In a recently publicised case, twins, Hope and Faith, were born in Sydney with diprosopus. The twins shared one body and head, but had their own face and brain. Their parents had continued with the pregnancy against medical advice. None of the previously documented cases of diprosopus had survived long after birth and doctors warned that the twins would face difficulties with simple tasks such as breathing unassisted. Sadly, the twins passed away three weeks after birth.
The case highlights the difficulties which arise when medical experts and parents disagree over medical intervention with respect to children. These difficulties are even more complex if the decision will affect an unborn child or a minor who is incapable of consent.
For most adults the ability to consent to, or refuse, medical treatment is assumed as of right. However, issues of consent are much more problematic for child patients. This article will explore consent issues and the changing role of the child, the parent or guardian, and medical practitioners.
Consent: foetuses and pregnant women
It is well established at common law that a foetus has no legal personality and no separate existence from its mother.1 This means that consent for medical treatment of a foetus is mediated through the mother.2 Both legal and ethical issues can arise when pregnant women refuse treatment necessary for the survival of a foetus. Essentially, doctors and courts are faced with a conflict between the interest of the mother to self-determination and bodily integrity, and the interest of the foetus in being born.
In cases where the woman concerned was held to be competent, English courts have emphasised the woman’s right to refuse treatment even where the decision will lead to the death of the foetus or to her own death. The courts have held that the right to choose must be honoured, even where it seems irrational.3
The most common cases before the court involve applications by hospitals to perform emergency caesarean sections to save the life of a foetus in circumstances where the woman refused consent. Most of the orders made enforcing the caesarean sections were made on the basis that the women lacked capacity.
Re L4 and Re MB5 both concerned situations where the pregnant woman refused to undergo a caesarean on account of a needle phobia. In both cases the court held that the woman lacked capacity as the needle phobia rendered her temporarily incompetent. The court noted that a person of otherwise sound mind can have capacity temporarily eroded on account of factors such as panic and fear.
Whilst the court has jurisdiction to hear cases concerning children after birth, the court has no jurisdiction with regard to unborn children. This was reinforced in the decision of Re F (In Utero)6 where the English Court of Appeal refused an application to declare the unborn child of a mentally ill pregnant woman, a ward of the state. The Court held that the foetus had no existence separate to its mother, and that to make such orders would be to unlawfully control the mother. Similarly, the Canadian Supreme Court in Winnipeg Child and Services (Northwest Area) v G7 refused to detain a woman whose addiction to glue sniffing while pregnant would inevitably result in the birth of a severely disabled child.
There have been no equivalent cases in Australia, however, in the leading High Court case on ‘wrongful life,’ Harriton v Stephens8, Justice Crennan noted that in fulfilling his/her duty of care to a mother, a doctor does not need to weigh the interest of the foetus with the interest of the mother. By the same token, a woman is entitled to continue her pregnancy despite risks identified by her doctor.
Parents’ capacity to refuse lifesaving treatment of minors
When an infant is born, it obtains legal personality. However, until the child either reaches the legislative ‘age of consent’, or obtains Gillick competence9, consent to medical procedures must be obtained from the child’s parents.
While the common law affirms the right of a competent adult to refuse life-saving treatment, the position varies when parents refuse treatment on behalf of their children contrary to the advice of medical practitioners. While ordinarily parents have capacity to give consent on behalf of their children, this may be overruled by the court. In exercising its jurisdiction, the court has regard to the opinion of both the parents and medical practitioners, but its fundamental consideration is the wellbeing, welfare or interest of the child.
This occurred in a recent South Australian case10 where the doctors of a three year old suffering from leukaemia sought an order enabling them to provide the child with blood transfusions, despite the parents’ refusal on account of religious reasons.
Mature minors’ capacity to refuse lifesaving treatment
The capacity to consent to medical treatment which in some cases is conferred on parents and minors by statute, is subject to the courts’ jurisdiction. If a minor refuses life-saving treatment, a hospital may apply to the court for an order that the minor undertake the recommended medical treatment.
The limits on this jurisdiction have been explored recently by the NSW Court of Appeal in a case involving a 17 year old Jehovah’s Witness with Hodgkin’s disease.11 The boy and his parents would not consent to the treatment of his condition with blood transfusions. The transfusions were necessary to enable a course of chemotherapy to treat the disease. With such treatment, the boy had a 40% to 50% chance of cure. Without treatment, the evidence was that he would die of cancer.
At first instance, the NSW Supreme Court held that, despite X being a “mature child of high intelligence” and the fact that he could voluntarily stop the treatment on reaching adulthood in ten months’ time, it was in X’s best interests to have the treatment.
The trial judge recognised the importance of X’s faith, and the religious ramifications of a blood transfusion, however, ultimately held that in determining X’s best interests, “the sanctity of life in the end is a more powerful reason for me to make the orders than is respect for the dignity of the individual”.
The decision was upheld on appeal, notwithstanding the fact that by the time the appeal was heard, X was only 4 months from his 18th birthday.
These decisions reaffirm that when treating minors, the wishes of the child (and their parents) will not be conclusive and the paramount consideration is still the child’s best interests. It may be necessary to seek a ruling from a court to proceed with life-saving treatment when minors and their parents refuse to provide their consent.
Anna Gudkov and James Martin