An adolescent’s last moment of life is an emotionally and medically complex time. Children may grapple with understanding the things happening to them and with grief of a future lost; caregivers struggle to simultaneously balance deep sorrow, hope, and love; and healthcare providers fight to maintain sound medical and ethical decision making. Increased discussion regarding adolescent end-of-life care is needed so that clinicians may better understand how to engage in ethically based medical management during these events. This holds particularly true (...) in situations where potentially conflicting ideas exist between clinicians and family members. We describe the case of an acutely and terminally ill adolescent who remained cognitively intact but with rapidly advancing multiple organ failure and whose parents requested that he remain uninformed of his critical illness and prognosis. (shrink)

During goals of care conversations, palliative care clinicians help patients and families determine priorities of care and align medical care with those priorities. The style and methods of communicating with families and negotiating a care plan can range from paternalistic to entirely patient driven. In this paper, we describe a case in which the palliative care clinician approached decision-making using a paradigm that is intuitive to many clinicians and which seems conceptually sound, but which has not been fully explored in (...) the bioethics literature. This paradigm, termed maternalism, allows the clinician to direct decision-making within a relationship such that best interests and autonomy are mutually reinforced, thus reflecting relational autonomy as opposed to individual autonomy. We explore whether this method is appropriate in this case and explain how it captures significant ethical features of the case that might be missed by other approaches. (shrink)