In carefully selected treatment-refractory patients with obsessive compulsive disorder (OCD), deep brain stimulation (DBS) or anterior capsulotomy (AC) might be considered as a possible treatment. However, the direct intervention in the brain can raise questions about autonomy. Do patients still feel like they are in control of their actions when their behavior is changed by a surgical intervention?

To examine in both AC and DBS patients whether these intervention influenced perception of autonomy. We aimed to discover any differences in these perceptions when comparing AC and DBS patients.

We conducted semi-structured interviews with AC and DBS patients. Interviews were recorded digitally and transcribed verbatim. We analyzed interviews in an iterative process based on grounded theory principles.

We interviewed 10 DBS patients and 6 AC patients. Sense of agency (the awareness that one is the author of his/her own actions) did not seem to be diminished by AC or DBS. However, especially DBS patients are aware of their dependency on a device for their well-being. Another important theme is authenticity (in how far patients perceive their actions and thoughts as matching their self-concept). Feelings of authenticity can be disturbed especially in cases of induced hypomania (for DBS) or apathy (for AC). OCD itself also has an impact on autonomy as patients describe a lack of freedom due to their disorder.

Despite extensive changes in emotions, behavior and even personal identity after DBS or AC surgery, perceived autonomy was not greatly altered in these OCD patients.

Medtronic provided grants for research, education, and traveling to B. Nuttin and L. Gabriëls, who hold the Medtronic Chair for Stereotactic Neurosurgery in Psychiatric Disorders at KU Leuven. S. Raymaekers is supported by this Chair. B. Nuttin co-owns a patent on DBS in OCD.