Scaffolding Autonomy

Adolescents and adults with intellectual and/or developmental disabilities who have partial capacities to exercise autonomy require respect as well as protection throughout medical decision making. Using an ethical lens that prioritizes respect for persons based on a conception of relational autonomy over beneficence, this chapter explores two contrasting yet related cases where developmental issues may complicate shared decision making. Young adolescents and some adults with intellectual or developmental disabilities may have limited capacities to form and express their values and yet may also need sensitive empathic communication and cognitive scaffolding to make decisions that enact their fundamental values. This chapter examines the conscious and unconscious emotional aspects of conveying diagnoses, prognoses, and other aspects of shared decision making. Empathic scaffolding looks different for each patient in their specific care and familial context but tracks how the patient’s sense of futurity and agency are affected by the clinician’s communication—is the communication accessible, empowering, and offering options that the patient can work with? Empathic health care communication also requires that the clinicians strive for awareness of how their own unconscious psychological processes might be conveying emotional messages to vulnerable patients, including, for example, their suppressed grief after witnessing pediatric patients go through failed bone marrow transplants. Shared decision making thus requires much more than a procedural commitment to respecting individual autonomy but rather calls for addressing the inescapable emotional, relational basis of clinician-patient decision making at vulnerable moments for especially vulnerable patients.