Responding Ethically to Patient and Public Expectations About Psychiatric DBS

Abstract

In the last years, TV documentaries, articles in popular magazines, and Internet content have increased the public visibility of deep brain stimulation (DBS). The media may have also provoked significant clinical and public interest in potential future applications for treating psychiatric disorders beyond the current use of DBS in neurological disorders. In this article, we review and discuss the topic of patient and public understanding of DBS, focusing on both the clinical consequences of patient understanding as well as the broader social consequences of public understanding. The literature and the experience of clinicians suggest that strongly optimistic media reports of DBS have had detrimental consequences for informed consent and the management of patient expectations before and after surgery. Likewise, this context has created complex issues for trust between clinicians, patients, and their families and may have hard-to-predict social impacts including on the relationships between public understanding of neuroscience, biological therapies, stigma, and mental illness. We propose an approach to tackle the clinical and social consequences of media messages on public understanding within a broad and interdisciplinary effort with concrete actions. This approach includes actions by all key players, including not only providers but also patients and their family members, as well as journalists. To further address issues at the intersection of informed consent and patient expectation, there should be more discussion on and actual testing and measurement of these recommendations or similarly minded practice changes.

Keywords:

• deep brain stimulation
• informed consent
• media
• neuroethics
• psychiatry

Acknowledgments

We thank participants in the expert workshop on “Deep brain stimulation in psychiatry: Guidance for responsible research and application” held in Bonn, January 20–21, 2011. Support for this research comes from an operating grant of the Canadian Institutes of Health Research. We also thank Lila Karpowicz for comments on a previous version of this article.