Session: Envisioning New Models for Equitably Addressing Disability and Brain Death
Neurological disorder, non-speaking intellectual disability, and patient-centered communication: shortcomings of an autonomy-centric model
Friday, October 13, 2023
3:15 PM – 4:30 PM ET
Location: Heron (Fourth Floor)
A core aspect of good care is patient-centered communication—a practice which promotes patient understanding and maximizes autonomy. Yet some adult patients are unable to communicate in readily accessible ways, and some unable to communicate verbally at all: those having suffered traumatic brain injuries, those in the late stages of neurodegenerative diseases, and those with non-speaking intellectual disabilities. Such cases complicate the clinician’s ability to engage in patient-centered communication. In the first two cases, it is not uncommon for clinicians to invest significant effort to help patients communicate in other ways (writing, innovative technology, robust family engagement). But in cases of significant intellectual disability, this same effort is not often exerted. We argue that these differences arise from three misconceptions: (1) the assumption that non-speaking intellectually disabled patients cannot communicate, (2) a conflation of the value of communication with the value of capacity, and (3) an overly narrow view of the value of autonomy in healthcare as deriving from its connections to capacity, consent, and decision-making. Instead, we advance the view that the value of patient-centered communication should be embedded in a view of autonomy that is distinct from the value of capacity: the value of being “the captain of one’s own ship” (Shiffrin 2004). Through this lens, the obligations of patient-centered communication do not disappear for non-speaking intellectually disabled patients. We end with two suggestions for how clinicians might improve their approaches: setting aside more time to form relationships with these patients, and a disentangling of capacity from communication.
Ally Peabody Smith, PhD – UCLA, Geffen School of Medicine