“When I am depressed, everything—standing, stepping, speaking, moving, pursuing a train of thought—gets hung up on that loop…that ends up feeling like paralysis. I can’t. I want to. I can’t. If I finally do break free, my sense of self gets left behind. It’s as if momentum comes at the cost of identity.”
Neuroscientist Helen Mayberg gave this quote, from an anonymous patient trying to describe what life was like before her depression was treated with deep brain stimulation (DBS), at the final session of the 2016 International Neuroethics Society (INS) meeting, in San Diego on Friday. Mayberg was one of three panelists offering the audience different perspectives of using the experimental and invasive implantation (it requires surgery deep into the brain) for depression. Philosopher Sarah Goering spoke about the ethical concerns from patients who utilize DBS devices, and neuroscience writer Mo Costandi discussed how DBS is represented in mass media.
Paralysis before treatment (mood so low one is unable to perform the tasks of daily living) is common among most of the patients Mayberg and her team implant. She stressed the need for doctors to empathize with patients before casting judgment on whether or not DBS can be considered as an ethical form of treatment. She asked the audience, “What would you do if you were in that state and you could not move and you were in that kind of pain and every single available treatment that you had tried did not work—including electroconvulsive shock therapy?”
In most of the media coverage on deep-brain stimulation, the reporting is not balanced, said Costandi. After analyzing news articles from the US and abroad, he noted that more than half were overwhelmingly positive and touted the treatment as a “miracle cure.” Only about four percent of the stories emphasized the risk involved, as well as the ethical issues. It’s important for journalists to mention the experimental nature of the procedure, as well as the potential risks involved, Costandi said: It’s just as important to talk about the successes as it is the failures.
Working with focus groups of people who have had DBS devices implanted to treat their depression or obsessive compulsive disorder, Goering’s team looked at the ethical implications from patients who can freely adjust their own levels of stimulation versus patients whose doctors control the levels in their devices. She admitted feeling skeptical about DBS for mood when first beginning her research with the focus group, but she was surprised to hear the majority of participants say that the open-loop devices—giving them free reign to adjust their levels—saved their lives. “That was important to recognize,” she continued:
“But it’s success that’s tempered because then they had all these really interesting things to say about other effects that follow with feeling better about their lives…concerns about identity and authenticity, concerns about their relationships with other people, concerns about volitional control…and real concerns about long-term responsibilities for the devices.”
– Seimi Rurup
For more on this topic, please also see “Ethical Issues in Deep Brain Stimulation” by Maartje Schermer in Frontiers in Integrative Neuroscience.