(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