End of life decision-making for infants, young children and adolescent 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 infants, young children and adolescents. 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.
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 an adolescent 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 are needed.
In most Australian States and Territories a child will be considered an adult upon reaching the age of 18, and can make their own treatment decisions, provided they have capacity. In South Australia, a child who is 16 years of age (and, in some case, under 16) can also consent to treatment.
Infants, young children and decision-making about medical treatment at the end of life
How are decisions about medical treatment for infants and young children made?
Medical decisions for infants and younger children are ordinarily made by the child’s parents. 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.
Medical treatment will generally only be withheld or withdrawn where the child’s health professionals believe that 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.
How are a child's best interests determined?
In Secretary, Department of Health and Community Services (NT) v JWB and SMB (Marion’s case) the High Court decided that a child’s ‘best interests’ are to be determined subjectively by the parents, and that the overriding consideration for a parent must be what is best for the welfare of the child.
This criteria is easy to apply for simple medical procedures, for example, consenting to a child having stiches for a wound. However, in complex situations, such as deciding whether to withhold or withdraw life-sustaining treatment from a child at the end of life, there is little legal guidance on the factors parents should consider when determining a child’s best interests, and the law on this issue remains uncertain.
Despite this, the courts have commented (in cases involving sterilisation of a child, and childhood gender dysphoria) on the types of factors likely to be relevant when a court assesses a child’s best interests. These factors (from the case Re Marion (No 2) have been used by courts involved in making end of life medical decisions for children, and include:
- the child’s condition requiring the procedure or treatment;
- the nature of the proposed treatment or procedure;
- the reasons why it is proposed the procedure or treatment be carried out;
- the alternative courses of treatment available;
- the desirability and effect of authorising the treatment, rather than the available alternatives;
- the physical effects, and the psychological and social implications for the child of authorising or not authorising the treatment;
- the nature and degree of any risk to the child of authorising or not authorising the treatment; and
- the views about the treatment expressed by the child’s guardians, a person entitled to the custody of the child, a person responsible for the daily care and control of the child, and the child.
From recent cases, it seems the most significant factor in the courts’ decision-making about best interests is the medical evidence presented to the court, and, in most cases, the courts have made decisions in accordance with that evidence. Some other matters courts have often taken into account when considering a child’s best interests include the following:
- Where there is a clear chance of a long standing cure for a child, treatment that results in that outcome will, in most cases, be considered by the courts to be in the child’s best interests.
- Although ‘best interests’ include considering the wishes of the key parties (the child, the parents and the treating medical team) and the child’s wishes are relevant, they are not definitive, and the extent to which they are considered and the weight they are given depend on the child’s age and maturity.
- The courts will carefully consider the views and wishes expressed by parents about their child’s best interests, but are not bound to follow the parents’ views.
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 recent cases involving parental decision-making for infants at the end of life, see Re Baby D and Mohammed’s case.
What happens if a parent refuses life-sustaining treatment for newborns and infants?
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.
In cases where refusing life-sustaining treatment is contrary to medical advice, it is unlikely to be in a child’s best interests to refuse that treatment and therefore parents will not have power to do so. If the treatment involved is straightforward, is likely to succeed, and is recommended by health professionals, then a court could override parental refusal of treatment and order the treatment be given.
Adolescent children: Decision-making about medical treatment at the end of life
The right of a parent to consent to medical treatment is not absolute and may change over time as a child becomes an adolescent capable of making their own decisions. The following section discusses when adolescents 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 an adolescent child make their own decisions about medical treatment?
Adolescent children may have the capacity to make their own medical treatment and health care decisions, including decisions to withhold or withdraw life-sustaining medical treatment, if they are considered ‘Gillick-competent’.
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 an adolescent child does is not Gillick-competent (i.e. they do not understand, or have the maturity to understand the treatment proposed) 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 implemented in legislation a 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, a child aged 16 or over has the legal right to make decisions about his or her own medical treatment, 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).
Who decides whether an adolescent child is Gillick-competent, and how do they decide?
