Grant: CIHR Fellowship

Deep brain stimulation (DBS) is a neurosurgical approach to manage motor symptoms in Parkinson's Disease. Since the approval of DBS by the FDA in 1997, over 35 000 patients in numerous countries have received DBS with improved quality-of-life in most patients. Many important ethical and social issues arise from DBS in PD. The high costs of the procedures may create challenges for patients, providers, and healthcare systems, including the fact that patients may be placed on wait lists. Meanwhile, securing consent for this last-resort intervention is another area of ethical significance given enthusiastic media response to DBS in PD. In addition, there has been little examination of the adaptation challenges faced by patients or caregivers after surgical intervention by DBS, for example challenges reintegrating into work or challenges adapting to radically improved motor symptoms. In spite of the dynamic emergence of neurostimulation and related ethical and social challenges, there are few if any studies identifying and characterizing the ethical and social landscape of DBS drawing on the experiences of patients and caregivers. In this interview-based study, we will discuss ethical and social issues with patients suffering from PD who have undergone DBS and their caregivers. These perspectives will help to contribute to practice changes in the field of DBS with relation to PD patient care.