18 - The Hardest Decisions

Summary

Living with a potentially life-limiting illness usually brings with it a series of difficult decisions. Beyond the impact of the initial diagnosis, new and tough choices arise when:

• Available treatments no longer are very effective

• The disease itself worsens despite proper treatment

• Complications cause a setback

• Your ability to get up and around declines

• You have trouble eating and drinking enough

Such events sometimes happen in rapid succession, and everyone (you, your family and friends, and medical providers) is so busy stamping out fires, nobody pauses to get the big picture. However, in general, choices about treatment need to be considered in terms of two things: prognosis and goals.

Let's look at prognosis. We've all heard stories about someone who was told he had six months to live, only to be mowing his lawn two years later, or the person who was never supposed to walk again striding across the stage to get her college diploma. Unfortunately, although these exceptions do occur, the more discouraging truth is that they are relatively rare, and most of the time, physicians overestimate rather than underestimate prognosis. The reasons for this overestimation are complex, but they are related, in part, to the fact that no doctor wants to deprive a patient or family of hope, and most patients (and their families) generally don't want to hear the reality of really bad medical news.