The story of Hannah Jones - the 13-year-old girl from the UK who recently refused to undergo a heart transplantation procedure - has attracted significant media attention and some amount of criticism. Hannah was diagnosed with leukaemia at age four and the chemotherapy administered to treat the disease caused her heart to weaken. Without a transplant, doctors predict that she is likely to die within six months.

However, even if the heart transplant was performed, the medication aimed at preventing Hannah's body rejecting the new heart could cause her leukaemia to return and she may need another transplant within a number of years. There has been a mixed response to the decision of the healthcare team, who almost followed through with legal action to try and force Hannah to undergo the procedure.

Hannah's decision is described by some reporters as giving terminally ill teens a "right to die". This raises significant questions in relation to the types of medical treatments minors are able to consent to, and whether the law permits them to refuse treatment where refusal will lead to death. At first glance, Hannah's story would suggest that this is the case.

Minors consent to medical treatment

The law has traditionally viewed minors as being incapable of making their own medical decisions. Understandably, young children who have not yet developed the cognitive abilities or capacity to appreciate the consequences of particular treatments are incapable of making such decisions.

However, as adolescents develop into their teenage years, so too do their cognitive abilities and capacity for decision-making. It is for this reason that the law has afforded greater autonomy to the decisions of minors in this transitional stage of development.

VIEW ALL "To describe Hannah's case as a victory, giving minors a "right to die", seems misguided"

A teenager that possesses sufficient maturity and understanding in relation to a particular medical treatment is legally able to give consent. This principle (referred to as Gillick competence after the UK case of Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402), was originally developed by the House of Lords to protect the confidentiality of teenagers seeking medical treatments in circumstances where they did not wish for their parents to be informed of their decisions (particularly in relation to contraceptive treatments).

The High Court of Australia approved the Gillick principle in Marion's Case (Department of Health and Community Services (NT) v JWB (1992) 175 CLR 218), and it has been accepted as part of Australian law. However, the principle has arguably been developed beyond its original scope and has been relied upon in relation to decision-making for more serious procedures.

To a certain extent, however, it has been limited somewhat by both legislators and the judiciary. For example, in Queensland there have been proposals to prevent minors consenting to certain types of cosmetic surgeries.

Minors and refusal of treatment

With relevance to the decision made by Hannah Jones, there are a number of English authorities that have continuously prevented a minor refusing medical treatment if such refusal would result in that person's death (even in cases where the parents agree with the child's decision).

In Re R (A Minor) [1991] 4 All ER 177 CA, a court held that a 15-year-old girl lacked insight into her acute psychiatric condition, preventing her fully understanding the need for medication. She was therefore held not to be Gillick competent. This may initially appear consistent with the Gillick principle, because she was held to lack capacity. However, the court went on to state that even if she was Gillick competent, she had no authority to refuse treatment.

Similarly, this view was adopted in a case involving a 15-year-old boy suffering from leukaemia. Unlike the previous case, the boy was held to be well informed of his illness, highly intelligent and mature for his age. However, the court would not allow him to refuse a transfusion procedure despite his strong religious beliefs (shared with his parents) against receiving blood products, and ordered the procedure against his wishes.

Of most relevance to Hannah's decision is a further English authority involving refusal of a heart transplantation procedure by a 15-year-old girl. The court overturned the girl's refusal to undergo the transplant, and authorised the operation against her wishes, stating that it was based on the sudden onset of her condition and that she was "not able to come to terms with her situation".

With these decisions, the court was essentially concerned with enforcing medical treatment that was considered to be in the minors' best interests. It seems as though the assessment of a minor's capacity to make decisions is practically irrelevant in context of refusal of treatment: the law states that minors can make decisions about their own treatment, as long as such decision is in line with the vague and ambiguous concept of "best interest".

On this basis, one has to question the benefit of making an assessment of capacity, only to then regard that person as lacking the ability to fully understand the illness or condition with which he or she is suffering.

Right to refuse?

In Australia, there have been a series of cases that have adopted a similar approach to the English authorities, suggesting that the law will almost always favour a paternalistic approach. The law is, however, still uncertain and the question arises: what was different in relation to Hannah's decision?

The critical issue seems to be that there was agreement in relation to her welfare interests. The decision not to force the transplantation was made on the basis of Hannah's individual circumstances and it is possible to view it as consistent with the approach of the common law which is concerned with an evaluation of the individual's welfare.

To describe Hannah's case as a victory, giving minors a "right to die", seems misguided. What should really be recognised is that in this instance there were circumstances suggesting it is not always the best course of action to force treatment upon a minor, and Hannah's brave decision is one worthy of respect on its own merits.

Malcolm Smith is a PhD candidate and lecturer in health law at the School of Medicine, Griffith University