It’s never pretty to see journalism transformed into propaganda, especially when you’re the one who wrote the journalism. I recently did an article for the New York Times Magazine about the grey zone between coma and consciousness. The National Right to Life web site then posted a long “News & Views” piece by one Dave Andrusko that pretended to recount my article. It was annoying enough to see careless mistakes–adding quotation marks to a passage from the article, so as to put it into the mouth of a doctor, for example. But it was really unpleasant to see my article distorted to serve a political purpose.
Here’s some background. The National Right to Life Coalition is opposed to witholding care from people with chronic, severely impaired consciousness. Karen Ann Quinlan’s parents went to court for the right to take her off a ventilator in 1976; since then, families have won the right to have feeding tubes withdrawn from patients. Currently there’s a case in Florida over a woman named Terri Schindler-Schiavo, whose husband wants her care terminated.
My article was primarily about scientists who are doing basic research on the biology of consciousness, trying to figure out what’s going on in the brains of people who cannot tell them anything about their own inner life. In some cases, people with seriously impaired consciousness–who cannot talk, who can barely follow a command to blink an eye–turn out to respond to language and other stimuli with brain patterns that are surprisingly like those of conscious people. It might even be possible some day to give them drugs or electrodes to help them become a little more conscious.
In retelling this story, Andrukso of the National Right To Life Coalition snipped up the story and turned it into a collage to suit their agenda. And in the process, he spread some serious misinformation that could confuse families and cause them unnecessary grief.
In the Times article, I describe the spectrum of states that exist below the level of full consciousness. If you get in a car crash, you may come into a hospital in a coma. In other words, your eyes are closed and you have no signs of consciousness at all. If you survive for a few weeks, you may come out of the coma but still not be conscious. Your eyes open and close in a wake-sleep cycle, you may move your eyes, you may squeeze someone’s hand. But that’s about it. This is known as a vegetative state. (VS) You may stay in this state for the rest of your life–in a chronic vegetative state, in other words. Or you may begin to show more signs of consciousness. If you show signs of consciousness that are unreliable–touching your nose once on command and then not touching it in later examinations, for example–then you may be diagnosed as being in a minimally conscious state (MCS). From MCS, you may gradually show more reliable signs of consciousness until you recover fully, or you may stop at MCS for the rest of your life.
The doctors I portray have done two different studies. One they did on chronically vegetative patients, some of whom showed strange behaviors–like shouting a curse word every couple days in one case. In those studies they found that isolated parts of the cortex are still active in some patients, like fragments of mind. The more recent study (still ongoing, actually) is on MCS patients. In response to the sound of a familiar voice or a scratch on the arm, the brains of these patients become active in much the same way conscious brains do. And yet, between these responses, their brains use less energy than someone under full anesthesia. It suggests a real biological difference between chronic VS and MCS, and hints at some ways to bring more awareness to people with MCS (a few hundred thousand Americans are in MCS, by the way).
Here’s what you get in the National Right to Life piece: MCS supposedly “identifies people who are in a condition somewhere between a pvs [persistent vegetative state] and a coma.”
That’s like saying 3 is somewhere between 1 and 2.
By mixing up the differences between MCS and VS, Andrusko performs a sleight of hand with the results of the scanning work, making it seem as if vegetative patients actually have these remarkable reserves of mental activity. And then comes the political twist: “With the Zimmer article,” he, “we can hope that the rag-tag army of family, friends, and volunteers who have stood by Terri Schindler-Schiavo has been provided with some reinforcements.” And he then adds, “How ironic that it should come from the New York Times!”
I see another irony in all this. It is absolutely untrue that people accurately diagnosed in chronic vegetative states–who have not shown signs of consciousness for years–have shown any evidence of consciousness in brain scans. Only those in MCS do. The distinction is crucial–particularly because in the past some people with MCS may have been misdiagosed as being in a vegetative state.
I’m not writing this to attack the National Right to Life Coalition for their political positions. Frankly, in the narrow confines of a blog, I don’t even want to get into the vastly complicated issue of withdrawing care from these patients. (Except to point out that so far, the courts have refused to come down in favor of withdrawing care from MCS patients when their wishes were not clearly stated before they lost consciousness.) But shuffling facts to suit your political needs–particularly when it concerns the most agonizing experience a family could ever go through–is pretty awful.
I’m reminded of Mark Twain’s reaction to seeing a ridiculous translation of one of his stories into French. “I think it is the worst I ever saw,” he wrote, “and yet the French are called a polished nation. If I had a boy that put sentences together as they do, I would polish him to some purpose.”