To Forgo or Not to Forgo: Nutrition and Hydration in a Child Perceived to Be Suffering Inordinately by Parents (TH366)

Abstract

•Attendees will be able to describe the American Academy of Pediatrics (AAP) position on forgoing medically administered nutrition and hydration (MANH) for pediatric patients.•Attendees will gain an appreciation for the ethical, religious, spiritual ,and cultural dimension of the question at hand: whether it is ever appropriate to forgo MANH in a seriously ill child who is neither actively dying nor unaware, though is suffering.•Attendees will develop practical skills to mitigate circumstances in which the loving values and preferences of parents for their child conflict with the child's best interest, as perceived by some healthcare professionals. The American Academy of Pediatrics (AAP) has deemed forgoing medically administered nutrition and hydration (MANH) for pediatric patients ethically acceptable in selected circumstances, when there is consensus that the provision of fluids and nutrition do not confer a net benefit to the child. The practice, for instance, might be permissible for a child who permanently lacks awareness and ability to interact with the environment or a child in the dying process for whom nutrition/hydration simply may prolong and add morbidity. It is common practice, for instance, in hospice patients to forgo MANH at the end of life to avoid harmful side effects (respiratory distress, edema, skin breakdown) and mitigate suffering (through uremia and ketosis). But what about the case of a child who is neither actively dying nor unaware, whose parents perceive them to be experiencing inordinate suffering? In this interactive, case-based session, a multidisciplinary panel (including the AAP statement's first author) will explore how to navigate situations where loving parents' values and preferences for their child, which we usually strive to honor and uphold, conflict with the child's best interest, as perceived by some healthcare professionals. Several pediatric palliative medicine physicians and pediatrician-ethicists will analyze the AAP position with special attention to what makes this decision especially complex for children, including the emotional resonance of feeding, the inability of infants to feed themselves, and the best interest standard. A pediatric chaplain will review the religious and spiritual dimensions of this decision, with specific reference to the Ethical and Religious Directives of the Roman Catholic Church, which directly address this issue. Attendees will leave with a deeper understanding of this complex issue as well as practical tools for working through real-life cases in a culture that is increasingly suffering-averse.