Managing expectations
“ Managing expectations means communicating so that all involved have a clear understanding of what to expect-and when to expect it. It also requires keeping communications open “
After reading some sad stories of how patients have received news of the progression of their disease and that they didn’t see it coming, Ive come to the conclusion that more needs to be done to manage expectations for life extending treatments. The problem is that in some diseases the response rates are very variable and the doctors can’t tell you if you will do better or worse than the average, and it’s understandable we as patients want to hope for the best. The problem is how do you manage expectations without taking away hope but also allow patients to be realistic and therefore make the right life choices for themselves and their families. I’ve known since diagnosis that my time was extremely limited and no doctor has ever raised my hopes and in a way that’s made it easier for me to live in the moment, the truth is my disease is so rare that they have no idea about timescales, so I have had to managed my own expectations. I would be interested to hear your experiences of how doctors managed your expectations of disease progression and how you think it can be handled better.
