Colleagues
I think this was discussed a while ago, but I would be interested
on views/ how you tackle it.
Situation is where you get a member of the public asking for
information on a condition and its treatment; the only
information you can get is written by and for health
professionals; and it mentions bluntly a poor prognosis.
The query I had today was like this, and anything I could find
with any detail on treatment options mentioned the expected
prognosis of around 20-44 weeks/ under a year,regardless of
therapy.
I raised this with an expert in patient rights/ ethics a while
ago, who said robustly that once the doctor has given the patient
the name of their condition, no librarian/information officer had
the right to censor the information provided. I cant feel
completely comfortable with that, tho. I send information, but
sometimes less detailed than they want as I am avoiding text with
clear usual survival rates when these are short.
I do always refer people to the appropriate medical charity in
the hope that they can provide their own verions of the
information, tailored to be more sensitive tho still informative,
plus maybe support. And mention the consultant/GP, tho of course
enquirers have often tried that source without success...
One option I havent tried is to ask the enquirer what they have
been told about the prognosis before starting my search, but this
seems a bit blunt in a one-off contact of this type.
I also had a query some time ago from a pregnant woman desperate
for a picture of an anencephalic baby, as her foetus had been
diagnosed with this (she did know it was 'serious'...)
Views welcome! Thanks
Fiona
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