This article appeared in CNS NEWS yesterday.
During my family's battle to save my sister Terri Schiavo from death by dehydration, a tremendous amount of debate raged over whether or not she was in what the medical profession refers to as a persistent vegetative state (PVS).
Indeed, the PVS diagnosis was used as one of the deciding factors in whether my sister should live or die. It was the core catalyst in the court ordering the removal of Terri’s food and water.
When Terri’s husband first petitioned the circuit courts to remove her sustenance, my family was naive about PVS and what the diagnosis actually meant, and could not believe a court would ever order her food and water withdrawn. As the battle over my sister’s life progressed, however, we learned – the hard way.
The more anecdotal testimony we heard about the diagnosis of PVS, the more my family was convinced that Terri simply didn’t fit the profile and was never PVS. We also suspected such a diagnosis (typically made at the bedside) was seriously flawed.
This became very obvious by the way Terri interacted with my mother, not to mention the videos which clearly showed that Terri was able to track objects and follow simple commands.
I was oftentimes rather astonished at the number of different and opposing conclusions I heard from neurologists, physicians, speech therapists and so many other medical professionals who tried to determine whether or not Terri was in a PVS.
This is why a recent study published by the New England Journal of Medicine, regarding findings of awareness in patients previously diagnosed in a PVS, may be one of the most important to date.
The Journal’s report, released on Feb. 3, revealed that some patients who were believed to be in a PVS were actually able to understand and communicate. Through the use of functional magnetic resonance scanning (fMRI), researchers in the United Kingdom estimated that a percentage of those patients suffering from profound brain injuries possessed the capacity to comprehend and communicate in limited ways.
Though the results of this study may bring new hope to patients with severe brain injuries, the latest findings also suggest that the PVS diagnosis may be more flawed than previously believed. Already, documented research has brought into question the veracity of the PVS diagnosis. The New England Journal of Medicine’s February report may be something of a call to action.
Indeed, it is bittersweet for my family when we read such findings that question the PVS diagnosis. It exonerated the courageous individuals who placed their careers and reputations on the line to voice opposition to my sister’s court-ordered dehydration.
The doctors and neurologists who examined Terri and evidence presented in the legal battle have often been dismissed as “quacks” for suggesting Terri may have been aware, cognizant and functional. For them, such new findings must weigh particularly heavy on their hearts.
Despite the New England Journal of Medicine’s report, most in the mainstream media obstinately refused to admit that Terri’s death was a mistake.
Perhaps that is because they have a stake in the story: Throughout the legal battle, most of the media repeatedly ignored or glossed over the dozens of affidavits from some of the most prominent neurologists and medical professionals in the nation, stating Terri may have been misdiagnosed.
Many pleaded for the judge, George Geer, to permit similar new brain scanning technology to better determine Terri’s true neurological condition. They, along with my family, were inexplicably refused.
As we saw in Terri’s life and death, what these laws have created is a hostile and often fatal set of circumstances for non-dying patients who live with profound brain injuries and cognitive disabilities – based on tragically suspect diagnoses.
It is utterly vital for disability rights and pro-life advocates to lead the charge that demands our legislators enact appropriate laws to protect the life and liberty interests of vulnerable persons.
It is also because of the results of this latest study and the traditionally high failure rate in the PVS diagnosis that we need to stop using it as a guideline to kill those in these so-called PVS conditions.
There are many in the legal and medical profession who choose not to see what we saw in Terri’s behaviors and what these imaging studies reveal about the human brain. It is incumbent upon all of us to ensure that the lives of vulnerable people are not needlessly ended by flawed diagnostic practices, careless legislation or the idea that a person with a disability must prove themselves worthy of life’s most ordinary needs: food and water.