Court rules on 17-year-old’s capacity to refuse lifesaving treatment

Key messages from the case

Children under 18 (under 16 in South Australia) may be able to make decisions about their own medical treatment if they are mature enough to understand fully the proposed treatment and its long-term implications. However, this can be a highly nuanced assessment and doctors may find they need to approach the court for a decision.

Courts have the power (called the parens patriae jurisdiction) to make orders for a child’s care and protection where a court decides those orders are in the child’s best interests. The power is exercised cautiously and in exceptional circumstances. For doctors, the need to approach the court for orders like this will usually only arise in hospital settings.

Details of the decision

AC was diagnosed with Ewing sarcoma at age 16 and admitted for urgent treatment at a hospital, away from their home. AC was commenced on a protocol of 17 cycles of chemotherapy.

AC responded well to the initial treatment. After the first 4 cycles, no tumours were detectable on MRI or PET scans. However there were still abnormal areas of tissue and it was considered that the tumour had not been completely destroyed.

Doctors advised AC and their parents of the opinion that:

• the cancer was still present
• with treatment AC had a 50% chance the cancer would be destroyed
• without further treatment it would almost certainly regrow within a few years at most
• at that point it would likely be resistant to further treatment and AC would almost certainly die.

The doctors recommended AC continue treatment including a further 10-13 cycles of chemotherapy plus radiotherapy.

Children and consent

AC declined further treatment. AC was a devout Christian and believed they had been miraculously cured.

AC’s parents supported the decision.

AC’s doctors agreed that AC was a mature and intelligent young person and was able to understand and process the medical information. However, in light of their age and the life-altering nature of the decision, the hospital applied to the court for:

• a declaration that AC had the capacity to refuse treatment, or
• if AC did not have capacity, a declaration that hospital staff could lawfully carry out the recommended treatment.

Outcome

The court accepted AC was ‘Gillick competent’ based on medical and psychological evidence. They were sufficiently mature to make decisions about their treatment, including a decision to refuse medical treatment.

However, the court had the power to make a decision in the child’s best interests.

Bodily integrity and autonomy were important principles, as was respect of a person’s religious beliefs. The court noted it should be cautious in overriding the decision of a competent person. However, the court further noted that it could authorise treatment in AC’s best interests, even if it found AC had sufficient capacity.

The court concluded that AC’s belief they had been cured was contrary to all medical evidence. In evidence in court, AC agreed they would probably regret the decision if the cancer did come back. However, AC would accept it as God’s will and would have eternal life in heaven. AC also gave evidence that if the cancer returned, they would most likely seek further treatment and would undertake treatment if the court ordered it.

The court acknowledged that further chemotherapy would have significant physical, emotional and social effects. Even if the cancer were cured, AC could expect ongoing effects of the treatment, including potential infertility. The court also weighed the effect on AC of undergoing treatment against their will.

While AC accepted that ‘being in court against’ the doctors may have affected the therapeutic relationship, there was no evidence of antipathy and the court was confident the treating relationship could continue.

On balance, the court ordered that hospital staff may lawfully carry out the recommended medical treatments on AC.

Key lessons

Even where a court considers a child to have capacity to make decisions about their treatment, the court can make orders that further treatment be provided in the child’s best interests.

The court will only make such orders in exceptional circumstances and after carefully and cautiously considering all the evidence, including the long term and short term implications for the patient, the risks of the proposed treatment, and considerations about the sanctity of life and patient autonomy.  

References and further reading

Avant factsheet – Children and consent