Approach to Disclosing Prognosis

  • Normalize the uncertainty of prognosis; that we will never know with certainty what will happen to given individuals.
    • "I understand that you want more accurate information about the future. The reality is we can never be certain about the future. I wish I could be more certain but I will give you the best information I have."
  • Address patients' and families' emotions about uncertainty, acknowledging how difficult it may be for them not to know.
    • "It is tough not knowing what the future is going to bring."
  • Help patients and families manage the effect of uncertainty on their ability to live in the here and now.
    • "What can we do for you now, given we are uncertain about what the future will bring?"
  • Use evidence-based tools/studies to estimate future quality and quantity of life
    • For example, if you are being asked to provide statements about "how long do I have to live", consider going to ePrognosis (http:// eprognosis.ucsf.edu/) or some other evidence-based source to determine best estimates given the patient's disease or underlying condition. If asked about the chance of different outcomes associated with certain treatments, such as the probability of full recovery for in hospital cardiac arrest with CPR, use robust outcome data or validated clinical prediction rules. If there are no good data to support your prognostic declaration and you are relying on your clinical judgement, say so. In any case, consider providing estimates of outcomes in ways that continue to express ˜uncertainty.' Some patients may prefer precision that comes from a quantitative representation of data such as:

      "If there were 100 people with an illness just like yours, 50 of them or half would not be alive in 6 months."

  • For illnesses with higher levels of uncertainty, like COPD or CHF, consider something like
    • "Some may live for years, some may only live for weeks but half will have died by 6 months. Of those who are alive, many would not be as healthy as you are now. It is hard to say for sure what will happen to you. We like to hope for the best and plan for the worst."
  • For illness where there is more certainty of prognosis but less time for the patient, like with many advanced Stage IV cancers, consider saying:
    • "I am sorry. Given your situation, you likely have only {weeks to months} or {months to a year or so} to live"

      OR

      "I expect a {low, moderate, or high} chance of success with the [proposed treatment]."

TIPS

  • You will have to adapt the nature (quantitative vs. qualitative; superficial vs detailed) of this discussion around prognosis to the person you are talking, based on their emotional response to the conversation and the answers to prior question and paying attention to the sophistication of their language/vocabulary
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