End of Life Decision Making: Minors
(Children & Young People)

Consent

Young girl green background
Sometimes children are born with, or diagnosed in youth, with serious health complications, illness or disease. Childhood and youth are also times during which accidents often happen. Sometimes, such illness, disease or accidents, may place a child or young person near or at the end of their life. Who may consent to or refuse health care procedures and treatment, and when, in such circumstances, is very important.

In brief, it was explained in the section on consent for minors that:

  • generally a child’s parents (or appointed guardians) are the main source of authority for decisions about health care procedures and treatment;
  • if a child is mature enough to show sufficient understanding and intelligence in relation to health care procedures and treatment, he or she will be able to make certain decisions for him or herself (often referred to as ‘Gillick competence’);
  • the Court has an overarching role in ensuring decisions are made in the ‘best interests‘ of the child. It may exercise its parens patrie or welfare jurisdiction to ensure this is the case. The Court also must decide about any ‘special medical procedure’ proposed for a child or young person.

What ‘best interests’ means, as well as issues concerning the refusal of treatment were also covered in relation to general treatment, and briefly in relation to matters that might place a child’s life at risk, or result in death to the child, as this would not be seen to be in the best interests of the child.

These issues are further discussed below in relation to the withholding or withdrawal of treatment at the end stages of life for minors.

For more information and details concerning consent to health care procedures and treatment for minors at all stages of their young lives, please see here:

Consent – Minors

Decisions about the withholding or withdrawal of treatment

Holding small hand - end of life

Children lacking competence and capacity

When does a child lack competence or decision making capacity?

Many children will not have the competence or capacity to participate in health care decision making because they are too young, or too sick.

However as children age and/or display certain levels of comprehension and capacity, an assessment of whether they are ‘Gillick competent’ will involve determining whether they have sufficient maturity, understanding and intelligence in relation to the proposed procedure/treatment. (See further discussion here, and below).

Who can make a decision to withhold or withdraw treatment from children lacking competence?

It was seen above that in Australia, when a child is not legally competent to consent to or refuse medical treatment, parents generally have the power to make such decisions on the child’s behalf. 1 This is true also in the case of decisions concerning the withholding and withdrawal of treatment.

However, in practice such decisions are most often made in consultation with medical professionals, who may provide guidance and information that may help determine the best interests of the child.

Court involvement is not necessary, unless certain issues arise (discussed below) – noting Young J’s comment in Re Baby D (No 2), that

‘the law should tread very lightly in seeking to intrude in, or impose itself upon, those decisions. It would …be sad indeed if the courtroom was to replace a caring, holistic environment within which approach by parents and doctors alike could deal with (admittedly extremely difficult) medical and other decisions that need to be made.’ 2

In Re Baby D, the judge agreed that parents could authorise the removal of a breathing tube and the administering of such sedation or other medication as is necessary and proper to provide palliative care to the infant, on best interests grounds, and that such authorisation could be made without judicial review.

If the withholding or withdrawal of treatment is therefore considered to be in the best interests of a child, parents may lawfully refuse treatment, and the child will be given palliative care.

When can a decision to withhold or withdraw treatment from children lacking competence be made?

If the withholding or withdrawal of treatment is considered to be in the best interests of a child, parents may lawfully refuse treatment, and the child will be given palliative care.

When will Court involvement be necessary?

Any person who is concerned about the child’s welfare may apply for a Court to decide what is in the ‘best interest of the child’. 3

For example, parental power to refuse medical treatment for a child is not unlimited. If there is a question concerning whether the parent’s decision to withhold or withdraw treatment is in the best interests of the child, the parents’ decision is revisable by the courts.

Similarly parents may apply to the Court if they believe that health practitioners are not acting in the best interests of the child.

See for examples ‘Mohammed’s Case‘; 4 and Re Natalie. 5

In Mohammed’s Case parents disagreed with doctors over the mechanical ventilation of their child. The parents applied to the Court to argue for such ventilation. The Court held that it was not in Mohammed’s best interests to be mechanically ventilated as the risks outweighed the benefits.

