Sick To Death > Chapter 2 > The "No Surprise" Question

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

The "No Surprise" Question

The data on prognosis show just how uncertain forecasting survival time often is. For a few decades, our society has given special attention to certain people because they are not expected to live long. As noted earlier, the category of "dying" marks people who are overwhelmingly likely to die within a few weeks, or maybe a month or two. It includes a strongly stereotyped set of behaviors about those who are terminally ill or "dying": friends and family are to visit, the patient is to say good-byes and bless the living, the care system is to be gentle and unobtrusive, and death is to come within the expected time. But a serious and pervasive inability to prognosticate with precision complicates this approach. For example, a person can have heart failure sufficient to have a life expectancy of less than six months and yet have a 5 percent chance of dying within a week or the same 5 percent likelihood of living for five years. Most people who die will not have a discernible period of terminal illness, but most will have been quite ill before death. If we allow special attention and behaviors only to those who are virtually sure to die soon, that minority will feel that they must conform, while everyone else will encounter resistance when they attend to their mortality.

Who should receive special services because they are at the end of life? The only defensible category I have been able to find takes in people who are already very sick with a condition that is expected to cause death, even if they may live for many months or years. This cohort includes most of the people with serious illnesses in the last years of life but not many people who actually recover and do well thereafter for a substantial period of time.

Many clinical settings have found that a useful way to identify these patients is by asking their physicians and nurses: "Is this person sick enough that it would be no surprise if he or she died within the coming year (or the coming few months)?" (Lynn, Schall, et al. 2000; Lynn, Schuster, and Kabcenell 2000). It generally does not matter if the time frame is a few months or a year, since the issue is whether the current illness could worsen and cause the person's death. This "no surprise" question has worked well for targeting clinical improvement activities, though it has not been tested in regulatory, financing, or more formal service delivery innovations. Some patients identified in this way will die quickly and some will live a long time, but all are sick enough that they would benefit from comprehensive services tailored to advanced illness and the last part of life. Often, this question identifies patients who are "too sick" to come to see the doctor; they should generally get care where they live.