Traumatic brain injuries aren’t created equal.
Many patients once thought to be in unconscious vegetative states are actually minimally conscious, say experts, and they can recover over time.
But wrong diagnoses are rampant, according to studies.
In fact, researchers say more than of patients with traumatic brain injuries have been wrongly labeled as vegetative.
And that diagnosis hasn’t changed much in many years.
The message, say researchers, is that there’s hope for patients in minimally conscious states (MCS).
But first, the diagnosis must be correct.
“The potential is there to activate the circuits,” Joseph Fins, chief of the division of medical ethics at Weill Cornell Medicine and co-director for the Consortium for the Advanced Study of Brain Injury, told Healthline. “So some people can get better on their own. Their’s is a liminal state of consciousness.”
Signals of brain awakening are subtle and may be missed, though.
A minimally patient might reach for a cup or blink answers to questions.
But these actions may be done episodically, he said, which partly accounts for low diagnosis rates.
But the consequences for this misdiagnosis are serious, he adds.
These include denying patients the ability to recover slowly over years, get out of institutional care, and reconnect with their families.
So, Fins sees abandoning conscious people as a violation of their civil rights.
Vegetative vs. minimally conscious
MCS isn’t really a new diagnosis.
The term was coined in 2002.
Since then, there’s been lots of scientific research into the condition, said Fins, and agreement within the medical community that this is a real condition.
However, patients who’ve come back from severe brain injuries don’t remember anything about it, said Fins.
“Memory is one of the most fragile parts of brain vulnerable to trauma, stress, or disease,” he said. “So people don’t remember their experiences when they wake up.”
Even so, there are big differences between vegetative and minimally conscious states.
The vegetative variety can best be described as wakeful unconscious.
Karen Quinlan, who lapsed into a coma and ended up in a persistent vegetative state and spurred the right to die movement, is a good example.
But Fins likens MCS to a highway system that is more or less intact, while the vegetative state is broken up.
“The goal then in MCS is to make rehabilitation more like reeducation,” he said, since this is a fluid state.
For example, he explained, people with MCS can process language in their brains.
“They have the potential to recover and feel pain,” Fins said.
The trouble is that no one has created a medical code for this state, Dr. Nicholas Schiff, a professor of neurology at Weill Cornell Medical College, told Healthline.
So patients are lumped in with others in deep vegetative states.
“People are forcing the labels,” he said.
There are people in their 20s who are trapped in their heads, he said.
“Yet this is a biologically distinct state from vegetative,” he explained. “And seeing early signs can spur a better diagnosis.”
“People are told that patients aren’t responding to interventions,” Ford Vox, a physical medicine and rehabilitation physician at the Shepherd Center, told Healthline. “So insurers won’t pay for services. It’s a terrific ethical quandary about patients’ rights and what they’re owed.”
Blinking can be meaningful
The upshot is that this population has been ignored, Fins said, and don’t get rehabilitation because it’s complicated.
“There’s a presumption that once the brain is badly damaged, it can’t get better,” he said.
The truth, he said, is that the brain can be resilient and changes happen over time — sometimes over many years.
“New connections can be made between the neurons that still exist,” he explained.
Vox has seen patients transition into more consciousness several months after injury.
“So you can emerge and nobody might ever notice,” he said.
So getting the correct diagnosis is the first step to recovery.
“Using neuroimaging is still experimental,” Fins notes, but just talking to someone can activate the brain.
If MCS isn’t recognized, the physical body deteriorates, says Schiff. Bed sores or pneumonia can be problems.
“Soon this state will exceed anything acceptable to anyone,” he concluded. “But there hasn’t been enough interest in getting it to move faster.”