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Pediatric Bioethics

December 2018

Do We Owe It to the Future Adults Children Will Become Not to Make Certain Decisions for Them Now?

Author: Jeremy R. Garrett, PhD | Children’s Mercy Bioethics Center 

Column editor: John D. Lantos, MD | Director of Pediatric Bioethics | Professor of Pediatrics, UMKC School of Medicine

The idea of an “open future” shapes many of our cultural and ethical norms regarding children. Parents, for example, teach their children that they can be anything they want when they grow up, while educators emphasize cognitive, communicative and social skills that will outfit students for any number of careers and lifestyles. Conversely, many are suspicious of parents who drive their children toward narrowly predetermined goals and/or shelter them from experiences that might threaten such goals–the stage parent who seems to be fulfilling their own dreams through their child, or the much-derided “helicopter parent” who infantilizes a child, rather than propelling them out into the open future of autonomous adulthood. In these and other examples, what is endorsed and even celebrated is the ideal of leaving many choices “open” for children to make for themselves as they mature and develop.

However appealing this ideal may seem in the abstract, it raises considerable ethical debate in the context of pediatric decision-making. When issues or cases are considered, a judicious, but admittedly mundane, insight—namely, that decision-making for children should weigh their future, and not merely their present interests—is routinely bypassed in favor of the much stronger claim that children have a “right” to an “open future.” For pediatricians and bioethicists, this right entails that decisions should be deferred until adulthood, unless they are “clinically actionable,” i.e., would enable clinical therapeutic management that could reduce the risk of morbidity and/or mortality during childhood.

This may all seem well and good.  However, it is worth pausing to consider the costs and risks of claiming a “right” in this context. Rights are the strongest moral constraints that we have. They tend to overwhelm everything else and drastically reduce flexibility for decision-making. These are not necessarily virtues when applied in the messy and complex world of pediatrics, where families and patients—and the decisions they face—come in all sizes, shapes and settings. 

Fortunately, the ethical construct of a “right” is not necessary to identify and adequately protect the primary concern here–the child’s interest in an open future. The notion that children have interests in an open future fits well with standard ethical guidance in pediatric bioethics. The child’s interest in an open future is one important, but not automatically the most important interest to consider and balance in the process of shared decision-making. In other words, an open future is best understood not as a separate principle of pediatric bioethics, but instead as one component of its traditional focus on interests and balancing benefits and harms to children and families.

In 2009, Malek proposed a list of 13 important interests that should be considered in pediatric decision-making, including (1) life, (2) health and health care, (3) basic needs, (4) protection from neglect and abuse, (5) emotional development, (6) play and pleasure, (7) education and cognitive development, (8) expression and communication, (9) interaction, (10) parental relationship, (11) identity, (12) sense of self, and (13) autonomy. Each of these interests is a capacity, activity or state of affairs that contributes to the well-being of children, and most medical decisions will involve some tradeoffs among these interests. While an interest in an open future is not explicitly included in Malek’s list, it should—and easily could—be added, perhaps as one component of the interest in autonomy–i.e., an interest in preserving future autonomy.

A nuanced interest-based framework like this better serves pediatric clinical ethics than a rights-based approach. This framework facilitates better decisions about whether the full range of interests for any particular child are promoted more by opening or closing certain futures. The interest in preserving future autonomy is weighed alongside other interests identified by Malek, potentially supporting different conclusions in different circumstances. Foreclosing the opportunity to make certain choices later may promote a child’s overall interests in some circumstances. For example, many pediatric decisions, like the choice to remove a supernumerary digit, could be delayed until the child reaches adulthood. However, while such delays likely would promote the child’s interest in future autonomy, foreclosing those later decisions and proceeding with surgery now will often better serve the child’s overall interests. 

In some circumstances, producing or preserving openness may be the most compelling interest. Decisions like career choice are frequently viewed this way: parents typically take measures to keep their child’s future career options open, even though it might serve other interests to radically narrow this range earlier (e.g., strongly funneling them into a lucrative family business). Individual families working with their chosen care providers are best positioned to identify and balance competing interests in particular circumstances. The claim that children have a “right” to an open future has impeded that ideal approach for too long in too many pediatric contexts.

 

Reference:

What Really is in a Child's Best Interest? Toward a More Precise Picture of the Interests of Children. Malek, J.  The Journal of Clinical Ethics 20, 175-182 (2009).