Kill the Diagnosis, Not the Patient

With all of the current debate in the United States over President Obama’s proposed health care legislation, people seem to have firmly chosen sides—based on their political leanings and not necessarily the actual content of the bill, HR 3200.

In a nation that professes a profound reverence for the lives and wellness of its citizens, it is no argument that our system of healthcare delivery fails many patients and that insurance companies and health maintenance organizations have long dodged the bullet of responsibility when they’ve rationed care or denied coverage for certain types of treatments and therapies. That rationing and denial of coverage is most rampant among our most vulnerable citizens—when such treatments and therapies are essential for daily living. And now the government wants in.

Though our current system is in serious need of repair, many fear that a government-run system could open the doors for bureaucrats to make decisions in life and death for patients whose diagnoses are less than promising. This becomes most alarming when certain diagnoses can equal a death sentence for someone who is helpless to save themselves.

On September 20, 2009, Scientific American published a report titled “Conditional Consciousness: Patients in Vegetative States Can Learn, Predicting Recovery.” Citing a study published by Nature Neuroscience, the report states that patients who were previously diagnosed as being in a vegetative state were able to relearn behaviors—suggesting cognition in people who had failed more traditional tests for cognitive function and awareness.

Perhaps the most important piece of Scientific American’s article is the following, attributed to the study’s senior author and the director of the Integrative Neurosciences Laboratory at the University of Buenos Aires, Mariano Sigman:

… current designation of either vegetative or minimally conscious did not determine how well patients learned. Some of those who were minimally conscious didn’t learn as well as some who were classified as vegetative and vice versa. “I think there’s some consensus that there is a [need for] revision in the way these patients are classified,” Sigman says.

Since the high-profile cases of Karen Ann Quinlan, Nancy Cruzan and my own sister, Terri Schiavo, the public has been encouraged to accept the definition of persistent vegetative state (PVS) as an accurate and reliable one. However, evidence is growing that the diagnosis fails in many cases.

PVS is an oft-used term describe a patient who has lost all awareness of surroundings and self, displays no purposeful behaviors or intentional movements and has no capacity in higher brain functions such as decision making or problem solving.

Because the diagnosis itself has been used as justification for the removal of ordinary care from incapacitated patients (thereby causing death or dehydration and starvation in otherwise healthy patients), it merits strict scrutiny by the public and the medical community.

Instead, we’ve been conditioned to believe the accuracy of this diagnosis, out of hand, and have been told that removing the basic provision of medically-assisted food and fluids (causing the patient’s death) is kinder than continuing to care for and love the disabled person.

A study published in BioMed Central Neurology indicates that doctors do not have the tools to diagnose the condition with certainty. A new tool, the JFK Coma Recovery Scale, is a barrage of more than 20 clinical tests that is designed to give doctors better insight into the cognitive abilities of their patients. Yet, over 40 percent of patients diagnosed PVS are not, in fact, in a persistent vegetative state, according to the Royal Hospital for Neurodisability in London.

Most patients, however, do not receive the full battery of this type of testing and are, instead, subjected to a bedside diagnosis—with the opinion of the doctor bearing the ultimate weight.

Why, then, is a diagnosis so subjective and precarious used as the catalyst for denying human beings the basic provisions of food and fluids until they die? Prejudice may be a determining factor.

Indeed, the term itself (persistent vegetative state) is utterly dehumanizing and seems to suggest that Homo Sapiens magically change into plant life the moment their lives are touched by neurological insult or cognitive disability. Wouldn’t “cognitively disabled” be a better, more accurate, term?

Yet, the term PVS has been part of the language for nearly 40 years and is accepted by laypersons as being an apt description. It is, in every sense and on every level, intellectually dishonest to label a human being as a vegetable. It’s also dangerous.

CNN’s crime bureau recently reported that people with disabilities are 50 percent more likely to be the victims of violent crime than able-bodied individuals. People with disabilities (be their challenges physical or neurological) appear to be easier targets for discrimination, injustice and a wide range of indignities.

Our culture has grown to accept such things and we are quick to look the other way when the offense is against someone who is unable to fend for themselves. I cannot explain the dynamic except to say that we may find it difficult to envision ourselves in similar predicaments.

To be clear: there is no indignity more final and brutal than forcing a living person to die the death of dehydration and starvation.

Try to imagine the torture my sister endured in the last two weeks of her life. Being unable to defend herself, very likely aware of precisely what was happening and having absolutely no ability to escape it.

For nearly two weeks, Terri was denied food and fluids. Not so much as an ice chip was given to her. It was pitiful, it was barbaric and it was clear that she was made to suffer. When my sister expired, she was a shell of her former self.

It is because of the suffering my sister and others endured that I believe the PVS diagnosis must be either reevaluated or completely abolished. With so many medical and neurological professionals admitting that there are inaccuracies and with the diagnosis being a death sentence, it is time to rethink disability and the way we regard it and our fellow human beings.

Over 40 medical professionals submitted affidavits to the circuit court, stating that the evidence they reviewed strongly suggested that Terri may have been misdiagnosed. It was not enough to sway Judge Greer that my sister was a person worthy of living.

No innocent person should ever be denied the basic necessities of living. Irrespective of your station in life, your physical abilities, your cognitive abilities or your personal situation, I believe you have a right to live your life and a reasonable expectation to be treated like a human being.

After witnessing my sister’s suffering, I know in my heart that we’ve taken the wrong path and that we’ve done so based on oftentimes flawed intelligence. Certainly the report that patients previously diagnosed as PVS are actually capable of learning should give pause to anyone with a basic sense of decency.

Likewise, it should be a call to table court-ordered removal of ordinary care from cognitively disabled patients.

In the United States alone, more than 50,000 people live with profound neurological or cognitive disabilities. They live, quite literally, at the pleasure and by the mercy of others. There is the very real possibility that a large number of those individuals have been misdiagnosed yet, they are living in the crosshairs.

Wouldn’t reasonableness and a simple sense of humanity dictate that we stop forcing people to die miserable deaths, based on a diagnosis with such a tremendous margin of error?

It becomes a matter of what we really understand about the human brain, its resilience and the proper societal response to people with needs. We can choose to ignore the human condition, ignore the science and sentence innocent people to death. Likewise, we can choose to view medicine as an art—oftentimes brilliant and sometimes inconclusive.

No diagnosis should ever be used as a catalyst for forcing death on an innocent person. We can do better than that. We need to.