"How much longer" part II

Surprising report from the ASCO annual meeting. One of the most meaningful presentations was about a survey of oncologists from the last annual meeting about their practices of having end-of-life discussions with their patients. I should make one caveat about the relationship between end-of-life and oncology: there are other fields of medicine that deal with death and dying as well. Surgery, cardiology, pulmonology. But there is a lot of death and dying in oncology--cancer is often a fatal disease. Oncologists get a lot of experience in sitting with patients and their families at the end of life, so it's good we attempt to study it formally. Probably a lot of people pooh-poohed this particular presentation because it was not "scientific," but I thought it was interesting.

The main results of the survey were surprising. One, the authors revealed that oncologists had a great amount of ambivalence about counseling patients and their families. Some even had a detached approach, and denied any emotion at all. The second finding was that many were reluctant to provide concrete numbers about how long the patient was expected to live, but that many of them would themselves want to know what their life expectancy is.

The authors reviewed other research that confirmed that (some) patients want to know the definite time-frame of their life expectancy.

I had this thought, that the speaker alluded to: It's hard enough to predict the life expectancy of someone who is healthy. A cancer diagnosis does not make it that much easier to predict how long a person is going to live.

I am starting to think that patients want to know a number about their life expectancy not because they've been conditioned to expect that information, but because they really want to know, operationally, for their lives. Maybe people have a morbid fascination with their own death, the way we all have a morbid fascination with the deaths of others (witness the enduring popularity of Titanic, and no, it wasn't the wooden love story that sold all those tickets).

So I've started sharing median survival information with patients. I don't know how much they really hear of what I'm saying. I'll say something like, if we took 100 people in your situation, half would live longer than 6 months, and half would not. There are some people who live much longer than 6 months. They probably go home and tell their family, "Doc says I got 6 months to live." This kind of pronouncement usually prompts more family to visit next time, which makes the visit take longer, but helps the patient at home.

I think this also speaks to the popularity (and necessity) of tumor markers. There are some patients for whom tumor markers are useless to track the progress of their cancer. But there are some patients who have residual disease for whom tumor markers are well-correlated with the disease burden. Doesn't mean they'll die sooner, but it is a tangible way of keeping score. Morbid fascination or vital information? I'll have to tell you when I get cancer myself.