Rethinking individual autonomy in medical decision-making for young adults reliant on caregiver support: A case report and analysis

There is a gap in the clinical bioethics literature concerning the approach to assessment of medical decision-making capacity of adolescents or young adults who demonstrate diminished maturity due to longstanding reliance on caregiver support, despite having reached the age of majority. This paper attempts to address this question via the examination of a particular case involving assessment of the decision-making capacity of a young adult pregnant patient who also had a physically disabling neurological condition. Drawing on concepts from adolescent bioethics and feminist critiques of bioethical theory, we argue that limited life experience, secondary to a disabling neurological condition, can result in a lack of adult-like capacity even in a patient who is legally an adult. In such cases, it may be that autonomy, to the extent that it is to be relevant and meaningful, must be viewed through a relational lens. Furthermore, clinicians may avoid unjustifiably paternalistic practices by working with the patient help her gain a better appreciation of the consequences of her decision, thereby calling forward her capacity rather than resorting to being directive in counseling. We conclude that lessons from this case can be used to approach ethically complex instances of medical decision-making in adult patients with normal cognition but diminished experiential maturity.