Abstract
The most important question that this troubling case prompts is “Who has the ethical, or moral, authority to make decisions about the medical treatment and care of Max?” Individuals are generally recognized as having the right to make such decisions if they meet certain standards of competency such as having the capacity to understand information, weigh the risks and benefits of treatment and nontreatment, and communicate their wishes (e.g. UK Mental Capacity Act 2005). During the period of time when Max consciously refused further aggressive treatment, the health care team acknowledged that Max met these criteria. Why, then, was Max’s refusal of treatment set aside?
Max is 17 years old and his parents seem to be under the impression that because Max is a minor, they have the authority to make decisions for him. The health professionals lend weight to this assumption when they override Max’s explicit refusal of cardiopulmonary resuscitation (CPR). In doing so, they are also acting against their own view of what is in Max’s best interests. They had, after all, scheduled a meeting with the family to share their conclusions with them that any further treatment for Max would be futile. It is also clear that further treatment would involve additional suffering. The decision then, to continue treating Max, is not based on any ethical concern—to respect his autonomy or to ensure his well-being. The decision is made, according to the author of the case study, because the parents “have legal authority to consent to treatment or withdraw it.” The law, or fear of the law, drives the decision-making process.
Legislation varies in relation to the authority of minors to consent to medical treatment (the United Kingdom and Ireland, for example, set the age of consent at 16 years with provision in the United Kingdom to allow mature under-16-year-olds some further leeway). However, whatever the age of consent, there is a further consideration in the case of children. Parental consent is a kind of proxy consent. It does not have the same ethical and legal weight as individual consent. One compelling reason for this is that while it is generally assumed that parents act in the best interests of their children, this is not always the case. Sometimes, for various reasons, they do not. Health professionals have a key role to play in safeguarding the interests of individuals, such as Max, who might be considered incompetent on the grounds of age or lack of consciousness. They are obliged to negotiate with proxy decision-makers in order to ensure an ethically sound outcome. In Max’s case, the health professionals fail to fulfill this role in any meaningful way and seem to capitulate to the wishes of Max’s parents without pause or caution. It is the nurse who, eventually, attempts to resist a further escalation of treatment.
Finally, it is important to distinguish between two different kinds of rights in this case: the right to refuse treatment and the right to choose a particular kind of treatment. While a patient has a near absolute right to refuse medical treatment, they (or their proxies) do not have the same right to choose any kind of treatment they want. One very important limit on the right to choose a specific treatment is the moral integrity of health professionals. At the heart of international codes of professional conduct is the obligation on health professionals not to act in ways that they consider futile and/or harmful. So, even if the legislation in Max’s country gave sweeping powers to parents over their children, the integrity of those who carry out the treatment, which parents insist upon, needs to be safeguarded. Parents cannot force health professionals to carry out treatment on their own bodies that they, the health professionals, consider harmful. Even less so, can they insist on treatment that health professionals believe will harm their children.
How might things be done differently? Communication seems to be a problem here. When the team schedules the meeting, their focus seems to be solely on what they cannot do for Max. They might focus more positively on what they can do. This might reassure the parents that they are doing everything that can be done to care for Max. All the people involved in the case—Max, the parents, and the health care team—could be more clear about their roles in the decision-making process. Even if Max does not have legal authority to make treatment decisions, there is, nevertheless, an ethical obligation to respect his autonomy by enabling him and involving him in the decision-making process. Again, even if the parents do not have sole decision-making authority, their input is important and there is an onus on the health care team to make sure that they fully understand the treatment options, the likely outcomes, and the concerns of the team with regard to them. Max is dying, but his suffering, his parents’ grief, and the health professionals’ distress will be ameliorated if they have made decisions that are informed, negotiated, and shared.