularly. He was also at risk of suffering an airway injury through the ventilator. Placing him on a ventilator would not improve his underlying condition, his seizures, sight or hearing.

Given Mohammed’s short life expectancy and that a ventilator would provide only temporary benefit, the Court decided he should not be subjected to pain and discomfort for the remainder of his life, and that ventilation was not in his best interests. The Court did not grant the order sought by Mohammed’s parents.

Re Baby D (No 2) (2011) FamCA 176

Baby D was born prematurely and was 5 months old at the time of the Court proceedings. She developed an upper airway obstruction due to swelling of her larynx and was intubated with an endotracheal tube to relieve her airway obstruction. During an attempt to remove the tube Baby D suffered severe brain damage. The endotracheal tube was reinserted and she remained intubated.

It was unknown what would happen if the tube was removed again. Her clinicians thought her airway would become obstructed, leaving her in distress. The only way to alleviate distress would be to administer analgesia and sedate her, as part of a palliative approach. This would suppress her ability to breathe and may hasten her death. Baby D’s parents, supported by the hospital, sought the Court’s approval to consent to the removal of the tube and provide palliative care if required.

Though the Court agreed the tube should be removed and palliative care provided, it also stated that, in Baby D’s case, the decision to withdraw treatment was within the scope of parental power and did not require court authorisation. The Judge commented that the courts are reluctant to interfere with these decisions, and that 'law should tread lightly in seeking to intrude or impose itself upon these extremely difficult decisions.' However, he also cautioned that ‘…other similar medical procedures within a different factual context may require court authorisation’.

Minister for Health v AS (2004) 33 Fam LR 223

AS was a 15-year-old boy who suffered from life-threatening atypical Burkitt’s lymphoma. The boy needed chemotherapy or he would die. However, the chemotherapy had potentially fatal side-effects which would likely require treatment with blood transfusions. AS refused consent to the transfusions due to his Jehovah’s Witness beliefs. His parents, also Jehovah’s Witnesses, left the decision to be made by AS. Chemotherapy, to which AS consented, was commenced, and the hospital sought a declaration overriding AS's refusal of the blood transfusions.

The Court decided that AS was Gillick-competent, but still granted the application. The Court remarked that the welfare of the child is paramount, that ‘welfare’ included the child’s physical well-being, and if that child will die without life-saving treatment which has good prospects of a long-term cure it is unquestionably in the child’s best interests to receive that treatment. It also found that parents’ wishes, through relevant, are not determinative. Further, if the child is Gillick-competent and refuses the treatment, this is relevant and important but does not prevent the court from authorising medical treatment where the best interests of the child require it.

Re Heather [2003] NSWSC 532

Heather was an 11-year-old girl with a malignant ovarian tumour. Following surgery to remove part of the tumour, chemotherapy was recommended, with an 85% prospect of cure. Heather’s parents were reluctant for chemotherapy to be undertaken and sought alternative treatment methods.

Heather underwent an alternative treatment regime but, after approximately four months, medical opinion was that chemotherapy needed to commence within a week, or Heather might die. As Heather’s parents remained reluctant to consent to chemotherapy an urgent application was made by the Department of Child Safety. The Court ordered that Heather present to hospital, where it was discovered the tumour had tripled in size in the previous three weeks.

At a subsequent hearing the Court decided that further inaction would likely result in Heather’s death, and that the ‘extreme urgency’ of her condition justified an order permitting chemotherapy. The majority of the medical evidence clearly indicated that chemotherapy was in Heather’s best interests.

State of Queensland v Nolan [2001] QSC 174

The issue in this case was whether it would be in the best interests of conjoined twins to be separated, where one (Twin B) was near death. If they remained conjoined, it was highly likely that when Twin B died Twin A would also die, but if separated Twin A would have a 60 to 80 percent chance of survival. Though the parents consented to the separation, the hospital sought declarations about the lawfulness of the operation, given it would result in the death of Twin B. The court found that it was in the best interests of Twin A to authorise the procedure. Though the right to life of both twins was equal and the operation would benefit only Twin A, Twin B would not suffer a corresponding detriment because her capacity to live was already fatally compromised. Continuance of the life of Twin B, were the surgery not performed, would confer no additional benefit.

Publications

• Lindy Willmott, Ben White and Neera Bhatia, 'When is it in a child’s best interests to withhold or withdraw life-sustaining treatment? An evolving Australian jurisprudence' (2018) 25(4) Journal of Law and Medicine 944.
• Eliana Close, Lindy Willmott and Ben White, 'Charlie Gard: in defence of the law' (2018) 44 Journal of Medical Ethics 476.

Other resources

• Paediatric Palliative Care Australia and New Zealand, A practical guide to palliative care in paediatrics. (4th ed, 2023).
• The Paediatrics & Child Health Division of The Royal Australasian College of Physicians, Policy on Decision-Making at the End of Life in Infants, Children and Adolescents. (Policy, 2008).
• The Royal Children’s Hospital Melbourne, Thinking Ahead: Planning care for children with life-limiting conditions. (Policy, undated).
• Queensland Health, End-of-life care: Decision-making for withholding and withdrawing life-sustaining measures from patients under the age of 18 years: Part 1: Legal Framework, Clinical Considerations and Decision-Making Framework. (Guide, Part 1, 2017).
• Queensland Health, End-of-life care: Decision-making for withholding and withdrawing life-sustaining measures from patients under the age of 18 years: Part 2: Legal Framework, Clinical Considerations and Decision-Making Framework. (Guide, Part 2, 2017).
• Victoria State Government, BetterHealth Channel, End of life and palliative care for children, teenagers and young adults.