After years of opposition from disability advocates, more experts are beginning to question the validity of the “persistent vegetative state” (PVS) diagnostic label that paved the way for Terri Schiavo’s starvation death.
A Discover magazine article published online July 6 explained that PVS often fails to account for a broad swath of traumatic brain injury patients who are deemed to be “still in there” – a conclusion one science reporter called “haunting.”
Discover’s Kat McGowan examined the outcome of years of experiments by Dr. Joseph Giancino, director of rehabilitation neuropsychology at Spaulding Rehabilitation Hospital, and Nicholas Schiff, a Weill Cornell Medical Center neurologist, as they probed the distinction between reflexes and “real cognition” in patients who appear to have little communion with the outside world.
“These are human beings who seem to have lost their humanity,” Giacino told the magazine. “The question is, is that really the case?”
Several studies, one as late as 2009, have found that as many as 41 percent of PVS patients had some level of awareness, and the evidence keeps building.
Schiff called his first experience with an awakening – he discovered his very first PVS patient was speaking three years later – “truly surreal.” Spurred by that experience, he and Giancino examined more “PVS” patients. In one case, the team marveled as the neural activity of one man deemed minimally conscious “flared up” just like a healthy brain at the sound of his mother’s voice.
Another patient woke up abruptly after 19 years of minimal consciousness and began to speak fluently. Later, a scan found that his brain was sprouting new connections, something “nobody would have believed” possible with a decades-old injury without picture proof, according to one expert.
The scientists say the discoveries have opened an encouraging frontier for brain injury patients: one man left with nothing but “a huge shadow of fluid where neural flesh should be” after a severe car crash is now able to send emails, thanks to a system that interprets his head movements, the last voluntary action left to his body, McGowan reports. With the help of electrode stimulation, another minimally conscious patient improved so much he could tell his mother he loved her.
However, the bright prospects may be dimmed by prejudice against the disabled: Giancino reflected on a grim reaction he received at a “well-regarded major medical center” after he had given a presentation of his findings.
“The head of trauma thanks me and in a very jovial manner says, ‘In my day, the term for these patients was jellyfish.’ And he laughs and moves on,” he said. “What do you do with that?”
When one neurologist asked Schiff if neurologists, by giving a bleak prognosis for vegetative patients, have been “killing people,” McGowan writes: “Schiff does not directly respond, but the answer is almost certainly yes.”
“The implications of their work are haunting. It suggests that many of the estimated 250,000 to 300,000 or more people in this country languishing in bedrooms and nursing homes with disorders of consciousness are probably still ‘in there’ – still have some capacity to think and to feel and might, in a limited way, be able to rejoin the world,” writes McGowan.
Several cases have been documented of supposedly “vegetative” patients returning to consciousness after as many as twenty years, a fact frequently stressed by disability advocates such as the Terri Schiavo Life and Hope Network.
Bobby Schindler, Terri’s brother and founder of the Network in her honor, said Friday that the “PVS diagnosis needs to be eliminated by the medical community.”
“Not only is it highly flawed and unscientific in its diagnosis (misdiagnosed upwards of 50% of the time), but it is dehumanizing to the individual being labeled as a ‘vegetable,’” wrote Schindler on Facebook.
“More importantly and most disturbing however, is the PVS is being used as a criteria to kill those with cognitive disabilities as it was used to deliberately kill my sister, Terri.”
Terri Schiavo was diagnosed with PVS in 1991, paving the way for a court order forbidding her food and fluids and leading to her infamous death by dehydration, despite video and photos showing that she was alert and responsive.
In the Discover article, McGowan claimed the autopsy of Schiavo “proved that she could never have recovered” because her brain had shrunk dramatically. However, other experts have contested that conclusion based on the known status of Terri’s brain, which besides its size had remained “relatively preserved,” in the words of the doctor who performed the autopsy.