Talking with doctors about cancer and cancer treatments can feel like learning a new language, and people facing cancer diagnoses often need help to understand their treatment options, and the risks and benefits of each choice.
The U-M Health System suggests 10 things healthcare professionals can do to help improve the way they communicate information about treatment risks to patients. These suggestions from the associate professor of internal medicine at the University of Michigan Medical School and a University of Michigan Comprehensive Cancer Center researcher, and colleagues, explain how patients can tap into these same best practices to become fluent in the language of cancer care and better understand their options:
1. Insist on plain language. If a patient does not understand something their doctor says, the patient should ask their doctor to explain it better.
2. Focus on the absolute risk. The most important statistic a patient should consider is the chance that something will happen to them. Sometimes, the effect of cancer treatments is described using language like “this drug will cut your risk in half.” But, such relative risk statements do not say anything about how likely this is. Research has shown that using relative risk makes both patients and doctors more likely to favor a treatment, because they believe it to be more beneficial than it actually may be.
If, instead, a doctor says to a patient “the drug will lower your risk of cancer from 4 to 2 percent,” now the patient knows that most people will not get cancer regardless. And it will give the patient the exact benefit they would get from taking the drug.
3. Visualize the risks. Instead of thinking about risk numbers, patients should try drawing out 100 boxes and coloring in one box for each percentage point of risk. If their risk of a side effect is 10 percent, they would color in 10 boxes. This kind of visual representation, called a pictograph, can help people understand the meaning behind the numbers.
4. Consider risk as a frequency rather than as percentages. What does it mean to say 60 percent of men who have a radical prostatectomy will experience impotence? Imagine a roomful of 100 people: 60 of them will have this side effect and 40 will not. Thinking of risk in terms of groups of people can help make statistics easier to understand.
5. Focus on the additional risk. Patients may be told the risk of a certain side effect occurring is 7 percent. But if the patient did not take the drug, is there a chance they’d still experience that? Patients should ask what the additional or incremental risk of a treatment is.
6. The order of information matters. Studies have shown that the last thing someone hears is most likely to stick. When making a treatment decision, patients should not forget to consider all of the information and statistics they’ve learned.
7. Write it down. Patients may be presented with a lot of information. At the end of the discussion, the patient should ask their doctor if a written summary of the risks and benefits is available. Or, the patient could ask the doctor to help them summarize all the information in writing.
8. Don’t get hung up on averages. Some studies have found that learning the average risk of a disease does not help patients make good decisions about what’s best for them. A patient’s risk is what matters not anyone else’s. Patients should focus on the information that applies specifically to them.
9. Less may be more. Patients should not get overwhelmed by too much information. In some cases, there may be many different treatment options but only a few may be relevant to the patient. Patients should ask their doctor to narrow it down and only discuss with them the options and facts most relevant for them.
10. Consider your risk over time. A cancer patient’s risk may change over time. If a patient is told that the five-year risk of their cancer returning after a certain treatment, the patient should ask what the 10-year or 20-year risk is. In some cases, this data might not be available, but patients should always be aware of the timeframe involved.