BACKGROUND 

Addressing uncertainty is central to prognosis. Patients do not think of themselves as “statistics,” and may view themselves as the exception, rather than the rule. The evolutionary biologist Stephen J. Gould famously captured this perspective in his wonderful essay, “The Median Isn’t the Message,” after being diagnosed with mesothelioma. Talking with patients about uncertainty involves several key steps. There are varying levels of uncertainty over most diagnostic and treatment decisions, such as whether a fever is a result of a urinary tract infection or whether someone will benefit from a statin for primary prevention. Just as the uncertainty does not absolve the clinician from making decisions in these cases, prognostic uncertainty does not absolve the clinician from thoughtfully discussing prognosis with patients.

STEPS AND EXAMPLE

Notice how the clinician in this example does the following steps in addressing uncertainty:

1. State the uncertainty associated with the prognosis. This usually means giving a range, “Your life expectancy is five to seven years. It could be more, it could be less, but if I had to give a best guess, that is what I would say.”
2. Normalize the uncertainty. Notice how Dr. Schonberg says, “Please don’t take what I say about prognosis as a prescription. It’s an estimated guess.”
3. Respond to the emotion generated not just by the prognosis, but by the inherent uncertainty associated with prognosis. Sometimes people get caught up in the uncertainty, hoping and waiting for a future that may never arrive. This step involves responding to the emotion and refocusing from the future to the present.

Take a minute to think about what worked well in this example and what can be done differently.

PRACTICE PHRASES

• “I am going to give you my best estimate of the time you have left, please know that some people will do worse and some people will do better.”
• “For people such as yourself, with this disease, who are mostly in bed as you are, I would estimate the time you have left to be measured in weeks. Unlikely to be days but also unlikely to be months.”
• “Someone with your condition lives, on average, for about 5-10 years. Though some do better and some do worse.”

REFERENCES

1. Gould SJ. The Median Isn’t the Message.
2. Smith AK, White DB, Arnold RM. Uncertainty – the Other Side of Prognosis. N Engl J Med. 2013 Jun 27;368(26):2448-50.