Terri Schiavo suffered a heart attack in 1990 at age 26. As a result she had cardiac arrest and although she was revived the resultant lack of blood supply to her brain caused significant damage. For the next 15 years Terri remained in a persistent vegetative state (PVS), requiring a feeding tube for hydration and nutrition but able to breath on her own. PVS results from significant damage to both hemispheres of the brain. The more primitive and basic function in the deep parts of the brain and the brain stem may be intact, but the thinking part of the brain is too damaged to allow for consciousness.

Although there is nothing particularly interesting in the Schiavo case from a neurological perspective – PVS is not uncommon – in 2005 the case came to national attention. The story involved her husband, who wanted to remove her feeding tube and allow her to die, and her parents, who sought legal action to prevent the removal of her feeding tube. The conflict surrounding Terri Schiavo became a test case for the religious right’s support for right to life issues, the right of a husband to make life and death decisions for his comatose wife, the right of her family to intervene, and the role of the government in such decisions. Emotions ran high on all sides as the case touched on the right to life vs the right to privacy issue that remains very divisive in this country. A media storm ensued.

Somewhat lost in all the politics, however, were the medical facts underlying the case. Now a new study (the paper is not available without a subscription, so I linked to the press release) published yesterday online in the journal Neurology reviews the media coverage of the Schiavo case, focusing on the completeness and accuracy of the reporting. Not surprisingly, the study authors found the coverage to be wanting.

Dr. Éric Racine of the Institut de recherches cliniques de Montréal (IRCM) and experts from Stanford University, in California, and the University of British Columbia reviewed 1141 articles and over 400 letters to the editor. They found that only 1% of the articles defined persistent vegetative state, a point critical to the story. Dr. Racine also reports:

“In the course of our research, we were surprised by the amount of medical inaccuracies that these newspapers had published. Some journalists even wrote about Mrs. Schiavo’s reactions to specific words or expressions supposedly showing that she was conscious. “Our observations show that the press capitalized on the controversy to a large extent, and selling copies mattered more than delivering scientific information. Media coverage sustained myths and false hopes.”

They also found that 21% of reports indicated that there was hope of recovery. That was the very crux of the controversy. Someone who has been in a PVS for 15 years has no meaningful chance of recovery. Sixteen separate neurologists examined Terri Schiavo over the course of the court cases about her condition, and they all agreed, after extensive examination, that she was in a PVS. The only exception was Dr. William Hammesfahr. He said that she could recover, and that his special treatment could help her. By coincidence I had previously been asked by the state of Florida to give expert testimony regarding Dr. Hammesfahr’s special treatment, which I found to be completely pseudoscientific and even unethical. This is a separate story, but the end result was that the judge found Dr. Hammesfahr’s treatment to be substandard and ruled against him. But on appeal Hammesfahr’s lawyer argued that his treatment was “alternative” and under a recent Florida statute “alternative” treatments could not be held to a standard of care.

We can suffice to say that Hammesfahr’s opinion was an outlier and there are reasons not to give it any credence whatsoever. This did not stop a major news outlet (Hannity and Colmes on Fox) from choosing him to be the source of neurological opinion in the case.

From a political perspective, the Schiavo case clearly indicated that the majority of Americans favor privacy in such issues over government intrusion. The Congress overstepped their bounds in trying to meddle in the case, and the conventional wisdom is that the affair ended the presidential aspirations of Senator Bill Frist. He heavily supported the right-to-life side of this controversy. But worse, he is also a physician, and he announced that he reviewed a video tape of Terri Schiavo and concluded that she was not in a PVS. It was generally seen as crass political maneuvering to use his status as a physician to bolster his political opinions – especially when his medical opinions turned out to be completely wrong.

From the perspective of the media, this new study supports what many of us subjectively felt – that the media focussed on the controversy and did not adequately give the scientific/medical facts around which the case turned. Many outlets even gave false, inadequate, or misleading information or relied upon cherry-picked experts to support the minority opinion. Sometimes this was just bad journalism, but often the scientific errors supported the politics of the writer or news outlet.

The neurology of the case, in the end, was not truly controversial. It was clear that Terri Schiavo was in a PVS and had no hope of recovery. The parents and others made a common error is assessing her condition. In a PVS people will still have sleep-wake cycles, they will open their eyes, have roving eye movements, turn their head and sometimes grimace or move. These actions, however, are random and not accompanied by any detectable conscious thought. It takes careful and trained observation to see that the actions are random and not directed. Casual, untrained, or emotional observation, however, typically will seek out random correlations and then confirmation bias will result in the false conclusion that the actions are conscious or are reacting to the environment.

In the Schiavo case hours of video was reviewed to find a couple of instances when Schiavo happened to turn her head when someone called her name, or when she seemed to be looking toward a visitor. However, the neurologists examined and viewed her for hours and found that her actions did not correlate with any stimulation – they were random. The occasional correlation of an action with a stimulus is just chance.

This is a common experience for neurologists. Family members commonly over-interpret such random movements, or even subconscious reflexes. It is the job of the neurologist to interpret the exam clinically, without emotion, and to explain their findings to the family in order to give them accurate information with which they can make their very difficult decisions.

And that is the final lesson in all this. There were emotional, personal, societal, and political decisions to be made in this case – and the science alone was not enough to resolve these important issues. But such questions should be informed by accurate and unbiased science. What often happened instead was that the science was distorted to suit the politics.

At least in this case there was significant closure. Schiavo’s husband, Michael, ultimately won the court battle and had her feeding tube removed. She passed away on March 31, 2005. The results of her autopsy were reported several months later – it showed that her brain weighed only half of what it should have weighed. She had irreversible catastrophic brain damage compatible with a persistent vegetative state, and incompatible with any conscious awareness or hope of recovery. (In a shocking display of the power of denial, Schiavo’s parents refused to accept the findings of the autopsy.) This was consistent with the consensus of clinical neurological opinion (putting aside the one self-promoting quack).

The entire affair should stand as a cautionary tale. When a public controversy rests upon an empirical scientific claim, it is best to listen to the consensus of scientific opinion so at least the public discussion can be well informed. It is perilous to give equal weight to a dubious minority opinion, to cherry-pick facts and opinions that support one’s politics, or to listen to the scientific opinions of politicians or those with a significant personal or ideological interest.

These lessons apply to many science-based controversies still relevant today.