Soon after I started writing this article I was asked to give a talk explaining some of the downsides of cancer testing. The talk, sponsored by the Dartmouth Community Medical School, was part of a larger effort to expose everyone to recent scientific developments in medicine and to encourage participation in current medical debates. Over a hundred people came; most were of an age for which cancer screening is directly relevant. The group was very engaged and, judging by their questions, understood well the problems I was posing.
Nonetheless, many of the ideas I presented were clearly disturbing to this audience. People were surprised at how few cancer tests had been studied rigorously and, in those that had, how little effect screening had on the amount of deaths in general. While the notion of false positive results and cascades of testing were familiar, the concept that people might be treated unnecessarily or have a cancer found that they would rather not know about was not. But most disconcerting was the general uncertainty about who really had cancer particularly the idea that different pathologists might say different things
One woman was particularly frustrated. She pointed out that I had presented lots of problems without providing an obvious strategy. I think she understood that there were no simple answers and found that frightening. She said, "At some point don't we must decide how much faith we have in our general internist, our radiologist, and our pathologist? We can't go through life wondering what else is lingering beneath the surface. I fear as you tell people to be advocates for their own health care, you run the chance of scaring them to death."
The current tendency is to expect people to take more responsibility for their health and to participate more actively in medical decision making. A primary reason I wrote this information is that I support this approach. But as in all things, moderation is called for. People cannot assume sole responsibility for their own health; much illness is outside personal control (so let's not blame people for being sick).
And doctors should not assign sole responsibility for decision making to the patient. We have to take care not to be heard as saying, "I don't care what you do, you may want." Most patients look to their doctor for guidance while they actively participate in medical decision making.
Some want doctors to make decisions for them, and that's okay too. If being an "advocate for your own health care" translates into making decisions without any input from your doctor, it is easy to understand how people can become "scared to death." No one wants to make important medical decisions alone.
But the woman's statement contains another idea, an insight into how people get scared to death in the first place: they worry about what might be going on. By now you probably understand that this is one kind of my fundamental concerns about the whole enterprise of testing for cancer: it causes people to bother with what might be going wrong inside them. How you feel about this sort of "dis-ease" being spread by the medical system is a great place to start in addressing the question "What should I do?"
ASK YOURSELF What you need FROM MEDICAL CARE
As i said in the introduction, the dominant cancer prevention strategy in American medicine today is to consider cancer in those who have no symptoms.
Given the problems discussed in this article, you will need to gauge your own reaction to this approach. How we perceive health is a choice: you may assume you are healthy until proven otherwise or assume that a problem may exist until proven otherwise. How much effort, emotional and otherwise, do you want to devote to looking for things wrong when you feel well? To what extent would you rather focus on being well when you feel well?
Many forces combine to make medical care a more prominent part of our lives even if we are well. Scientific advances mean more is possible; increased societal affluence means more is affordable. And size of the market lots of healthy people means there are strong economic incentives to promote preventive services for the well. But it is important to think about how working to avoid death might affect your experience of life. Do you see medical care as a way to deal with problems you observe, or as a vehicle to find those problems you do not know? A different way to phrase the question might be: Would you like to focus your efforts on staying well or on avoiding death?
You might find it useful to think about where you are on it. You also need to think about how you feel about cancer in particular. A few questions may help you initiate the process. Do you have a particular interest in avoiding dying from cancer?
Would you gladly trade a cancer death for any other? Would you, perhaps, do everything you can to avoid it even at the buying price of a greater likelihood that you'll be diagnosed with cancer and suffer harms from treatment? Feelings like this argue for testing: desiring no matter what to avoid death, people who feel this way are quite willing to allow medical care a large role in their life.
Others, however, may prefer to focus on being healthy (rather than trying to procure health) and choose to minimize medical contact while they feel well. They may deliberately trade off a small increase in the chance of cancer death for the very real benefits of avoiding medicalization, excessive diagnosis, and overtreatment. People who feel this way prefer to work to stay well, reserving medical care for problems as they present themselves.
Pursuing disease is not at all just like pursuing health. In fact, they easily conflict. It can be quite difficult to promote wellness when you are actively looking for things to be wrong.
Of course, different people feel differently about cancer. And different people have different approaches to life. So we can expect that people will make different decisions about testing.
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