End of life decision-making for infants, young children and older children can be a very challenging and emotional experience for the child, parents, families and health professionals. Often questions over whether to withhold or withdraw life-sustaining treatment can arise at the very beginning of an infant’s life, such as for extremely premature neonates, or infants with severe congenital conditions. Younger and older children may also suffer from health conditions or traumatic incidents which result in decisions about life-sustaining treatment.
This webpage discusses the law relating to withholding and withdrawing life-sustaining treatment from children. It also explains the Supreme Court and Family Court of Australia’s powers in relation to decision-making for children.
Children and medical treatment
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’s parent or guardian, the child, or a court.
In Victoria, a child under 18 is also able to make decisions about medical treatment in an Advance Care Directive. Victoria is the only Australian State which permits this. For further information, visit our webpage about Advance Directives (Victoria).
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 ‘Gillick-competent', meaning the child has sufficient understanding and intelligence to understand the treatment proposed, he or she can lawfully make decisions about medical treatment, and can provide valid consent.
The Supreme Court and the Family Court have jurisdiction to hear cases relating to medical treatment for children at the end of life, 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.
The only situations in which consent to treatment for a child is not required from a parent, the child or a court are where emergency treatment or a blood transfusion is needed, or to withhold or withdraw futile or non-beneficial treatment.
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.
Parental decision-making about end of life treatment for children
What end of life treatment decisions can parents make?
Generally, a child’s parents (or legal guardian) can make 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. 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.
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, or to provide emergency treatment.
What factors are considered when making a decision about life-sustaining treatment for a child?
The paramount consideration for parents and courts when making decisions to withhold or withdraw life-sustaining treatment is the child’s best interests.
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 recent cases about infants see Re Baby D (No 2) and Mohammed’s case.
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 is likely to include decisions about whether or not to have life-saving treatment. However this has not been settled by Australian courts, though Australia is likely to follow the United Kingdom’s position where it is clear that such decisions can be made by parents without court authorisation, so long as it is in the child’s best interests.
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.
Decision-making about end of life treatment by competent children
The right of a parent to consent to medical treatment is not absolute and may change over time as a child matures and becomes capable of making their own decisions. The following section discusses when children may be ‘Gillick-competent’, that is, able to make decisions about their own medical treatment, including life-sustaining treatment at the end of life.
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 is the only Australian jurisdiction that has a legislative provision similar to the concept of Gillick-competence. 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.
In South Australia, the law also permits a child over 16 years of age 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 in these circumstances (on the basis of it not being in the child’s best interests).
In Victoria a child under 18 who has decision-making capacity is able to make decisions about life-sustaining treatment in a valid Advance Care Directive.
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 clinicians. However, where there is disagreement e.g. between clinicians and a child, a court may decide if a child is competent.
In order 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 clinician 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.
Can a competent child refuse life-sustaining medical treatment?
Yes. A child who is Gillick-competent is able to refuse life-sustaining medical treatment.
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). 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 definitively settled by the courts.
Consent for emergency treatment and blood transfusions for children
Can emergency treatment be provided to children without consent?
Australian law recognises the ‘emergency principle’. It allows treatment to be provided if obtaining consent is not possible and there is an urgent need for treatment e.g. when a person’s life is in danger. The emergency principle therefore allows clinicians to provide emergency medical treatment to a child without consent if there is an urgent need for treatment e.g. where the child’s life is in danger.
The Northern Territory, New South Wales and South Australia are the only Australian States and Territories which have specific laws allowing emergency medical 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.
The law is different 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 emergency treatment may be administered despite the refusal if it is in the best interests of the child.
In emergency situations, a clinician can lawfully withhold or withdraw futile or non-beneficial treatment without consent.
Who provides consent to blood transfusions for a child?
The laws dealing with emergency medical treatment generally enable blood transfusions to be given to children without the parent or child’s consent in emergency situations.
In non-emergency situations the law generally enables blood transfusions to be given to children with the consent of a person legally entitled to provide it (for example, a parent).
However, the law in the Australian Capital Territory (ACT), Queensland, Tasmania, Victoria and Western Australia allows blood transfusions to be given to children under 18 years even where a parent or child refuses consent to that procedure, as well as in emergency situations.
There is an additional requirement in the ACT, Tasmania, Western Australia, and Victoria that health professionals must believe the child is in danger of dying without the blood transfusion, and in Queensland there is a requirement that a transfusion must be necessary to preserve the life of the child.
Children and withholding or withdrawing futile or non-beneficial treatment
‘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 treatment that is futile or non-beneficial.
For further information about the law relating to futile or non-beneficial treatment visit the Adults Stopping Treatment page.
Complaints and dispute resolution
Where a child patient, their family or carer (in the public healthcare system) wishes to raise concerns that a child patient's health condition is getting worse or not improving as expected while the patient is in hospital or receiving care, they may invoke Ryan's Rule in Queensland, or an equivalent rule in some other Australian jurisdictions. This rule provides a three-step process to address these issues. For example, in Queensland the process involves:
1. Talking to a nurse or doctor about the concerns.
2. If the response is not satisfactory, talking to the nurse in charge of the shift.
3. If the response is not satisfactory, phoning 13 HEALTH (13 43 25 84) (or ask a nurse to call on your behalf) to request a Ryan's Rule Clinical Review. This will enable a nurse or doctor to review the patient and assist.
Similar review processes to Ryan's Rule also exist in public hospitals in New South Wales, and at the Canberra Hospital in the ACT. For further information visit the complaints and dispute resolution sections on our New South Wales and ACT Stopping Treatment webpages. For other jurisdictions, see The Australian Charter of Healthcare Rights or contact the health department in your State or Territory.
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
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 almost certainly 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 the child’s refusal of the blood transfusions.
The Court decided that AS was Gillick-competent, but still granted the application. They 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 a good prospect 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 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’.
Re Heather  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  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.
TS & DS v Sydney Children’s Hospital Network (Mohammed’s case)  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.
X v The Sydney Children’s Hospitals Network  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.
For more information about children and decision-making at the end of life, see the following resources:
- Willmott, Lindy, White, Ben, and Bhatia, Neera, 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 944-972.
- Close, Eliana, Willmott, Lindy, & White, Ben, Charlie Gard: in defence of the law (2018) 44 Journal of Medical Ethics 476-480.
- 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. Sydney, RACP: 2008.
- The Royal Children’s Hospital Melbourne, Thinking Ahead: Planning care for children with life-limiting conditions. Melbourne, RCP: 2018.
- Children’s Health Queensland Hospital and Health Service, A practical guide to palliative care in paediatrics. Brisbane, Children’s Health Queensland Hospital and Health Service: 2014.
- 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. 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. 2017.