Media coverage of the story of Terri Schiavo demonstrated the mass media’s potentially powerful influence on people’s decision making about their own end-of-life care, according to a study by researchers at the San Francisco VA Medical Center and the University of California, San Francisco.
Schiavo was a 41-year-old woman in a persistent vegetative state who died in March 2005 after her feeding tube was removed. Her death and the legal battle surrounding it were covered extensively by the world press.
During the Schiavo controversy, the team interviewed 117 people who were participating in a separate study of advance directives, which are legal documents used by patients to specify end-of-life treatment wishes. The researchers found that almost all of the subjects in the advance directives study had heard about the Terri Schiavo story. Of those who had, a majority viewed the story as an opportunity to clarify their own care goals and discuss them with family and friends.
“Around the time the Schiavo story peaked, we were making follow-up calls to the subjects in our advance directives study,” recalls Rebecca Sudore, MD, a geriatrics researcher at SFVAMC who was lead author of both investigations. “Participants had little interest in discussing our study. They just wanted to talk about Terri Schiavo and what they would want done if they were in her situation. It was clear that Terri was on everyone’s minds, and that we needed to delve into the impact her story had on patients’ decision making about their own end-of-life care.”
The current study, which appeared in the August early on-line issue of the Journal of General Internal Medicine, found that 92 percent of the participants overall had heard of the Schiavo case. Among those who had heard of Schiavo, 61 percent reported clarifying their own end-of-life care goals as a result; 66 percent reported speaking with family and friends about advance care planning; and 37 percent reported wanting to complete an advance directive.
However, only 8 percent reported speaking to a physician about advance care planning, and only 3 percent reported completing an advance care directive. Sudore emphasizes that the study did not explore the reasons for what she terms this “disconnect,” but speculates that one reason might be that the patients’ physicians did not capitalize on the opportunity to bring up the topic of advance care planning.
“Terri’s story appears to have really made an impact on people,” says Sudore, who is also an assistant professor of medicine at UCSF. “By not discussing her story with our patients, we physicians may have missed a golden opportunity to initiate rich discussions about advance care planning, as well as a chance to help them clarify their own wishes for end-of-life care.”
The study authors note that English speakers were more likely than Spanish speakers to have heard of Schiavo (96 percent vs. 85 percent), and that subjects with higher than eighth grade literacy were more likely to have heard of the case than speakers with eighth grade literacy or lower (100 percent vs. 79 percent).
“Even so, the reach of the media coverage was quite extensive even among non-English speakers and people with limited literacy, likely due to extensive television coverage,” says Sudore. “This study demonstrates the power of visual images, and of medical stories, to encourage engage patients in their own advance care planning. Such tools may be important for patient education and public health campaigns in the future.”
Co-authors of the study are C. Seth Landefeld, MD, of SFVAMC and UCSF; Steven Z. Pantilat, MD, of UCSF; Kathryn M. Noyes, BS, of SFVAMC and UCSF; and Dean Schillinger, MD, of UCSF and San Francisco General Hospital.
The study was supported by funds from the American Medical Association Foundation, the National Institutes of Health, the National Institute on Aging, and the Pfizer Fellowship in Clear Health Communication. Some of the funds were administered by the Northern California Institute for Research and Education.
NCIRE - the Veterans Health Research Institute - is the largest research institute associated with a VA medical center. Its mission is to improve the health and well-being of veterans and the general public by supporting a world-class biomedical research program conducted by the UCSF faculty at SFVAMC.
SFVAMC has the largest medical research program in the national VA system, with more than 200 research scientists, all of whom are faculty members at UCSF.
UCSF is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care.