Uncertainty

A recent study by Katrina Hopper at Yale (http://newoldage.blogs.nytimes.com/2012/06/04/among-the-very-ill-confusion-about-lifes-end/?ref=health) suggests that elderly patients with serious diseases are confused about the course of their illness.  She studied 185 people whose average age was 73.  All lived at home.   All had advanced cancer, heart disease, or lung disease and were thought likely to die within six months, although some lived a lot longer.  Interviewers asked them “which of the following best describes what you think the course of your final illness will be?”  The options were “Will die suddenly."  "Will die within a day or two of a serious complication." "Will die after a prolonged illness."  "I don’t know.” 

Interviewers asked the respondents this question every four months for up to two years.  The most frequent response was “I don’t know.”  Only a third expected a long illness, although this was most likely to be the case. (“Very few people die suddenly in their sleep,” noted Dr. Hopper.)  Striking was the respondents’ uncertainty, with almost all of them changing their answer between one interview and another.  Over half changed their minds two or more times.  The only variable related to the patients’ expectations was their disease.  If they had cancer, they were more likely to expect a lingering illness.

Why were the patients in Dr. Hopper's study uncertain?  Each of them had a terminal disease that followed a relatively predictable path.  Did they not ask their doctors?  Had their doctors been reluctant to tell them?  Or had their doctors told them but the patients were unwilling or unable to understand what they heard?

I didn’t ask my medical oncologist to describe the course of my disease – or if I did, I didn’t process his answer.  He was, as I recall, rather vague, beyond telling me that once the hormone treatment stops working, there are other treatments available in his armamentarium and that I should not view myself as suffering from a terminal disease but from a chronic one that can be managed, like hypertension.  He didn't really convince me that stage four cancer is a chronic disease, although at my age, one of my other medical problems might just as likely knock me out.  When next I see him, I will ask him to be more specific.  How much longer is the hormone treatment likely to be effective?  How painful will the next stage of treatment be?  I think it better to be realistically informed than to imagine that I’ll continue to feel so good for the indefinite future.  Or is it?  Perhaps I should continue living in my Fool's Paradise.  It's awfully nice in here.