Re-Defining My Life Away: Turning PVS Patients Into Non-Persons

Bioethics   |   Steven Ertelt   |   Oct 1, 2007   |   9:00AM   |   WASHINGTON, DC

Re-Defining My Life Away: Turning PVS Patients Into Non-Persons Email this article
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by Laura Echevarria
October 1, 2007 Note: Laura Echevarria is the former Director of Media Relations and a spokesperson for the National Right to Life Committee and has been a radio announcer, freelance writer active in local politics. She is a new opinion columnist for

In the September 25th issue of the online magazine Salon, neurologist Robert Burton takes issue with an important—and to most people encouraging—article that appeared in the Archives of Neurology. The title of Burton’s piece suggests the direction he is headed: “The Light is On, But is Anybody Home?”

The former chief of neurology at Mount Zion-UCSF Hospital and the author of "On Being Certain: Believing You Are Right Even When You’re Not," Burton is writing a series for Salon on the human brain.

The Archives of Neurology article questioned the received wisdom about patients diagnosed to be in a so-called persistent vegetative state (PVS). To the amazement of researchers, the brain of a woman, the victim of a car accident and said to be in a PVS, responded in a manner indistinguishable from fully conscious volunteers.

Lead researcher, Adrian Owen at the Medical Research Council Cognition and Brain Sciences Unit in Cambridge, England, told the Washington Post, "It was an absolutely stunning result," he said, adding, "We had no idea whether she would understand our instructions. But this showed that she is aware."

The then-23-year-old woman had been asked to imagine herself playing tennis or walking through her house while researchers conducted a fMRI to determine how responsive she was to these suggestions. (While MRIs and other machines can show doctors structural brain injuries, to actually see the brain in operation requires more advanced imaging called a functional MRI or fMRI)

“Brain regions involved in language, movement and navigation, which would be active when someone was playing tennis, wandering around a building, or imagining doing so, lighted up in ways that were ‘indistinguishable’ from those in 12 healthy people," according to the Post. The researchers reported that the fMRIs “confirmed beyond any doubt that [the patient] was consciously aware of herself and her surroundings, and was willfully following instructions given to her, despite her diagnosis of a vegetative state.”

You can imagine the implications for patients who, like Terri Schindler Schiavo, have been diagnosed to be in a PVS. They routinely are given only the most modest care and, as the case with Terri, can be starved and dehydrated to death.

Burton has little use for the Owen et al. study. The study’s “conclusions are not beyond a doubt,” he wrote. “There are plenty of questions about whether this young woman is conscious and capable of choice.”

Burton goes on: “Are we now to believe that an fMRI can tell us the level and nature of a patient’s consciousness even when the patient can’t respond? Putting aside for a moment the very considerable questions of fMRI methodology, and interpretation, are we ready to accept technology as the final word in assessing mental states?”

Is this where we’re going? Are we going to declare that only individuals who are self-aware AND capable of making conscious decisions AND able to communicate these decisions with ease are worthy to live?

What we know about the human brain could fit in a thimble compared to what we don’t know. I suspect people like Burton eagerly grasp anything that supposedly supports their position–that individuals declared to be in a PVS are unresponsive—but question the science when it challenges the core of their argument.

Terri was severely disabled but alive. Her right to life was vigorously defended by her parents and her siblings. She died not because of a terminal illness or any other natural cause but because food and water were withheld from her for 13 horrible days.

Terri’s life was taken from her because she could not communicate. She died because some saw her life as unworthy to be lived.

What one doctor diagnoses as PVS another doctor will conclude is an example of a minimally conscious state while still a third will deem the patient to be semi-conscious. The diagnosis can vary from patient to patient and doctor to doctor. Given how little we know about human consciousness, and given the studies by experts such as Dr. Owen, does it really make sense to make subjective opinion the basis for life and death decisions?

That’s what happened to Terri. Her diagnosis was rooted in a subjective assessment colored by a view that gives greater human value to those who are “normal.”

Ironically, Burton insists that this study gives false hope to parents and relatives of accident victims because it doesn’t change the diagnosis or the chance for recovery.

Burton writes, “I cannot imagine a worse medical nightmare than being told that a clinically unconscious spouse or child has been shown on a fMRI to have an active imagination and substantial self-awareness, especially when the findings don’t alter the grim prognosis or substantiate the value of greater rehabilitative efforts.”

I can.

A court system that decides that your semi-conscious daughter is no longer worthy of life because she is allegedly no longer “self-aware.” Her food and water are order to be removed and she dies an agonizing death nearly two weeks later. That, by far, is a worse nightmare.