“Other letters simply relate the small events that punctuate the passage of time: roses picked at dusk, the laziness of a rainy Sunday, a child crying himself to sleep. Capturing the moment, these small slices of life, these small gusts of happiness, move me more deeply than all the rest. A couple of lines or eight pages, a Middle Eastern stamp or a suburban postmark . . . I hoard all these letters like treasure. One day I hope to fasten them end to end in a half-mile streamer, to float in the wind like a banner raised to the glory of friendship.
It will keep the vultures at bay.”
Those words were produced by Jean-Dominique Bauby, an acclaimed French journalist, author, and editor of ELLE magazine during the latter half of the twentieth century. Bauby was an exceptional and influential talent in his field of work, but today the accomplishment that endures in our collective memory is his memoir Le Scaphandre et le Papillon (i.e. The Diving Bell and the Butterfly).
Bauby died three days after the completion of this autobiographical exploit, but perhaps the most fascinating aspect concerning its creation was that he did not physically write it. He couldn’t. Bauby suffered a massive stroke two years prior and soon after became almost totally paralyzed, locked in his own body except for his ability to blink his left eye. Using only the latter he was able to dictate the contents of his memoir to his aid, Claude Mendibil, providing us with a unique insight on consciousness and, more importantly, the life and work of a man of great talent who was greatly loved…
What of the “non-responsive”?
What does such a term even mean in today’s world of medical advancement?
To most the concept of essentially being locked-in one’s own body is a particularly frightening one, but it does happen – and in retrospect has happened – much more frequently than we would like to think. As of present, we have little concrete knowledge surrounding the workings of consciousness and the lack thereof. We know how such states may arise (e.g. strokes and injuries to certain vital areas of the brain), but we lack the insight necessary to truly what is being experienced and how.
What complicates this issue is that many of the questions and decisions that must be answered and undertaken regarding the afflicted patients usually are matters of life and death. What can be done when communication is the vital for the success of a treatment and yet the very same seems to have been lost indefinitely? Neurologists and ethicists alike attempt to solve the matter.
According to Syd Johnson, an assistant professor of philosophy and recent author of a paper published in the American Journal of Bioethics: Neuroscience, “new research with people using just their brains to communicate reveals that more of them might be able to make their own decisions.” Unconsciousness, in certain special cases, does not warrant unawareness. As in Bauby’s case, certain methods of communication can be identified and developed and we can also search for other methods of assessing well-being through some other response.
“Being able to do that would open up the possibility of assessing quality of life even in those who have never been able to communicate, such as infants or people born with severe cognitive disabilities” explains Johnson.
These propositions do not undermine the complexity of the issue – it may work for some and not for others. The most important thing researchers must have in the search for progress is a careful analysis of the assumptions they make and the overarching questions that surround quality of life.
Johnson wonders whether when caregivers make decisions in these cases they adequately consider the position of the patient. She remarks that many people adjust to their new way of life requiring caregivers “to recognize what might be a foreign viewpoint for an able-bodied person.”
The subjectivity of quality of life is problematic for the increasingly objective nature of diagnostic medical practice. Johnson remains hopeful. “New technologies like fMRI might be able to provide a different kind of objective assessment of subjective wellbeing—by looking at brain activity—in those individuals who are unable to tell us how they’re doing.”
— written by PMO
Sources:
- D. Walikainen. (2013, Nov. 6) “Researcher Seeks to Help Those Who Can’t Help Themselves” [Online] Available: http://www.mtu.edu/news/stories/2013/november/story98975.html
- L. S. M. Johnson (2013, Sept. 11) “Stable Value Sets, Psychological Well-Being, and the Disability Paradox: Ramifications for Assessing Decision-Making Capacity” in American Journal of Bioethics: Neuroscience. [Online] Available: doi:10.1080/21507740.2013.827273



