When choosing between curative or palliative treatment, even autonomy isn’t absolute

Courts strongly favour the right of competent individuals to refuse treatment but the particulars of each individual case can lead to exceptions.

As previously canvassed in this column, there exists a fundamental right for a competent adult to refuse treatment, even if such a decision will lead to death. Further, this column has discussed the difficult area of consent concerning a minor whose guardians’ wishes contrast with those of a treating team. Two recent cases are enlightening on the issues of consent and autonomy, but for different reasons.

The first case involved a 6-year-old boy with advanced cancer. The court was hearing an application from the treating team to provide chemotherapy and radiotherapy. They remained firmly of the view that, notwithstanding the reduced prospects of a cure, the child should proceed urgently to curative treatment. The proposed course of treatment represented the child’s only hope, however remote, of a cure. A further submission made by the treating team of the relevant hospital was that they had never stopped curative treatment and embarked on palliative care when a child was responding positively to chemotherapy. They expressed concern that if they stopped treating the child with curative intent, it would set a dangerous precedent whereby parents may insist on palliative care when their child is responding to conventional treatment.

The parents of the child did not consent to curative treatment, seeking only palliative treatment. The parents believed that the quality of the child’s life should be prioritised over the duration of his life. They did not want their child to spend the time he had left enduring curative treatment processes that had low prospects of success. They considered that even if the curative treatment processes were successful, the long-term side effects of radiation therapy were too high a price to pay for longevity. They held deeply the belief that the child had a right to die with dignity and in peace.

The court stated that it may legitimately be informed in its deliberations not only by the clinical opinions of medical experts, but also by opinions concerning the ethical issues; the decision was not just a medical dilemma but also involved a moral and ethical quandary. Therefore, the question of whether a decision to opt for palliative care was wrong was not purely medical in nature. The court was at pains to point out that the case was not “… about parental rights … Perceived power of the medical profession [or] in a general sense, [whether] quality of life is more important than duration of life… It is not about overarching considerations as to the right to life, or the right to a peaceful death, nor is it about a philosophical consideration of the best interests of children generally. This case is solely about [the child], and how to determine what is in his best interests as a unique individual child in the specific circumstances which he now faces”.

Having regard to the best interests of the child, the court ruled in favour of palliative care. In so doing, the judge compassionately stated: “The importance to [the child] of his relationship with his parents weighs heavily in my decision. That relationship, and the support and love which only his parents can give, are of critical importance to [him] and to his quality of life over the months to come. I am deeply concerned that any perpetuation of the conflict over [the child’s] treatment will continue to diminish the ability of his parents to focus their energies solely on the provision of that support and love directly to him when he needs it most.”

The second case concerns the right to autonomy and the issue of consent for a prisoner. It is unusual for its consideration of the refusal of medical treatment by a prisoner serving a life sentence for murder. At the time of the hearing, the prisoner had inflicted upon himself an injury to his neck, with a homemade weapon. The wound was not healing and the prisoner refused to take prescribed medications. He also exacerbated his injury by inflicting further wounds upon himself. The treating team wanted an order forcing treatment by way of intravenous antibiotics.

The judicial discussion concerning the provision of treatment, issues of capacity and treatment in situations of an emergency, were not controversial. Far more novel was the discussion of whether a prisoner has a right to autonomy to refuse medical treatment. The court decided against the existence of such autonomy, saying that it was a false premise that a prisoner has a legal entitlement to exercise autonomy in a manner that would frustrate the order of the court, which had sentenced him to imprisonment for the rest of his natural life.

The court concluded: “Thus, I made an order compelling the [prisoner] to undergo treatment, on the basis that, as a prisoner in custody under a court order, he is not simply entitled to refuse treatment where this would either directly or ultimately put his life at risk and thereby frustrate the verdict and order of the court. To that extent, his rights to autonomy, privacy and bodily integrity are qualified by his status as a prisoner and his liability to undergo his sentence, which necessarily involves a prohibition on his frustration of that sentence by self-harm including harm by neglect or omission in relation to matters such as medical or surgical treatment, nutrition or hydration.”

The courts jealously guard the right to autonomy. But with the law there are exceptions. In the first case, the court upheld the right, even though it meant the child would certainly die. In the second case, the right was qualified by a person’s status as a prisoner. Whether a reader agrees with either or both of these judgements is personal. As the judge in the first case highlighted: “… the determination of best interests is not a precise science. It is multifaceted and complex. It is susceptible to very different conclusions being drawn by different people of equal compassion, sincerity and integrity.”

Scott Trueman is a lecturer in the School of Nursing, Midwifery and Nutrition at James Cook University.

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