Source: Shireen Jeejeebhoy
The brain is the final frontier. As I asked last week, have researchers even discovered the full anatomical structure and physiology of the brain? As one clinical psychologist told me, innovators are rethinking the brain as neural networks. Yet doctors and ethicists and professors still feel confident using terms like "vegetative state" to describe a person with a brain injury who is non-responsive to the outside world.
Why?
Merck Manual for professionals defines vegetative state this way:
"A vegetative state is absence of responsiveness and awareness due to overwhelming dysfunction of the cerebral hemispheres, with sufficient sparing of the diencephalon and brain stem to preserve autonomic and motor reflexes and sleep-wake cycles. Patients may have complex reflexes, including eye movements, yawning, and involuntary movements to noxious stimuli, but show no awareness of self or environment. A minimally conscious state, unlike a vegetative state, is characterized by some evidence of awareness of self and/or the environment, and patients tend to improve. Diagnosis is clinical. Treatment is mainly supportive. Prognosis for patients with persistent deficits is typically bleak." (The bolding is theirs.)
On what basis do professionals make the assumption that they know everything there is to know about the brain and thus about the vegetative state, other than subjective observation that discounts the invisible communication between those who love the person and the person in the bed? Arrogant certainty deafens them to the reality being experienced by the person who cannot communicate visibly.
"But that moment, where you wake up after the stroke and realize you cannot communicate with anyone around you, and the fear you must've felt that something might happen to you as a result, must've been petrifying."
"I mean, it was . . . because I think communication is a basic human right, and there are people forgotten about."
The term "vegetative state" connotes that the human being lying in the bed before you is a vegetable, just a conglomeration of organs inside muscle and skin, no reason to believe those reflexes are anything more than nonsentient reactions to noxious stimuli. Yet here is Kate Allatt talking about being forgotten, about bringing herself out of internal awareness to tell the outside world, "I'm here!"
"Imagine you're lying in your bed thinking, feeling, seeing, hearing, assuming your head is pointed in the right direction, but you're completely powerless to give anyone a signal that you can understand. So inside your head, you're screaming, "I'm here! I'm here!" but no one is listening, because to everybody else, you appear to be in a completely vegetative state."
All around the world, there are Kate Allatts screaming inside their heads while doctors, confident the "vegetative state" tells all, insist there's no one there.
Angela Ronson responded to my post last week with much information on this topic. She wrote on her blog The Thoughtful Vegetable:
"I'm vegetative. I thought that typing out my answers would change my diagnosis. I thought wrong. The reason for my diagnosis only changed. First, I was vegetative because I did not talk or make any physical response to people I did not know.
When I started vocalizing, the doctor "did not understand me." I decided to rehab my hand so I could type it out. I knew how to rehab a hand enough to use it. I was an infant specialist years ago. I could at least rehab to a baby." (The emphasis is mine.)
There's "Ghost Boy":
And the Swedish man who had the horrifying opportunity to hear doctors discussing which of his organs to donate:
"I heard them tell my girlfriend and my relatives that there was no hope," Jimi Fritze, 43, told The Telegraph.
"I couldn't do anything. I could only see and hear. I couldn't move my body." (RIchard Orange, The Telegraph, 4 April 2014)
More and more of these stories are appearing, and it's long past time the medical profession began ditching the "vegetative state."
It's long-past time psychiatrists, in general, began using terms that describe brain states based on objective measures, like EEG, not ones based on subjectively observed symptoms.
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It's long past time that neurologists and psychiatrists use terms that connote we don't know, but we know that this is a human being worthy of the human right to life and so of having their brain regenerated.
This is true for many brain states, but only in ones where the term "vegetative state" is used does a subjectively based diagnostic label lead to killing an aware human being who's screaming inside, "I'm here! I'm here!"
I thought about what could replace it, given that subjective measures like the DSM-V are inappropriate, that objective measurement tools are still being improved upon and provide only the barest glimpse into the final frontier of the brain, and that consciousness is considered the "hard problem" by philosophers.
I propose a new term: invisibly conscious state.
This term connotes that this is a human being and that this human being's consciousness is invisible to the diagnostician. This term would hopefully lead physicians to adopt a humble, open-minded attitude to the person lying in the bed before them and to those loving ones who can communicate with them.
It may remind them the person has the human rights of being treated in a spirit of brotherhood—life and security of person, free from inhuman treatment (UN Declaration Of Human Rights).
Humility and an open mind are how we begin communication with an invisibly conscious person, and how we transform care from supportive to actively regenerating the brain.
Copyright ©2019 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.
