In the most recent online issue of the Journal of the National Cancer Institute, Angela Fagerlin, a researcher and associate professor of internal medicine at the University of Michigan Medical School, and her colleagues published some tips to guide patients towards the goal of informed consent, since a cancer diagnosis is literally a matter of life and death, and there are plenty of reasons to believe that the patient-doctor line of communication is not nearly what it could be.
Although the paper was written for patients, it is only accessible by physicians and researchers who subscribe to Oxford Journals. However, a dumbed-down and more media-friendly version was made freely available by the journal. The tips suggested include:
-- Insisting that one's doctor repeat anything they have said using simpler language, non-medical language. If you don't understand something, ask doctors to explain it again. A simple "Can you repeat that whole part, slower this time and in language I can understand?" might do.
-- Ask for statistics to be given to you in terms of Absolute Risk. Absolute Risk presents statistics in a much clearer fashion than its deceptive cousin, Relative Risk. Example: Your doc says, "This drug will cut your risk in half." That's relative risk, and it's confusing, especially if you asked for Absolute Risk figures, because then the doc would say, "The drug will lower your risk from [for example] 4 percent to 2 percent." Knowing that the absolute risk figures are what they are to begin with is much clearer than being given inflated relative risk figures.
-- Ask about other risks. Maybe the risk of having a side effect is low, but if you don't take the treatment, might you still experience that side effect. In sum, ask about the additional or incremental risk of a treatment is to get the fuller picture.
-- Take notes. (Better, use a voice recorder)
-- Don't let yourself get caught up in averages. Average risk is based on large numbers of people. Ask your doctor to consider your health, your circumstances, and gauge your personal risk,
-- There are several known treatments for cancer, but they may not all apply to your situation. Ask about the ones that matter to you.
Source
Bailey, Laura. Improving Cancer Communication to Patients. JNCI J Natl Cancer Inst (2011)doi: 10.1093/jnci/djr398.
