Don’t ask, "How long do I have?," ask: "What is the shortest and longest that I can reasonably expect?"
At virtually every encounter, reconfirm likely symptoms and needs in general terms: "From what I know now, I’m making plans around a need for _____ (occasional severe illness, a few months of substantial disability, a risk of seizures, whatever...). Is that about right? Anything else?"
When something new arises, ask: "Does this change what I can expect?"
Expect that many doctors won’t really know the answers. Ask your doctor, "How many patients like me have you followed through to death?" Don’t accept: "There’s no one quite like you!" If your doctor doesn’t really have any experience, find someone (another doctor, a home health nurse, a nursing home nurse, a hospice professional, or a support group leader) who has "been there" before.
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 Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission. To learn more about improving care at the end of life visit the main web site for Americans for Better Care of the Dying.
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