Whether or not a child is Gillick-competent is a decision made initially by the child’s health professionals. If however the case comes before the Supreme or Family Court, the court will determine whether the child is Gillick-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 is no established criteria to guide a health professional 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:
- age of the child;
- the child’s psychiatric, psychological and emotional state;
- his or her understanding of the nature and consequences of the illness, and of the proposed treatment, both short-term and long-term, physical and emotional;
- the child’s maturity, including intellect and life experience;
- medical opinion about the child’s capacity; and
- the child’s ability to understand wider consequences of the decision, including the effect on other people, and moral and family issues.
Can a Gillick-competent child refuse life-sustaining medical treatment?
Yes. A child who is Gillick-competent is able to refuse life-sustaining medical treatment.
When will a Gillick-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 (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 The Sydney Children’s Hospital Network v X 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 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
Who provides consent to emergency treatment for a child?
In Australia emergency medical treatment can generally be provided to children without consent. 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 from State to State, 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.
In South Australia, if a parent or guardian refuses medical treatment for their child in an emergency situation, then a health professional may administer the treatment despite the refusal, if it is in the child’s best interests.
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.
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.
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 at 27 weeks and was 5 months old at the time of the court proceedings. Baby D developed an upper airway obstruction due to swelling of her larynx and had an endotracheal tube inserted to allow her to breathe. During an attempt to remove the tube Baby D suffered major brain damage. However, her organ system still functioned and she was able to breathe.
It was unknown what would happen if the tube was removed again. Her health professionals thought her airway would become obstructed, leaving her in a state of distress. The only way to alleviate the distress would be to administer palliative care, which would suppress her ability to breathe and result in her death.
Baby D’s parents were supported by the hospital and its clinical ethics committee and sought an order from the court that the parents could consent to the removal of the tube and the offer of palliative care.
Justice Young accepted the extensive medical evidence and found this decision was within the scope of parental responsibility. The removal of the tube was considered, medically, to be a routine medical procedure and was for the treatment of a bodily malfunction or disease (the obstruction of Baby D’s airway). In arriving at his decision, he noted the Court is reluctant to interfere with these decisions, and stated the 'law should tread lightly in seeking to intrude or impose itself upon these extremely difficult decisions.'
Re Heather  NSWSC 532
The parents of ‘Heather’, an 11 year old girl with a malignant ovary tumor, refused consent for their daughter to undergo chemotherapy. The parents wished to explore alternative methods to treat her cancer, however Heather’s health professionals believed that failing to commence chemotherapy could jeopardise the child’s life.
The Court granted the Department of Community Services power to authorise chemotherapy and other procedures that were, on medical advice, in the child’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
A dispute arose between the parents of Mohammed, a 9 month old, and health professionals. Mohammed had been admitted to hospital at 2 and a half months after suffering breathing difficulties. He had elevated blood lactate levels, daily seizures, profound developmental delay, severe reflux and was effectively blind and deaf. There was no diagnosis of his condition but health professionals considered he had a fatal metabolic disorder and that he had only weeks or months left to live.
Mohammed’s health professionals did not think it was in his best interests to provide treatment, and wished to provide palliative care to alleviate the baby’s pain and suffering. Mohammed’s parents applied to the court for an order that he be treated by mechanical ventilation. The question for the Supreme Court was whether it was in Mohammed’s best interests to be provided mechanical ventilation.
The court determined the risks of ventilation outweighed the benefits to Mohammed. He 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, having an obstruction or dislodgement of the ventilator tube, or suffering from pneumothorax, chest infection or pneumonia. Placing him on a ventilator would also not improve his seizures, sight, hearing or the metabolic disorder.
Given Mohammed’s short life expectancy and that a ventilator would provide only temporary benefit, the court stated 'he should not be subjected to pain and discomfort for the remainder of his life'. The court also suggested that courts should not be used to compel doctors to do something they regard as contrary to their patient’s best interests.
For more information about children and decision-making at the end of life, see the following resources:
- 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.
- The Royal Children’s Hospital Melbourne Caring Decisions: A handbook for parents facing end-of-life decisions for their child.