Pediatric Authenticity: Hiding in Plain Sight

Abstract

The range of decisions considered permissible in pediatrics is typically understood to involve a balance between patient interests and parental or surrogate authority. In this article, we argue that there is a distinct set of considerations relevant to pediatric decision‐making that is often neglected or unacknowledged in pediatrics—namely, considerations related to patient authenticity. The standard of pediatric authenticity asks not what is best for the patient or what the patient would choose but, rather, what is most consistent with who the patient is. We begin the article with an overview of the best interest standard and suggest that authenticity can elucidate considerations that fall between a child’s strictly medical interests and broader familial or relational interests. Next, we discuss authenticity in greater detail, noting the limits of applying certain philosophical conceptions of authenticity in pediatrics. We then sketch our own account of pediatric authenticity and distinguish it from the related concepts of subjective interests and assent. We conclude with a discussion of three cases illustrating the normative significance of authenticity in a range of situations arising in pediatric medicine.

An ethical approach to shared decision-making for adolescents with terminal illness

“…Adolescent clinical cases alone raise a number of unique ethical issues compared to medical decision-making for adult patients, and the same goes for terminal illnesses when compared to non-severe illnesses. 6,7 This paper explores the relatively underdiscussed ethical tensions and features unique to SDM in an adolescent patient-parents-physician triad in the context of a terminal diagnosis. We propose an ethical sliding scale focused on the patient's time left to live as a primary driver for how much weight should be given to an adolescent patient's versus their parents' opinions when conflict in decision-making arises.…”

“…This discussion on QOL is related to the idea of authenticity in pediatric medical decision-making, which refers to a child or adolescent's concept of self and related behaviors, relationships, goals, and other components of what makes a child themselves. 7 QOL priorities may shift with the severity and stage of disease (e.g. late stage QOL priorities might be eating and drinking with minimal pain).…”

“…6,22,23 Some have argued that the decisional authority should lie with the adolescent in these situations, as a terminal illness carries a normative meaning for medical decision-making. 7,24 However, there is little exploration into how SDM should be carried out in adolescents with terminal illness.…”

“…This discussion on QOL is related to the idea of authenticity in pediatric medical decision-making, which refers to a child or adolescent's concept of self and related behaviors, relationships, goals, and other components of what makes a child themselves . 7…”

“…Adolescent clinical cases alone raise a number of unique ethical issues compared to medical decision-making for adult patients, and the same goes for terminal illnesses when compared to non-severe illnesses. 6,7…”