A Cultural Barrier: Patients and the Media
Mass media is a very important source of information reporting widely on medical issues. These reports influence the general public, policy, decision makers and healthcare providers. They should be valid, influential, a warning but at the same time could be misleading, speculative, inadequate. We face the two sides of the medical message-one side created by negative psychology leads us to punishment and misinformation, another due to positive psychology, includes education, tolerance, and acceptance.
"To cause awareness is our only strength," some years ago the photojournalist W. Eugene Smith stated commenting on his work on mercury poisoning in Minimata in Japan. His declaration could be a motto of this presentation.
Breath Taken-The Landscape and Biography of Asbestos is an exhibition of photographs by Bill Ravanesi that was published in 1990. At that time many people in the United States considered the asbestos problem behind them. The photographed faces of the victims and their stories are saying: "Understand what has happened to me and do something about it." The project visualized people's drama for the sake of the public health and safety. Ravanesi wrote in the preface of his book: "Will all this breath taken be in vain?"
Reconstructing Aphrodite was created together by photographer Terry Lorant, medical doctors Loren Eskenasi and Terry Young and 21 female-breast cancer patients who went through treatment and reconstructive surgery. The presented portraits and personal stories show that there is hope and life after breast cancer. Lorant captured both the beauty and the human spirit even after removal of one or both breasts. The intimate stories and moving pictures give hope and chance to those who could face similar situation "so no woman will ever have to face this illness alone."
Another project which crosses the barrier of deep psychological misunderstanding and intolerance was created in Berlin. In the theater Ramza Gamza all actors and actresses have Down's Syndrome but still they show their passion, their vision of the world, their personalities through the play on the stage thanks to the best pieces of world literature.
Such programs unify society-the patients, their relatives, their friends, those who never had a chance to be exposed to the problem, the health professionals and the media.
At the opposite pole the cultural backgrounds, the knowledge, language and personal experience create barriers in society which are difficult to cross.
A study in the United States in 1995 found that one-third of English-speaking hospital patients could not read or understand basic written health information: 42 percent did not understand instruction how to take a medicine; 25 percent did not understand information on an appointment slip; 60 percent did not understand a standard form.
Medical doctors have some responsibility for this situation. According to the AMA, doctors have too little time for giving information. The AMA highlights the gap between what patients actually understand and what health professionals expect them to know. As a practicing out-patient doctor who sees up to the 20 patients on every day basis, I know very well how difficult it is to examine, talk, listen, explain, discuss, and answer all questions in 20 minutes-and at the same time to take care of an additional patient or manage a medical intervention. As a patient I feel unsatisfied because of so many questions to ask. As a close relative of a chronically sick patient I feel terribly about the illness and no appropriate information.
According to a Polish study done in 2001, 80 percent of respondents knew about common medical mistakes, but only 30 percent had experience with them; 50 percent learned about malpractice from the media.
The contact between journalists and medical professionals is often a meeting between two cultures with little in common and with many chances for misunderstanding, with different attitudes towards the same subject and different goals.
Medical reports can increase or diminish the willingness of individuals to seek medical care; may raise expectations-sometimes falsely; may dash hopes, may give hopes; may provoke alarm-sometimes unnecessarily; may teach and give basic information about a health issue; may help start a conversation with a doctor or nurse; and may develop the feeling of distrust towards healthcare professionals.
The following statement from a journalist is a perfect description of a newspaper lead: "People don't read newspapers sitting in armchairs in front of a fire. They read them on station platforms, crowded subways, stuck on the street. So the stories have got to grab them by the throat."
Healthcare professionals and researchers aim to improve the quality of healthcare. Journalists have other priorities-their aim is not to promote science and effective or efficient healthcare but to explain the world and sell newspapers. "If we don't sell newspaper we are out of our job." Among the journalists and the physicians are some similarities: little time for story vs. little time for patients; little space to present complex information vs. little time to give complex information to patients; the need to sell stories can conflict with providing balanced information-financial incentives can conflict with providing good care; journalists have difficulties making jargon understandable-doctors have problem with communicating with patients; journalists may compete for attention-doctors may compete for patients.
To find out what journalists in Poland know about safety issues and adverse events, 23 journalists were questioned. All of them declared that they committed mistakes associated with their work. According to 8 percent of them, the medical staff should not commit any mistakes; 73 percent are aware that an adverse event could happen in healthcare. Sixty-five percent of respondents believe that the apology by the doctor and the nurse would not diminish the trust towards the person who made the mistake. The media would be informed in 21 percent if the case was not harmful and in 34 percent if the case was harmful. Seventy-three percent of journalists agree that the registration and analysis made by a center would improve quality and safety, and 65 percent of them know about a safety program.
Healthcare intervention should benefit the patients but at the same time could cause harm. The benefits and the risks are due to the complex combination of processes, modern technologies and human interactions.
The question remains open how ready we are-the society, patients, politicians, health managers, the media and medical professionals-to cross the barrier and speak openly and honestly about adverse events?
Grażyna Czarnecka, M.D., Ph.D.