Theresa Schiavo's tragedy and ours, too

In March 2005, the tragic illness and death of Mrs. Theresa Schiavo was a staple of print and broadcast media in the United States. She died at age 41 on March 31, 2005, 15 years after suffering an hypoxic-ischemic brain injury during an at-home cardiac arrest that left her in a vegetative state, and 13 days after the judicially approved removal of her feeding gastrostomy tube.¹ Her sad case was noteworthy for ubiquitous media coverage of the family dispute over her treatment, the intense political action that was generated on both sides of the debate, and the unprecedented, unpopular,² and unconstitutional³ legislative intervention by the Florida legislature and United States Congress.

Many print and broadcast media outlets chose to sensationalize the dispute over her treatment, pitting her husband who sought to have her feeding tube removed (which he claimed was in accordance with her previously stated wishes) against her parents who fervently wished her feeding tube to remain. A second area of dispute was whether she was in a vegetative state or whether she showed signs of awareness. Many media outlets interviewed various “experts” who creating a spectacle that some analogized to reality television. Thoughtful observers were appalled by the grotesque invasion of her privacy and saddened by the indignity of airing the vicious dispute over her treatment among those whom she loved.

A second feature hyped by the media was the politicization and polarization of the opposing sides. The fundamentalist Christian right wing framed it ideologically as a Manichean “culture of life vs culture of death” analogous to the societal dispute over legalized abortion.⁴ Polarization made it difficult for impartial commentators on medical or scientific issues to remain neutral and not be forced into one of the opposing camps. At a hearing of the United States Senate Health, Education, Labor & Pensions Committee on April 6, 2005, to discuss her case, in which I testified on behalf of the American Academy of Neurology, this political aspect of the battle was transparent.

The findings of Eric Racine and colleagues⁵ in this issue of Neurology® are important to understand how the media accounts of her case shaped public opinion. They found that articles published by print media outlets frequently contained scientific inaccuracies, inconsistent diagnostic and descriptive terminology, mismatches between the descriptions of her state and the medical terms used to characterize it, inaccurate prognoses, an inability to distinguish expert opinion from diatribe, and emotionally or politically charged language misleadingly describing end-of-life care. Sadly, media attempts to define and explain disorders of consciousness were infrequent.

Perhaps most influential in galvanizing public skepticism over her diagnosis of vegetative state was the repeated broadcasting of an edited videotape of Mrs. Schiavo provided by her parents. Most viewers had no idea that patients in a vegetative state can move and have open eyes when awake. One neurologist who examined her alleged that the editing of the tape was contrived to erroneously suggest she was consciously following a balloon with her eyes and therefore not in a vegetative state.⁶

Many media outlets failed to clarify that trial court Judge Greer's ruling that she would not wish to have a feeding tube (later upheld in state and federal appellate court decisions) was based on exhaustive hearings in which the testimony of numerous friends and relatives as well as various expert witnesses was heard and weighed. In issuing his ruling, Judge Greer rated the evidence that she would not wish continued gastrostomy tube feeding as “clear and convincing.”⁷ Some media also provided exaggerated accounts of suffering following removal of a feeding tube. These descriptions had political overtones and did not comport with contemporary palliative care experiences.¹

But the most serious media shortcoming was squandering the opportunity to educate the public about disorders of consciousness and end-of-life care. The power of the media to mold public opinion imparts a duty for them to conduct public education.⁸ During March 2005, they had the public's rapt attention and could have provided the necessary background for people to understand these complex issues more clearly. Some responsible media outlets did attempt to educate readers, viewers, or listeners but many treated the dispute as entertainment.

Media shortcomings in reporting the Schiavo case were not unique. In a study of the accounts of brain death in articles published in 2005 by The New York Times, Laskowski and colleagues found that in 62% of the articles in which brain death was mentioned, it was discussed incorrectly or misleadingly, causing readers to conclude that a brain dead person remained alive.⁹ A study of television dramas depicting in-hospital cardiopulmonary resuscitation found a grossly unrealistic success rate.¹⁰ A study of the depiction of coma in motion pictures showed frequent misrepresentations, particularly the “Sleeping Beauty” sudden awakening from coma to completely normal functioning and appearance.¹¹

Because print and broadcast media reports influence public perception and opinion about medical conditions, they have a social responsibility to educate by accurately explaining the basic facts necessary to understand the issues. Neurologists and other physicians can assist by speaking with media personnel and educating them.