In Re Natalie, doctors applied to the Court to clarify whether the instructions given by her caregiver not to resuscitate Natalie if she suffered a cardiac arrest or respiratory arrest or other life-threatening event were lawful and in Natalie’s best interests. Natalie was a severely disabled 11 year old girl. The Court confirmed that the withholding of treatment in such circumstances would be lawful, and in Natalie’s best interests.

Child - end of life

Children who have competence and capacity

Can a mature child refuse life-sustaining treatment?

In Australia, while a Gillick-competent child is likely able to refuse health care treatment provided it is in his or her best interests to do so, the Court may overrule a refusal that would have grave consequences, place a child’s life at risk, or result in death to the child, on the basis that such refusal would not be in the best interests of the child.

For example see X v The Sydney Children’s Hospitals Network 6 in which a teenage boy close to the age of 18 refused a blood transfusion on religious grounds. The Court held that its jurisdiction is not restricted by the principles of Gillick, and that in the circumstances it was not in the best interests of the boy to refuse treatment (as there was 80% chance of death if blood products were not given during his treatment for cancer). His closeness in age to 18 did not alter that decision.

Note: In all of the Australian jurisdictions there is legislation authorising the administration of blood transfusions to children without consent where the child is ‘likely to die’ without the transfusion. 7

Beyond the Law: Seeking children’s views

Note the above outlines the position at law about who can legally make decisions about treatment for children and young people.

It is important to remember that this does not mean that a child, young person or adolescent should not be consulted, or that their condition and options for treatment should not be discussed with them.

The Paediatrics & Child Health Division of The Royal Australasian College of Physicians position statement on Decision-Making at the End of Life in Infants, Children and Adolescents notes:

A child’s ability to participate in decision-making is dependent on their willingness and competency, but lack of competency should not preclude their views being heard or stop them from being able to make some simple choices regarding their care including the planning of their funeral. This allows the child a degree of control and permits them to feel a part of decision-making rather than feeling disempowered or alienated. The competent adolescent should always be included in discussions about their care, unless they expressly request not to be. 8

Bear - end of life

Find out more

falling leaves
Consent – Minors

Notes:

  1. The three main sources of such parental power recognised by the High Court are the common law, State or Territory legislation, and the Family Law Act 1975 (Cth); Secretary, Department of Health & Community Services (NT) v JWB and SMB (Marion’s Case) (1992) 175 CLR 218.
  2. Re Baby D (No 2) [2011] FC 176 at 195; (2011) 45 Fam LR 313.
  3. Secretary, Department of Health & Community Services (NT) v JWB and SMB (Marion’s Case) (1992) 175 CLR 218. The Family Court of Australia has jurisdiction to make orders ‘relating to the welfare of children): Family Law Act 1975 (Cth), s67ZC; or the State Supreme Court (exercising their parens patriae jurisdiction) may make such decisions. In some states, legislation also gives the Children’s Court jurisdiction where it appears that a child is ‘in need of protection,’ including cases where ‘the child’s physical development or health has been, or is likely to be, significantly harmed and the child’s parents have not … arranged or allowed the provision of, … effective medical, surgical or other remedial care’ or there has been a failure to provide ‘adequate and proper … medical aid’: See for example Children and Young Persons Act 1989 (Vic), s63(f) and Children and Young persons (Care and Protection) Act 1998 (NSW), s228.
  4. TS & DS v Sydney Children’s Hospital Network (“Mohammed’s case”) [2012] NSWSC 1609.
  5. Re Natalie [2012] NSWSC 1109.
  6. X v The Sydney Children’s Hospitals Network [2013] NSWCA 320.
  7. Children and Young Persons (Care and Protection) Act 1998 (NSW) s174, the Human Tissue Act 1982 (Vic) s24, the Consent to Medical Treatment and Palliative Care Act 1995 (SA) s13(5), the Human Tissue and Transplant Act 1982 (WA) s21, the Transplantation and Anatomy Act 1979 (Qld) s20, Transplantation and Anatomy Act 1978 (ACT) s23, Human Tissue Act 1985 (Tas) s21.
  8. The Royal Australian College of Physicians Paediatrics & Health Division, Decision Making at the End of Life in Infants, Children and Adolescents (2008) p18, available at https://www.racp.edu.au/page/paed-policy.