How Much Do You Want -- or Need -- to Know?
Tuesday, February 6, 2007
Four times, I have been diagnosed with life-threatening diseases. Each time, the news stopped me cold; it landed me in a hospital; it forced me to rearrange my life and rethink my responsibilities while my body was battered by drugs and surgery.
And it immersed me in a cold, uncomfortable reality that is familiar to anyone who has received a sudden diagnosis of serious illness. Our connections, our skills in finding information and acting on it, our abilities to cope -- all of which are necessary for making the right decisions and getting the right care -- feel suddenly inadequate.
But through my own experience -- as well as the experience of talking to more than 200 others who have faced a devastating diagnosis -- I've discovered that people are remarkably resilient once they gather the information they need to reconstitute their immediate futures.
There is no time in one's life when it is more important to make judicious use of the scientific information now abundantly available to us -- and there is no time when you feel less able to do so.
What's more, people have very different ideas about how much they wan t to know about their disease or the disease of someone they love. Suzanne Miller, a psychologist at the Fox Chase Cancer Center in Philadelphia, found that people tend toward being either what she calls "blunters" (those who have little interest in seeking out information or learning about risks) or "monitors" (who track down the details, for example, of the molecular structure of their pancreas -- online, at the library and in conversation).
Regardless of whether you are a blunter or a monitor, there are four main reasons you need a basic understanding of your disease and its treatment.
Collecting information is the first crucial step that allows you to make decisions that are right for you. You can say yes or no to a doctor's recommendations, but you need some basic knowledge to be able to serve your own best interests.
Second, you need a mental model of what is happening to you. Until you have one, it is difficult to make sense of the actions you must take to participate in your treatment. If you understand basically what the pills do to keep your condition in check, you will be more likely to take them as directed. If you know what a certain test will tell the doctor, you'll be more likely to show up for it.
Third, you need to realize that what doctors consider state-of-the-art treatment in Connecticut may be very different from what doctors recommend in the Washington area. This means you may have more choices than you realize. It does not mean, however, that you need to cram a complete medical education into the days following a diagnosis. You simply need to know enough to ask informed questions.
The fourth reason you need to know about your condition and its treatment is that you -- and probably your partner or family member -- will need to keep a vigilant eye on your care. Most patients do not have access to an electronic record that includes their entire health history, test results and treatment plan. Each new doctor and institution you visit may have to piece together the information that is relevant to your care. It is common knowledge that such decentralization can lead to mistakes.
Educating yourself about your disease can be difficult when what you really want to do is delegate the responsibility for making decisions to your doctor. Further, the diagnostic process sometimes moves too quickly for deliberative information-gathering. "If you are going to the emergency room and then straight into surgery, there is not a lot of time to learn what this means and to discuss it," noted Janet Baradell, a psychiatric clinical nurse specialist in private practice in North Carolina.
But as Ellen Stovall, president of the National Coalition of Cancer Survivorship and twice the recipient of a cancer diagnosis, puts it: "It is a rare exception that any condition must be responded to within 48 hours. Taking an extra week to see another doctor, get another opinion and do a little more research can make all the difference between getting the wrong treatment or less-good treatment, rather than the right treatment for you."