Grant: Operating Grant

Deep-brain stimulation (DBS) is a viable treatment for Parkinson's disease (PD) and Essential Tremor (ET) that offers advantages over drug therapy, especially for later disease stages. Since the approval of this latter technology by the FDA in 1997, over 35 000 patients in numerous countries have received deep brain stimulation with improved quality-of-life in most patients. Recent studies have expanded the use of neurostimulation. For example, in patients with treatment-resistant depression, deep brain stimulation modulating the activity of the subgenual cingulate region has improved mood. Vagus nerve stimulation (VNS) has also been tried in patients suffering from drug-resistant depression. Many important ethical and social issues arise from these neurostimulation-based surgical interventions in PD and beyond. The high costs of such procedures may create challenges for patients, providers, and healthcare systems. Securing consent for last-resort innovative interventions is another area of ethical significance given enthusiastic media response to DBS in PD. In spite of the dynamic emergence and extension of neurostimulation and related ethical and social challenges, there are few if any empirical studies identifying and characterizing the ethical and social landscape of both current and emerging practices. Of particular ethical importance is the need to understand the experience of patients and caregivers. Accordingly, this study will: 1. Identify and characterize ethical and social issues in the application of deep brain stimulation in Parkinson's disease based on patient perspectives and experiences; 2. Identify and characterize ethical and social issues in the application of deep brain stimulation in Parkinson's disease based on caregiver perspectives and experiences; 3. Identify and initiate relevant practice changes in the ethical use of deep brain stimulation in Parkinson's disease.