Between Control and Constraint: Charting Three Rhetorics of Patient Agency

Examining Agency in Contemporary Young Adult Illness Narratives

“…Popular in the late twentieth century, George Engle's idea of the biopsychosocial model of medical care in which "the doctor is working on a human, not merely a diseased body" (Stone, 1997, p. 204) seems particularly relevant to our discussion of agency because of its focus on the human. Agency has connections to patient control (Defossez, 2016;Stone, 1997), and we acknowledge scholars' ideas about whether patients can truly have agency. Exposing the ironies of three ways of examining patient agency (i.e., agency as the capacity to know, agency as the capacity to prevent, and agency as the capacity to decide), Defossez (2016) wrote, "While the rhetorics of patient agency persuade us that we have ultimate control and responsibility over our bodies and health, at some point in our lives, the ultimate uncontrollability of our bodies will be made apparent to us" (p. 16).…”

“…Agency has connections to patient control (Defossez, 2016;Stone, 1997), and we acknowledge scholars' ideas about whether patients can truly have agency. Exposing the ironies of three ways of examining patient agency (i.e., agency as the capacity to know, agency as the capacity to prevent, and agency as the capacity to decide), Defossez (2016) wrote, "While the rhetorics of patient agency persuade us that we have ultimate control and responsibility over our bodies and health, at some point in our lives, the ultimate uncontrollability of our bodies will be made apparent to us" (p. 16). Whereas healthcare professionals may view agency in terms of compliance and transmitting knowledge, individuals with illnesses can develop knowledge in the context of what can be complicated and emotional medical journeys (Hunter, Franken, & Balmer, 2015).…”

“…As Defossez (2016) wrote, "There has been a surge of interest in, and respect for, 'patient agency' in public and professional discourses of health and medicine" (p. 2). Agency is a complex term with which rhetoricians have grappled for decades (Defossez, 2016). Popular in the late twentieth century, George Engle's idea of the biopsychosocial model of medical care in which "the doctor is working on a human, not merely a diseased body" (Stone, 1997, p. 204) seems particularly relevant to our discussion of agency because of its focus on the human.…”

“…Whereas healthcare professionals may view agency in terms of compliance and transmitting knowledge, individuals with illnesses can develop knowledge in the context of what can be complicated and emotional medical journeys (Hunter, Franken, & Balmer, 2015). The rhetoric around patient knowledge holds both a resistance to the stance of patient-as-passive-individual (Defossez, 2016) and a recognition of medical professionals' power over patients even while giving appearances of patient agency.…”