Prognosis. The word comes from Greek for "fore-knowledge" and refers to a prediction a doctor can make regarding a patient's chances of recovery or survival. Complicating things is the huge chasm of medical knowledge between doctor and patient, which inevitably means a doctor has to choose which details to share and which to withhold.
So how do we approach the prognosis?
The first step is to acknowledge that we have good information about patients' chances of survival. For instance, in 2004, the journal Clinical Oncology published an analysis on standard chemotherapy treatments for 22 types of cancers in adults. It found that patients on chemo had a 2 per cent better chance of surviving for five years than patients not on chemo. Pretty meagre results. But those results fit with other studies in the US and elsewhere. It bears saying that there are a few types of cancer for which standard chemo is wildly successful, with cure rates in the 80 per cent range. And there are some cancers for which novel therapies have been successfully brought to market since the study. But on the whole, there are a lot of cancer patients on standard chemo who probably don't know the odds they're dealing with.
The way around this quagmire is for patients to ask for the hard numbers. "What is the cure rate for patients with my specific diagnosis?" That's a question every patient should ask, whether they're in for a bunion or metastatic melanoma.
Doctors may hesitate to answer, either because they don't know the numbers, or they don't want the patient to lose hope. The numbers can be looked up by any doctor with internet. Keeping patients in the dark isn't an effective strategy in improving survival rates.
Patients need what doctors already have in the back of their minds: A reference point. Patients without a reference point end up creating one themselves, out of a stew of anecdotes, misinformation and often erroneous assumptions.
This was seen in a 2012 New England Journal of Medicine study looking at over 1000 palliative chemotherapy patients.
They were placed on palliative chemo purely to reduce symptoms, with no expectation of curing their cancers. Yet 69-81 per cent of lung and colorectal cancer patients on palliative chemo for incurable cancer still thought it was likely to cure them.
It's not just chemo patients who end up with no idea of what's really going on. Patients with all manner of serious chronic diseases end up never being explicitly informed of how sick they really are, leaving them and their families poorly prepared for the last stages of illness, with no plans for pain management or supportive care, and no chance to put personal and financial affairs in order.
Their final moments of care often being dictated by doctors, and their deaths often occur in the impersonal confines of a hospital room. Not a death most of us would want, yet one that happens far too often, even in the setting of chronic, predictable, slowly progressive diseases where we could have had the time to do things right, but for whatever reason, didn't have the courage to speak the truth until it was too late. We can do better.
Talk to your doctor about the prognosis for your chronic disease, ask about the natural course, discuss what steps you will need to have in place when the time comes, and don't settle for vague answers.
Gary Payinda, MD, is an emergency physician who would like to hear your medical questions. Email email@example.com. This column gives general information and is not a substitute for the advice of your doctor.