Most studies suggest physicians are more accurate about prognosis than even about diagnosis. However, physicians are often reluctant to acknowledge their ability to describe disease trajectory and to establish prognosis accurately. In particular, we are reluctant to share that knowledge with patients. Although motivated by the best intentions (not wanting to take away hope, fear of being wrong) this reluctance can have serious consequences:
- Poor symptom management: for example if the emphasis is on changing the disease trajectory, symptom management is often neglected. This is a common phenomenon in cancer care.
- Misleading optimism regarding life-sustaining measures: for example the question, “do you want us to do everything?” can imply to the patient that “doing everything” will significantly change the global trajectory.
- Unexpected or unprepared for deaths: for example the ED is sometimes the first time that anyone has realistically addressed the disease trajectory with the patient and family – a common phenomenon in frailty and organ failure trajectories. How often do you hear, “But I thought Mom was doing fine!”
Test yourself in your own ability to establish prognosis.
For each of the following patients seen in the ED, state your prognosis (probable time to death.) Express it as a range, using the units of hours, days, weeks, months, or years (eg. 5-10 hours or 1-2 years). Once you enter a response you’ll see the range of other people’s choices.
- 57 man just diagnosed with glioblastoma multiforme, still working , first seizure.
- 74 yo woman with breast cancer, post lumpectomy, negative nodes, in third round of chemo, with vomiting.
- 82 yo man early dementia, living at home, now with LLL pneumonia, with dyspnea.
- 96 yo woman with advanced dementia, not drinking for five days, now drowsy.
The following questions are not often a component of ED history gathering but can rapidly add a lot of information about the patient’s basic health status:
- How much are you able to do for yourself?
- In general how much time do you spend in bed each day?
- How far can you walk before you develop symptoms?
- How much do you eat?
- Do you need oxygen?
- How many times have you been to hospital in the past year?
Here are several tools that are commonly used and well validated in establishing prognosis especially in cancer and chronic organ failure:
- Karnofsky Performance Scale
- ECOG Performance Status
- Palliative Performance Scale
- Prognostic Indicator Guidance
- 10 Steps to Better Prognostication
They may help shape your thinking when asked “what’s going to happen?”