Entire Transcript in Adobe Acrobat Format - National Reference ...

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that it is a shame that we are calling this an advance
directive because I think that it is a very -- the document
that we describe as a RAD in here is really very different
from the kind of advance directive for end of life care.
Secondly, I see it much more as a kind of
ongoing contract with the researchers which can change as
time goes along so if the subject objects at any time they
can go out. Plus it involves certain safeguards like a
surrogate decision maker. Plus I do not know if we
actually filled this out -- I have to go back and look and
see exactly what Jonathan said.
But there should be also some kind of outside
health care provider who is also involved and is not part
of the research so that it is not simply an agreement to be
in a research protocol and it certainly should not be done
ahead of being -- I mean, it should be part of the informed
consent process. The surrogate would be part of the
informed consent process. All the safeguards would be
built into a contract to protect the person who may have
fluctuating incapacity.
DR. CHILDRESS: Have you taken out -- I guess
one question would be then what role advance plays in this
at all?
DR. CASSELL: What role has what?