Myths and misinformation: Patients make decisions without all the facts

Public often doesn’t understand complexities of care

Patients don’t always make their health care decisions based on facts. They often determine whether they should see a doctor, follow a treatment plan, or adhere to certain prevention guidelines on misconceptions and faulty information they gleaned from the media, family and friends, the Internet, and other sources.

People have misconceptions about the prevention of illness, healthy lifestyle behaviors, recognizing symptoms and warning signs, how to access the health care system and use it, and medical issues such as medication use, says Virginia Forbes, MSN, RNC, program director of patient and family education at New York-Presbyterian Hospital in New York City. For example, some people believe that diabetes can be prevented if they don’t eat sweets.

Cultural practices as well as health beliefs and values can affect a person’s willingness to take certain actions that may have been recommended by his or her health care provider, says Forbes.

"Misconceptions can be more widespread than we expect," she explains. "As health care educators, we must never assume that a person has accurate information, but rather assess what it is they know and move forward from there."

As a neonatal educator at Children’s Healthcare of Atlanta, Egleston Campus, Eileen Murray, RN, BSN, deals with myths about pain management on a regular basis. Parents often don’t want their babies treated for pain because they have heard that infants can’t tolerate the effects of pain medication or they are frightened about side effects, she says. Some think that their baby will become addicted to the pain medication.

People may develop a tolerance for a medication and have to be given larger doses as time goes by or be slowly weaned from the medication as pain subsides but that doesn’t mean that they are addicted, says Murray.

Some people believe that when a person is in the hospital, he or she should expect to have pain. "Actually pain is treatable and manageable, and our goal is to make sure nobody has pain," says Murray.

Sources for misinformation

In October 2002, staff at Grant/Riverside Methodist Hospitals in Columbus, OH, conducted many community outreach classes on breast cancer. Each time a class was held, women in the audience questioned the need for mammograms and breast self-exams based on information in the media about studies that found these early-detection methods ineffective.

"We got so many questions, we began acknowledging these studies right up front and discussed how to evaluate the research," says Mary Szczepanik, MS, BSN, RN, manager of cancer education support and outreach at the health care institution.

Often people believe that if they read something in a newspaper, magazine, or on the Internet, that it is true. Also, they believe that if it is true it applies to them, and that can be faulty thinking, she says.

People make assumptions about health practices based on the interpretation of a study, which may not be accurate, agrees Murray. Several years ago, parents in the United States began putting babies to sleep on their side based on sudden infant death syndrome research in Switzerland. Yet it wasn’t applicable to the United States, she says.

Cancer patients frequently think that the most recent treatment is the best. Or they think that if a relative had cancer and they get cancer, too, that their treatment should be similar. "Individualized care is not a concept that the public understands. There are more than 100 different kinds of cancer, more than one kind of breast cancer, and various stages of all cancers, and the way we treat those illnesses or those stages varies and the same is true in heart disease and diabetes," says Szczepanik.

All this misinformation comes from a variety of sources. During a health fair in the spring of 2002, Forbes conducted an informal survey to determine how people got information about health care. She created a form with several options that could be checked and a comment section so participants could write in sources that were not mentioned.

Sixty-seven people completed the form for a total of 179 answers. When the data were tallied, she found that people in the survey indicated they received health care information from the following sources:

  • physician: 33%;
  • television: 12%;
  • friends/family: 11.2%;
  • Internet: 11.2%;
  • nurse: 9.5%;
  • library: 9%;
  • newspaper: 9%.

Organizations, textbooks, and magazines also were cited. Reviewing the list of varied sources remind educators they need to reach out in many different directions to ensure that people are getting accurate, reliable, and current health information, says Forbes. But they particularly need to educate consumers about how to locate reliable sources of health information to help them take charge of their care.

If myths and inaccuracies are not dispelled consumers might not readily seek health care because they wouldn’t necessarily recognize symptoms or know how to seek help, says Forbes. "There may be complications that could be avoided if the patient seeks care earlier," she explains.

If people don’t use early screening methods for disease because they have concluded that they are not effective based on faulty information then diagnosis might come at a much later stage, says Szczepanik. "When cancer is diagnosed at a later stage, it is much harder to treat and consumes a lot more health care resources with poorer outcomes for the patient," she says.

For more information about myths and their impact on health care, contact:

  • Virginia Forbes, MSN, RNC, Program Director, Patient and Family Education, New York-Presbyterian Hospital, 525 E. 68th St., New York, NY 10021. Telephone: (212) 746-4094. E-mail: vforbes@nyp.org.
  • Eileen Murray, RN, BSN, Neonatal Educator, Children’s Healthcare of Atlanta, Egleston Campus, Neonatal Services, 1405 Clifton Road., Atlanta, GA, 30322. Telephone: (404) 325-6260. E-mail: eileen.murray@choa.org.
  • Mary Szczepanik, MS, BSN, RN, Manager, Cancer Education, Support and Outreach, Grant/Riverside Methodist Hospital, 3535 Olentangy River Road, Columbus, OH 43214. Telephone: (614) 566-3280. E-mail: szczepm@ohiohealth.com.