Sheila McLean: Whose decision is it, anyway?

Sheila McLeanThe case of Hannah Jones has unsurprisingly provoked intense, and often emotional, debate. It is somehow counter-intuitive that a 13 year old should choose a path that will inevitably result in her death, when treatment is available. Equally, many have questioned whether or not someone so young should be allowed to make this kind of decision. Each of these considerations likely caused Herefordshire Primary Care trust to seek legal advice.

Hannah’s case also stands out as it is unusual in terms of what had been the trend in cases in England. For example, in the case of Re M a young woman who was 15 1/2 years old refused to agree to a heart transplant. She declared that, while she did not want to die, she did not want to live with someone else’s heart, nor was she willing to ensure the rigorous medical regime that would follow a successful transplant. The court was tasked with addressing what was in M’s best interests, and concluded that these could be found in proceeding with the heart transplant. Although M did apparently acquiesce in the transplant, her condition was by that stage very serious and the question of whether or not she was capable of offering a legally valid consent must be moot. However, apart from the finding that the surgery would be in her best interests this case shows that, while children’s opinions may be taken seriously, they are not necessarily definitive of the issue. While we might rejoice that a life was saved, this decision has been described as being at “the outermost reaches of acceptable paternalistic practices.”[1] One must also wonder what would have happened had M’s resistance continued – would the doctors caring for her have been expected to coerce her to accept treatment? And assuming that the transplant were successful, would it have been lawful – in the face of her continued resistance – to force her to take the medicine needed to keep her alive? If not, would it not have been a waste of an organ that could have benefited a willing recipient?

In the earlier case of Re E a young man a few months short of his 16th birthday, and a committed Jehovah’s Witness, refused to accept blood transfusion. His parents agreed with his decision. Nonetheless, the court decided that the transfusion should proceed. Although agreeing that the young man in question was apparently intelligent and otherwise competent, nonetheless he was not deemed competent to make this particular decision since he did not understand the manner of his death and the suffering it would entail for him and his family (although it must be said that it is not clear that he could not have done this had the information been provided to him). The court also speculated that his religious views might change over time; while avoiding directly suggesting that his religious views were unduly influencing him, this can arguably be read into what the court said. In this case, on reaching the age of eighteen, he once again rejected transfusion and subsequently died.

In analysing Hannah Jones’ case, these two earlier cases shed light on what has been the position in English law in the past. Interestingly, each of these children was older than Hannah, yet their decisions were not truly respected (bearing in mind the questionability of M’s competence at the stage when she apparently agreed to the surgery). In M’s case, her competence was said to be threatened by her being overwhelmed by her situation, and in E’s case, the fact that he was thought not to understand the consequences of his decision was sufficient to deny his competence or capacity to make a decision. It is tempting, however, to speculate that courts were including in their decisions a more subjective consideration – namely, that it could not be in the best interests of the young people concerned to be allowed to make a decision that would result in their death.

While this is intelligible – and will possibly be applauded by some – there are two issues that flow from this. First, the question of best interests is appropriate where the person concerned is not legally competent. The a priori judgement then must relate to whether or not the person is, in fact, competent. If not, then best interests are judged by third parties; if so, then theoretically the decision making authority rests with the individual. Technically, the outcome of the decision should not be of concern to the court. However, since courts adopt an approach to competence that assesses what is needed for a child to be legally competent according to the gravity of the decision to be taken, where that choice may or will result in death it can be assumed that the level of capacity required would be high indeed (arguably, higher than what we would expect of an adult).

Interestingly a different approach seems to emerge from Scots Law, although it should be noted that the judgment in question was of a lower court and has not been tested. In Houston, Applicant, a 15-year old boy refused hospital treatment for a psychotic illness. His mother wished the treatment to proceed, and maintained that she had the authority to consent on his behalf because he was under the age of sixteen. In this case, the Sheriff Court noted that the Age of Legal Capacity (Scotland) Act 1991 allowed competent young people under the age of sixteen to consent to medical, surgical or dental treatment or procedures. This, said the court, must also include the right to refuse medical treatment. The competent minor’s decision, it was said, was “paramount.”[2]

To return to Hannah Jones’ case, it seems that she convinced a child protection officer that she was indeed competent to make the decision to die “with dignity” with her family around her, rather than opting for surgery (which might not be successful) and constant, ongoing medical treatment. Perhaps Hannah’s case is distinguishable from M’s case because she had been receiving medical treatment for many years, and associated it with distress and discomfort. It certainly could not be said of her that she did not understand the consequences of accepting the treatment, and, perhaps, by implication, of refusing it. Nor is age alone a determinant of capacity. As the Mental Capacity Act 2005 says “[a] lack of capacity cannot be established merely by reference to – … a person’s age … . (section 2 (3) (a)).

In conclusion, even if we feel uncomfortable with Hannah’s decision, if she is indeed competent it is hers to make. Of course, the fact that her parents supported her decision may have influenced the ultimate acceptability of the decision, but it also suggests that young people have more authority than had previously been assumed. The tradition of allowing young people to agree to treatment but not to refuse it (or to have their refusal overridden) is challenged by this case, albeit that it did not end up in a court of law and, therefore, establishes no precedent. Those who have studied children’s capacities and found them to be greater than is sometimes assumed will doubtless welcome this decision as evidence that we are becoming more sensitive to the idea that young people’s competent decisions should be respected, even if we disapprove of them. It also highlights that we need not treat just because we can. People’s interests are not merely “medical” interests – they are also personal, made up of preferences and experiences which only they can evaluate. Hannah has made her choice, however hard it must have been.

[1] Mason JK. Laurie GT. Mason and McCall Smith’s Law and Medical Ethics. 7th ed. Oxford: OUP, 2006, para 10.54.
[2] It should be noted, however, that in this case the treatment was authorised because of the gravity of the young man’s illness.

Professor Sheila A M McLean LLB. MLitt, PhD, LLD, LLD, FRSE, FRCGP, F Med Sci, FRCP(Edin), FRSA
International Bar Association Professor of Law and Ethics in Medicine
Director, Institute of Law and Ethics in Medicine at the University of Glasgow