(Thanks to Denise Karuth for the heads up on this)
“Silent Minds” by Jerome Groopman is in the latest edition of the New Yorker magazine. It’s a summary of the research into the consciousness of people labeled with persistent vegetative state (PVS) and minimally conscious state (MCS). Much of it will be familiar to readers of the NDY blog and our old website. Groopman provides a pretty comprehensive overview of the research over the past ten years, but the way he states the research is odd. The way in which he states the research in the late 1990s suggests that the problem at the time was misdiagnosis of consciousness when there was none, rather than misdiagnosis of PVS in a person who was conscious:
According to several American and British studies completed in the late nineties, patients suffering from what is known as “disorders of consciousness” are misdiagnosed between fifteen and forty-three per cent of the time. Physicians, who have traditionally relied on bedside evaluations to make diagnoses, sometimes misinterpret patients’ behavior, mistaking smiling, grunting, grimacing, crying, or moaning as evidence of consciousness.
That is really misleading. One of the studies he’s referring to here is the 1996 study by Andrews et al published in BMJ. Here are the results from the study:
Of the 40 patients referred as being in the vegetative state, 17 (43%) were considered as having been misdiagnosed; seven of these had been presumed to be vegetative for longer than one year, including three for over four years. Most of the misdiagnosed patients were blind or severely visually impaired. All patients remained severely physically disabled, but nearly all were able to communicate their preference in quality of life issues–some to a high level.
But that’s not all. The article makes reference to Terri Schiavo, a debate in which her life or death was on the line:
A neuroscientist showed me a video on the Internet of Terri Schiavo, the Florida woman who spent fifteen years in what most doctors agree was a vegetative state—tests revealed almost no activity in her cortex—and whose death, in 2005, provoked fierce debate over the rights of severely brain-damaged patients. (Schiavo died after the Supreme Court rejected her parents’ appeal of a judge’s decision approving her husband’s request that her feeding tube be removed. An autopsy showed extensive brain damage.)
In spite of the reference to Schiavo and the life-and-death nature of the debate that surrounded her, Groopman proves the “elephant is still in the living room.”:
“These people with brain trauma are out of our view,” Joseph Fins, an internist and medical ethicist at Weill Cornell Medical College, in Manhattan, and a member of the Mohonk group, told me. “We ignore them, and we sequester them in places where we can’t see them, usually in nursing homes.”
If you’re thinking that maybe Fins or Groopman might get to the issue of people with brain trauma who end dead after having been “written off” and get their feeding tubes withdrawn, you’ll be disappointed. The article maintains the careful and consistent avoidance of the implications this research could have in terms of “pulling the plug.”
Given the publicized “rush to judgment” cases of Haleigh Poutre, Jesse Ramirez and Jill Finley, isn’t it about time we started having that discussion? –Stephen Drake
Another person who couldn’t get her comment through asked me to post this for her:
You write: “he way he states the research is odd.”
That’s just what I thought when I read his paragraphs scattered throughout on Terri Schiavo.
It’s what he didn’t say that interested me. For example, what I would like to have read about was whether Terri in fact got to have all the kinds of tests that he writes about other folks getting with this research.
I would like to have seen a paragraph or two discussing whether or not Terri was able to get all this stuff.
I believe not; I believe that’s the stuff Michael wouldn’t let her have. But that is not mentioned — carefully not mentioned, I think.
Looking at the sentences in which Schiavo is mentioned, a perceptive reader might discern the mark of an editor ensuring that the Schiavo sentences were structured in such a way as to not raise the Terri Schiavo ghost again. Editors are truly gun-shy about what happened in this country with the public media consumers over the Schiavo case. I don’t think editors understand it; although they in fact caused much of it, they don’t want to go there again because of the drubbing they got from all parties (except disability folks, whom they simply dismiss as part of The Religious Right). They’re just plain scared.
So I think Groopman and/or his editors knew that 1) he had to mention Schiavo, or there’d be letters asking “why wasn’t she mentioned?” (in other words, it would look like a badly-edited story, leaving out an essential part of the brain-damaged people story). But 2) he had to do it in such a way as to deflect interest from her, sort of a “that’s in the past” kind of approach.
I think that editing was done quite consciously. I doubt there’ll be any Schiavo letters to the editor in the New Yorker.
My simple question though, remains unanswered: DID in fact Schiavo get the kinds of tests he writes about — and, if not, isn’t it true that the statement that Schiavo’s brain post mortem showed vast deterioration etc (“nothing there,” as I think was said) would perhaps also be true for some of these folks who they are discovering do have some brain activity? –Mary Johnson