Case of teen with Hodgkin’s raises question of whether a life is always best served by trying to save it.
Medical treatment, even if life-saving, cannot be forced upon an adult. For underaged children, however, such decisions can be made by a parent or legal guardian. The question of consent becomes a little more complex when the patient is older than 12 but not 18 (an adolescent). These situations require an assessment of the maturity of the adolescent patient, to determine their ability to understand the nature and consequences of their decision and hence whether they have capacity to undertake such a choice. In situations of life-saving treatment being refused, or consent being withheld by the adolescent’s parents, a clinician can seek a judicial determination to override the parents’ objections. A recent court case highlights an even more difficult situation: an adolescent patient who had capacity, did not consent to the proposed treatment, knew that he would die, and had parents who were of the same view.
The case involved a male patient who was 17 years and two months old and suffering from Hodgkin’s disease. He and his family closely followed a religious faith that objected to blood or platelet transfusion as a component of any treatment. A transfusion of blood or blood products would be a breach of the adolescent’s personal relationship with god – a fundamental aspect of his being.
In December 2012, doctors advocated for a clinically higher dose of chemotherapy for the teenager, which would very likely require a transfusion to compensate for side effects. The patient and his parents refused the proposed treatment. By March 2013, non-blood transfusion treatment options had been exhausted. When questioned, the patient said he would “rip out” the IV needle if there was any attempt to transfuse any blood into him. The medical opinion at this stage was that if chemotherapy continued without a transfusion, the patient would probably die of anaemia or cancer because he was receiving a less-than-optimal level of treatment for his condition. Further, there was medical consensus that if the patient did receive the proposed level of therapy, his prospects of being cured were somewhere between 40 and 50 per cent.
The treating health service requested a ruling from the Supreme Court to override the wishes of the patient and his parents. The court was confronted with the reality that if it made an order granting the provision of blood transfusions it might ultimately be futile because in 10 months the adolescent, upon turning 18 and becoming an adult, could make the decision to stop treatment anyway. The court determined he was legally competent to make the decision as an adolescent. However, the court still made orders overriding the patient’s wishes, on the basis that the ultimate consideration is what is in the best interests of a patient. The court determined that sanctity of life, in the end, was a more powerful consideration than respecting the dignity of the individual, even though he was deemed a “mature minor” and competent.
The patient appealed the decision. He argued that he was a mature minor, was very close to adulthood (four months at the time of the appeal) and at such time his decision-making autonomy would be unqualified and beyond the interference of the court. He argued he had very clear reasoning for refusing the treatment and there existed an absence of evidence that the proposed treatment was necessary to avoid death or serious injury to his health prior to his 18th birthday. Finally, he argued that, having deemed him competent, the court did not have jurisdiction to determine the matter, hence his wishes could not be judicially reviewed. The Court of Appeal did not agree, stating that its jurisdiction in this area of the law could not be restricted, as it was “inherently protective in nature”, irrespective of any contrary religious views or beliefs. Courts have power to override wishes of adolescent patients and their parents on the basis of “what is in the person’s best interests”. This necessarily involves balancing potentially conflicting fundamental principles of “dignity of the individual” with the “sanctity of life”.
The court’s ruling reflects the law but even so, is it right, just or even logical? The answer to this question is reliant on an individual’s stance concerning the paramountcy of life as opposed to the paramountcy of adherence to one’s religious beliefs and relationship with god. The balancing of these two competing principles/considerations is so very personal and intimate to the existence of the individual in question. One counter-argument is that the right to reject medical treatment does not depreciate the interest of the state in life or in the sanctity of life. Individual free choice and self-determination are themselves fundamental constituents of life. Hence, to deny individuals freedom of choice with respect to their healthcare can only lessen, and not enhance, the value of life. That said, is the judgement open to challenge? Were the religious beliefs of the patient respected enough, bearing in mind that at the time of the appeal he was four months from turning 18, at which time his decision would not have been reviewable by a court? The judge found that “there is no doubting [his] devotion to his faith, but his life has been cocooned in that faith”. In other words, his faith has been formed in the context of his own family experience and attending religious meetings where all supported this view. The court highlighted a distinction between a view of the adolescent’s and a constructive formulation of an opinion that occurs with adult experience. Arguably the difficulty with this approach might be that upon turning 18 there is no instant review of the up-bringing and socialisation from one’s first 216 months of life, so as to facilitate a fundamental change in one’s religious views and relationship with god.
Ultimately, any answer might simply be a reflection of your own values and beliefs combined with your stance concerning legal paternalism. Like so many of these questions, there is no settled and accepted answer. Yet ask Reed Richards and he would say “Who are we to make such a decision? To allow another living being – any living being – to die, when ours is the power to prevent it?”
Scott Trueman is a lecturer in the school of nursing, midwifery and nutrition at James Cook University.Do you have an idea for a story?
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