Children and Parents and Medical Decisions

When a child's well-being is threatened, the parental impulse to protect the child is immediate and primal. When decisions about medical treatment must be made, there is often little time to think about the long-term implications or to include the child in developing a treatment plan. In some circumstances, there is a consensus that it is okay to move ahead without the very young child's consent. I know this from my position as social worker in a large pediatric craniofacial center, which involves helping children born with craniofacial conditions and their parents.

But not all threats are the same, and we may need to approach them differently. If the child has a chronic or congenital condition, for example, although the initial threat can be very disruptive, we may not need to move forward so quickly—and doing so may not be appropriate. How to care for and protect children receiving medical treatments is the topic Priscilla Alderson and colleagues take up in this issue of the Hastings Center Report. The question I would like to pose is whether the protection and care of children changes based on the type of diagnosis, its presentation, and its meaning for the individuals involved.

Alderson and her coauthors offer evidence that our understanding of the child's potential role in decision-making relies on outdated constructs of child development and disregards the benefits of confirming what we think we know about what children want. Perhaps the pace of health care has led us to use shortcuts that give us only the illusion of developing a better understanding of a child patient's preferences, when in reality we do not know what they understand or think about their diagnosis and care. Using the example of children who are learning to integrate a diagnosis of diabetes into their identity and are becoming involved in decisions about their care, Alderson and her colleagues show that care can be substantially improved by their participation.

In my work, I help young patients, parents, and medical professionals work through surgical decision-making dilemmas that arise in infancy and are evaluated throughout childhood. For the most part, soon after birth, parents accept and love their children for who they are. And as children grow, they love themselves in the same way. Is it possible to involve and actively engage a young, growing patient in discussions that involve surgical treatments aimed at improving appearance as well as function? Some of these care decisions may be part of what Alderson and coauthors refer to as understanding "the wanted or unwanted effects of the condition and its treatment on their health and person." The reality is that some surgeries offered to patients are not based on good data about outcomes, but on needs identified by patients and their family members concerning how we can improve or eliminate the "unwanted effects on a person." This is true of surgery on cleft lip and palate.

Alderson and colleagues note that people sometimes exclude children from medical decisions in part because they do not want to "burden them with the guilt and blame they might feel if things go awry." But, they ask, who are we really protecting by limiting this discussion? I accept the question and concern, along with the fact that the actual outcomes of some interventions are not well studied. But my sense is that a lack of evidence should not lead to wholesale adoption of Alderson and her colleagues' recommendation to include children in the decision-making. I believe that eliminating "unwanted effects" can be an acceptable, patient-directed goal chosen by parents before their children are of an age to consent, if the parents have taken the time to consider the potential impacts on identity formation that such surgery may have. I worry that the authors' characterization of this choice as "torture" may only further polarize conversations that many are already reluctant to have.

When I talk with parents and children about appearance-improving surgeries, I try to make sure parents understand that it is the child who will wake up after the surgery and incur its benefits and...