After receiving a diagnosis, Is it necessary to learn your prognosis to be a Healthy Survivor? The answer depends on whether finding out helps you get good care and live as fully as possible, which are the two defining criteria for Healthy Survivorship.
50 years ago, physicians usually kept patients in the dark about the diagnosis and prognosis if dealing with a disease like cancer. Today, it’s almost automatic for doctors to state the prognosis. Dr. Google doesn’t hesitate to post prognoses (none of which are tailored to any individual’s situation, by the way).
Patients who don’t want to know their prognosis must proactively take steps to prevent physicians (and others) from telling them. One step is to fill out a Prognosis Declaration—a form that specifies how much they want to know. (On the site, scroll down to see the four options.) Palliative-care specialist BJ Miller writes in Don’t Tell Me When I’m Going to Die, “When faced with serious illness, being able to make decisions about the flow of information is one of the most life-affirming things you can do.” Dr. Paul Kalanithi wrote a brilliant essay about this after developing lung cancer: How Long Have I Got Left?
Just because you can know something doesn’t mean you should or must know it. As a Healthy Survivors, slow down. Explore whether knowing the prognosis would help or harm. Then make your wishes clear. If you change your mind at any time, make your revised wishes clear. Your life. Your choice.
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