Au contraire!
This fluidity makes diagnosis a challenge. “If a patient follows every command you give them, you know that,” says Dr. John Whyte, director of the Moss Institute and lead investigator on the zolpidem trial. “If a patient has never, ever followed a command, you know that too. But if you tell a patient to wiggle their finger, and they do it occasionally — which is the case for most of these folks — how do you figure out if that ‘occasionally’ means something or not?”
Whyte has spent his entire career trying to answer this question. His first job after his residency was at a facility with a large number of vegetative patients. While working there, he was struck by the amount of contention over diagnoses. For all their experience with this population, clinicians could not seem to agree on whether any given patient was actually conscious. Family members also argued, with one another and with staff, over the meaning of every wince, twitch and eye flutter.
It turned out that a lot of people — staff members included — were drawing their conclusions from pure coincidence. Whyte told me about one mother who insisted that her son would point down toward his feeding tube to indicate that fluid was leaking onto his stomach, causing irritation. “He did it while I was there,” Whyte says. “And she lifted his shirt and said: ‘See, doctor, there’s the liquid. He’s communicating with us.’ And I said: ‘How often do you look under there when he isn’t pointing like this? Never? Not even once?’ ” It was possible that the pointing corresponded to the leak, Whyte explained. But it was also possible that the leaking was constant and the pointing was random. There were countless other examples. “Behaviors would be exceptions if they happened at the wrong time, and evidence if they happened at the right time,” Whyte says.
To help eliminate this bias, Whyte developed what he calls the single-subject assessment, in which doctors design a set of tests specific to each patient’s idiosyncrasies to determine whether the patient is vegetative or minimally conscious. It is painstaking work, but the information it yields is significant. “Patients who achieve minimal consciousness early tend to have a better prognosis,” Whyte says. “And you can at least try to build a communication system with them, because you have a foundation to work from.”
I had heard about this before when I was doing online research. Two years ago, my sister, at 42, suffered a heart attack. She was down without a heartbeat and not on a respirator for somewhere between 15-20 minutes.
When they finally got her stabilized, the doctors insisted she was in a PVS. But I talked to her husband frequently, and he kept saying he was seeing signs.
One month to the day after it happened she said her first words when she asked for ice cream.
She is still not “all there” and perhaps never will be. She can be very lucid for periods of time and then just lose it and ramble off about something totally unrelated.
But she seems to have escaped the worst. Many patients in that condition are prone to violent episodes because internally, they know what they want, but physically or communication-wise, they cannot express it.
She was always a very positive and easy-going person so I am sure that makes a difference.
Time will tell. But the fact she can speaks and converse and move around shows that a good portion, if not most of her higher brain functions are still there.
She was one very, very, very lucky girl. The heart attack actually happened in the ER!