Parental Authority and the Weight of Assent: Navigating Moral Dilemmas in Adolescent End of Life Care.

Abstract

Though the idea of assent emerged in the 1980s and adaptation in paediatrics has become more common practice, adolescent end-of-life care adds a multi-faceted layer of increased complexity to the assent process. In the current era of moral pluralism, medical decisions must account for much more than clinical considerations: they must abide by legal standards of decision-making which usually prioritize parental preferences. In the case of an adolescent at the end of life, there remains much room for improvement when disagreements arise. Conflict abounds between the parent or other legal decision-maker and healthcare team in situations where the parent prefers not to disclose the severity of the adolescent's illness or the healthcare team believes continuing lifesaving therapies are not in the adolescent's best interest. These dilemmas challenge how we solicit adolescents' preferences (assent) and their options for refusal (dissent). Disagreements create tension and weaken communication between the family and providers. Healthcare workers struggle to fulfil their professional obligations and retain their professional identities when values collide. We explore the moral distress healthcare workers face navigating conflict amongst various stakeholders involved in the adolescent's end-of-life care. Strategies to minimize moral distress are also provided.