Beyond Mere Symptom Relief in Deep Brain Stimulation: An Ethical Obligation for Multifaceted Assessment of Outcome

Abstract

Assessment of outcome following deep brain stimulation (DBS) has traditionally focused on symptom-specific and quality-of-life measures. Greater attention needs to be paid to the diversity of patient goals and values, as well as recognition of the shifting nature of those goals over the course of DBS therapy. We report preliminary data from an empirical study examining patients’ goals with respect to DBS in the treatment of Parkinson disease. We argue that a multifaceted assessment of outcome over time, including well-validated symptom measures, quality of life, and functional and patient specific metrics, is ethically necessary in order to fulfill fiduciary and professional responsibilities. These assessments should be augmented with a deliberative multidisciplinary process of review and evaluation. Such an approach will lead to improved inform consent, promote better clinical research, and facilitate good patient care by providing a systematic mechanism for capturing and acting on important patient insights. These processes become increasingly critical as DBS begins to be applied to neuropsychiatric disorders.

Keywords:

• deep brain stimulation
• informed consent
• professional ethics

Acknowledgments

The project described was supported by award RC1NS068086 from the National Institute of Neurological Disorders and Stroke. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Neurological Disorders and Stroke or the National Institutes of Health.