Clearly there are patients for whom standard neurological exams cannot reveal their actual level of brain functioning. And yet there is no concerted, widespread effort to use higher-level testing to assess these patients for covert consciousness (despite recognition that these assessments can do so).
As a critical care doctor and a writer, I take pause when I come upon ethically challenging medical scenarios I think could make their way into an essay. As tempting as it is to write about the moments when health care providers are uncertain or the times that we blur ethical lines, some stories simply are not useful to share. I often ask myself: Will telling this story help people better understand the medical system or their own reactions to it, or could I inadvertently do harm? These questions loom particularly large when it comes to my latest guest essay, in which I delve into a growing body of research on what some call "covert consciousness" — the fact that a significant percentage of people who appear unresponsive on exams are in fact aware and can understand what we are saying to them. Though this research is fascinating, I hesitated before writing about it. I worried that the hope it might offer could harm desperate loved ones who are trying to come to terms with the realities of devastating brain injuries. That it could be misinterpreted to increase distrust in the medical system. There is already so much uncertainty when it comes to neurological prognostication, so many challenges when it comes to communicating that to families. Do I need to add to that complexity? But as I talked to neurologists for this essay, I realized that my discomfort is exactly why we need to talk about these findings and, for me at least, to investigate what is behind that reaction. These patients are people who are aware enough to follow commands but unable to move, and are in long-term-care facilities where they are treated as if they have no conscious awareness. One of the neurologists I spoke with told me that when we come across information that calls into question what we believe to be true, there are two choices: We either ignore the data that troubles us or we engage with it head-on. This is my attempt to do the latter.
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Keep a civil tongue.