Media coverage of persistent vegetative state and end-of-life decision-making

In 1990, Theresa Schiavo, an American citizen, had a cardiac arrest that caused irreversible brain damage which led to a persistent vegetative state diagnosis. A few years later, this diagnosis became a source of conflict over the interruption of artificial nutrition.

The "Schiavo Case" was widely discussed from a medical, ethical and social standpoint in the United States and elsewhere. In an article to be published in the September 23 issue of Neurology, the renowned journal of the American Academy of Neurology, and available online today, a team of bioethicists composed of Dr. Eric Racine of the Institut de recherches cliniques de Montréal (IRCM) and experts from Stanford University, in California, and the University of British Columbia examines the media coverage featuring this famous case.

The study reviewed American daily newspapers that were most prolific about this story: the New York Times, the Washington Post, the Tampa Tribune and the St. Petersburg Times. A total of 1 141 articles and over 400 letters to the editor were analyzed. Never before had the media coverage of such a clinical case been studied so extensively. The accuracy and the nature of the statements on Terri Schiavo's neurological condition, her behaviours, her behavioural repertoire, her prognosis and the withdrawal of treatment were examined. "In the course of our research, we were surprised by the amount of medical inaccuracies that these newspapers had published, said Dr. Racine. Some journalists even wrote about Mrs. Schiavo's reactions to specific words or expressions supposedly showing that she was conscious." More than scientific and medical information, the legal, political and ethical dimensions made the headlines.

Only 1% of the articles examined gave a definition of the "persistent vegetative state," an essential concept to understand the issues at stake. The persistent vegetative state is an established neurological condition characterized by severe lesions to the cerebral cortex, which eliminate higher functions: inability to communicate, absence of memory, absence of pain, etc. However, the brain stem responsible for vital functions is not damaged, which accounts for the patients' reflexes and their ability to breathe and swallow independently. Despite the fact that Terri Schiavo's medical condition did not allow any reasonable hope of recovery, a fifth of all articles (21%) contained statements according to which her condition would improve. "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," explains Eric Racine.

The Neurology article provides an objective measure of misinformation, which underlined that the information available to the media had limitations. "The public debate surrounding this case showed that the medical, ethical and legal consensuses on the legitimacy of the withdrawal of treatment in accordance to a patient's will were challenged." In fact, Racine points out that while in the 60's and 70's people mostly rallied over the right to refuse treatment, an opposite pressure was applied in the Schiavo Case by relatives and public opinion. "This case is quite original because it reveals the emergence of a pro-life social stream, a trend that has now reached Canada," adds the researcher.

For their misunderstanding of the subject matter or their bias, are journalists to be blamed? Mass media have become a space of complex social interaction where the public takes its information and reacts to it. However, Internet and the media cannot replace official sources, be they medical, legal or political. In order to improve the quality of the information that is relayed to the public, families and key-actors, specialists must adopt strategies that will take into account the limitations identified in the media coverage of the Schiavo Case. Such ethical and medical debates would certainly benefit from information that is both more accurate and more accessible to the layperson.

Reference: Eric Racine, Rakesh Amaram, Matthew Seidler, Marta Karczewska, Judy Illes. (2008) Media coverage of the persistent vegetative state and end-of-life decision-making. Neurology, published online August 6, 2008, http://www.neurology.org/papbyrecent.shtml.

Eric Racine is Director of the Neuroethics Research Unit at the Institut de recherches cliniques de Montréal (IRCM). He is also Associate Researcher at Université de Montréal and Adjunct Professor in the Department of Neurology and Neurosurgery at McGill University. This research was funded by the IRCM, the National Institutes of Health, the Social Sciences and Humanities Research Council of Canada, and the Greenwall Foundation.

Established in 1967, the IRCM (www.ircm.qc.ca) is recognized as one of the country's top-performing health research centres. It has a mandate to understand the causes and mechanisms of diseases in order to find diagnostic tools and means of prevention and treatment; to train a new generation of high-level scientists; and to contribute to Québec's socio-economic development by facilitating the commercial development of new discoveries. The IRCM has 37 research units and a staff of more than 450.