Having to stand by and witness the intentional death of a loved one is a helpless torture. Having most of the globe tuned in to your unimaginable situation exasperates the feeling even more.
I should know, since it was my family and I who tried to save my sister, Terri Schiavo, from being starved and dehydrated to death while the world watched.
People thought that Terri didn't know what was happening because they wrongly believed much of the media reports that said she was in a "persistent vegetative state" (PVS). But my family always knew that my sister was aware of what was happening, and now yet another new study reveals we were right.
The Lancet, a well-respected medical journal, recently published a groundbreaking study that shows that many patients claimed to be in a PVS are misdiagnosed. Further, the study proved that many of these patients have a much higher level of consciousness than otherwise thought.
Although these findings are certainly welcome, particularly to family members who care for their cognitively disabled loved ones and already know their loved ones are not in a PVS, they are not entirely unique. There have been several other studies revealing the same. In addition, many physicians have known for years that patients diagnosed to be in a PVS were, in reality, misdiagnosed.
The real question is why these understandings haven't caused us to rethink the morality of removing food and water from such persons.
In a society where resources and medical research are so great and have revealed so much in this area, it is time to realize that PVS is nothing but a political code word for a "candidate to euthanize" and should be eliminated. This "medical term" not only dehumanizes the cognitively disabled, but these findings only prove that it is broad, subjective and unscientific. Tragically it has emerged in our society as a death sentence waiting to happen, as it turned out to be in Terri's case.
Regrettably, Terri never was afforded any type of new exam. This was despite the fact that upwards of 40 medical professionals, some being the most prominent neurologists in the nation, believed that Terri was not in a PVS or could have been helped with proper diagnosis/treatment if given the opportunity.
My family begged the judge in my sister's case, George Greer, to permit further testing and therapy during the time Terri's case was awaiting appellate court hearings. Such testing could have only helped Terri, and yet Judge Greer consistently refused. Not even the autopsy was able to confirm whether or not Terri was in a PVS. This is at the heart of this issue. The desire to impose death on patients taints the judgments of those who refuse to understand the myths surrounding a diagnosis of PVS.
Since the inception of the Terri Schiavo Life & Hope Network, over 1,000 families have contacted us for help looking for some type of support or because they were going through a similar situation as we did. Indeed, a large number of these families were dealing with a loved one who was diagnosed with PVS and fighting to save their lives.
There is no mercy and compassion in starving a person to death. Some say this is a peaceful and painless way to die. This is contrary to Terri's last excruciating hours. And some in the media portrayed her death as "beautiful compassion." This is also patently false. Terri died a barbaric, painful and inhumane death. My sister suffered terribly and the look of desperation in her eyes those last days will always haunt me.
My family and many others knew that Terri was very much alive, alert and at times was extremely interactive. Where is the mercy and compassion in putting a human to death in a way we don't allow to happen to animals? Can anyone even imagine if it were acceptable to take our family pet and decide to starve and dehydrate it to death?
None of us deserves to be deprived of food and water, whether we have a brain injury or not. Additional studies like the one in The Lancet will continue to validate that those in a PVS are just as human as those of us who have all our cognitive capabilities. The capacity of the human brain and body to rebound is beyond our comprehension. We see this proven in real-life cases where a person suddenly wakes up and recovers after years of being considered "brain dead" or in a PVS.
Every life is precious and should be handled with great care and consideration, whether one's fate is being decided on a national scale or not.
Bobby Schindler is the executive director of the Terri Schiavo Life & Hope Network.
