CAMBRIDGE, England — When a Belgian-British research team began to suspect that many brain-damaged patients are misdiagnosed by medical practitioners, they used brain scans to establish two-way communication with a significant number of patients.
The findings were reported recently in The New England Journal of Medicine.
Though there are differences between the study group and the case of Terri Schindler Schiavo, the American woman starved and dehydrated to death by court order in 2005, Catholic ethicists and, indeed, Schindler Schiavo’s own family say the study raises similar ethical issues about the value of human life.
The study is the work of the Impaired Consciousness Research Group at Cambridge University. Its aim is to improve treatment of those who have been misdiagnosed as vegetative.
“There currently exists a high rate of misdiagnosis,” the group’s website declares, blaming this on the wide variation in diagnostic techniques and poor training.
Two teams at Cambridge and Liege universities tested 54 patients, 23 of them previously diagnosed in the vegetative state with no physical response to external prompts, and the rest classed as minimally conscious, meaning they intermittently could respond with blinks or twitches.
Led by research leader Adrian Owen of Cambridge University, they used magnetic resonance imaging to find four of the 23 patients diagnosed as vegetative, or 17%, responded to biographical questions (“Have you been to the United States? Is your name John?”) with brain activity identical to that of a healthy control group.
“We were astonished when we saw the results of the patient’s scan and that he was able to correctly answer the questions that were asked by simply changing his thoughts,” says Owen. “Not only did these scans tell us that the patient was not in a vegetative state, but more importantly, for the first time in five years it provided the patient with a way of communicating his thoughts to the outside world.”
Until now, gauging the degree of brain damage and consciousness has relied on physical signals, a method which cannot distinguish between those who are unconscious and those who, though conscious, lack motor controls. While the current research allows only yes and no answers, the study group hopes that patients will eventually be able to communicate feelings too, as well as to give instructions and state preferences.
Team member Dr. Martin Monti suggests that “this technique could be used to address important clinical questions. For example, patients who are aware, but cannot move or speak, could be asked if they are feeling any pain, allowing doctors to decide when painkillers should be administered.”
The results were quickly related to the Terri Schindler Schiavo case, with The New York Times leading the pack in declaring that the study does not “relate to victims of oxygen depletion like Terri Schiavo.” The Times also labeled the 17% positive finding a “rare” occurrence. Commented Terri’s brother, Bobby Schindler, of the Terri Schindler Schiavo Foundation, “Yeah, it was amazing how there was this rush to disassociate these findings from Terri.”
Schindler said the Cambridge-Liege study showed that diagnosis of brain damage and the persistent vegetative state was often inaccurate. “This will maybe help everyone see these patients as real people,” he said. Schindler emphasized that regardless of the degree of brain damage or activity, “these are human beings, and all deserve to be treated with dignity.”
John Brehany, executive director of the Catholic Medical Association, a group that seeks to “uphold the principles of the Catholic faith in the science and practice of medicine,” told the Register he hopes “the study would change the cultural mindset about the so-called vegetative state. These people are not dying and are not near death. But there is a popular view that they are, and that therefore we owe them nothing. That we don’t owe them antibiotics, we don’t owe them food and water, and we don’t owe them the support of any life-sustaining technology.”
As well, said Brehany, the research “should enable and encourage us to do more for them.”
Father Tadeusz Pacholczyk of the National Catholic Bioethics Center in Philadelphia praised the Cambridge-Liege study for revealing that “much more was going on hidden beneath the surface than we imaged.”
He hoped that “the ordinary Catholic in the pew” with a relative in the hospital in a “non-responsive state” would be encouraged by the study results to pay more attention to a disabled parent or sibling.
“Knowing that they are or could be aware, I might turn off the TV on the wall when I came into their hospital room. I might talk quietly to them or pray.”
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Not everyone took such a positive message from the study. Dr. Joseph Fins, a medical ethicist from Weill Cornell Medical College, suggested communication with people so severely impaired would enable doctors to offer them the choice of euthanasia.
Countered Father Pacholczyk: “A comment like that is very indicative of the state of the culture. There is a presumption against life.”
In a related development, U.S. Army researchers recommended soldiers be brain scanned before going into combat zones so they can be tested for brain damage when they return. According to Joy Hirsch of Columbia University, a partner in the Army’s study, “Oftentimes in traumatic brain injury patients have symptoms of injury, but the physical evidence is not obvious.”
Steve Weatherbe writes from Victoria, British Columbia.