Twelve years ago, then 28-year-old graduate student Brian Zikmund-Fisher was forced into the toughest choice of his life: Die from a blood disorder within a few years or endure a bone marrow transplant that could cure him or kill him in weeks.
Zikmund-Fisher, now an assistant professor at the University of Michigan School of Public Health specializing in health communication, chose to gamble. After nine months of blood transfusions, a bone marrow match was found in Australia. Zikmund-Fisher spent another month in isolation until his new immune system began working.
"That experience taught me how to be a well-informed patient," said Zikmund-Fisher, who studies medical decision making because of his own experience. "Unfortunately, today many patients don't learn what they need to in order to make informed medical decisions."
To document the challenges patients face in deciding their own medical care, Zikmund-Fisher and Mick Couper, a research professor in survey methodology at the U-M Institute for Social Research (ISR), led a national survey of medical decisions featured this month in a themed issue of the journal Medical Decision Making. The study, which was carried out by ISR's Survey Research Center, surveyed more than 3,000 U.S. adults about nine common medical decisions and concluded that the majority of patients don't have sufficient information to make the best decisions.
"I want to raise the awareness of how important medical decision making is in the lives of all Americans and how unprepared most people are to make these decisions," said Zikmund-Fisher, also an assistant professor in Internal Medicine at the U-M Health System. "I see this as a public health issue."
Some of the key findings:
- Patients don't always learn about why not to have a procedure or medication. For example, only 20 percent of patients considering breast cancer screening and 49 percent of patients considering blood pressure medications reported hearing about the cons of those actions.
- Healthcare providers don't always ask patients what they want to do. For instance only 50 percent of patients deciding about cholesterol medications reported being asked whether they wanted them.
- Most patients don't use the Internet to help them make common medical decisions, and healthcare professionals remain the most important information source.
- Patients often don't know as much as they think they do. Many patients feel well informed even when they don't know key facts that could help them make a better decision.
- African-Americans and Hispanics were less knowledgeable than other patients about medications to treat high cholesterol and more likely to say that their doctor made decisions about cholesterol medications for them.
- Most patients think they are more likely to get cancer than they are, and tend to think cancer screening tests are more accurate than they are.
- The study's findings suggest that men and women think about cancer risks differently. Women are more active participants in cancer screening decisions regardless of how at risk they feel, whereas men tended to get involved only if they felt at high risk.
"Informed consent isn't real if patients understand so little about the tests and treatments they are getting," said Dr. Michael Barry, professor of medicine at Harvard Medical School and president of the Foundation for Informed Medical Decision Making, which funded the study.
In fact, the Patient Protection and Affordable Care Act, signed by President Obama earlier this year, has many provisions aimed to ensure patients are partners in medical decision making.
These provisions include making patient decision aids for common health care decisions more widely available and promoting their adoption in U.S. health care. Decision aids help clinicians inform patients about their options and help patients ensure that their preferences are respected.
The decision study focused on describing how Americans make everyday medical decisions and didn't try to determine what patients should do to get more information from doctors or other sources, Zikmund-Fisher said. However, some obvious themes emerged.
"Recognize that you have a right to be involved in your own medical care. If your doctor only tells you why you should do something and doesn't discuss reasons why you might not do it, ask for that information anyway," Zikmund-Fisher said. "Don't think of it as medical care. Think of it as your care."
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