Tethered to the Diving Bell: Beyond Vulnerability to Autonomy

Abstract

Respecting the autonomy of patients is complex and subtle. First and foremost, patients with serious and disabling illnesses experience dependence because their ability to express themselves is compromised in some way. They are vulnerable and need help. The Diving Bell and the Butterfly by Jean-Dominique Bauby tells the dramatic true story of a man living with locked-in-syndrome (LIS). His motionless body belies his desire to interact with others. As Bauby's memoir richly describes, autonomy is not simply a matter of having a will of one's own; it depends on our ability to communicate with others and on others' willingness to listen and connect with us. Because it was virtually impossible to tell what Bauby was feeling or thinking, caregivers had to find a way into his diving bell. They did this first by diagnosing and treating him, and second by finding ways to help Bauby express himself. By paying attention to his vulnerability, they helped restore his autonomy. When internal medicine residents and I discuss the memoir, we notice the intricacies, surprises, and challenges of respecting patient autonomy. The residents also empathize with the isolation experienced by seriously ill patients, which can lead to more compassionate care.The viewpoints expressed on this site are those of the authors and do not necessarily reflect the views and policies of the AMA.