Informed
Consent
Truth-Telling
and
• UPHS Bioethics Retreat, May 1999
– Dave Magnus, PhD.
• preliminary notes:
– N.B. --these issues are more problematic with
end-of-life decisions
Consent
Involves four elements:
•
•
•
•
Competence
Disclosure
Understanding
Voluntariness
Competence
• Legal sense -– Competent "in general"
• ie -- does not need a Psych. consult
– Vs.
• Specific Competence
• Pt. may not comprehend the specific
aspects of their care
Competence
Magnus:
• "the conflict between general and
specific competence often stems from a
value discrepancy...”
• (ex.--if the pt. doesn't agree with me, it must be
that they are incompetent!)
Disclosure
• Legal sense -– The "Reasonable Pt. Standard"
• (DIFFERENT from the "reasonable person
standard")
– VS
• The "Subjective" Standard
• ex.--if pt. wants/does not want a lot of
information, then that is what should be
respected
Competence / Disclosure
Understanding
Re:Ingelfinger,
"Informed (but Uneducated) Consent”
• Even when the letter and the spirit of the
letter of the law are adhered to by the
clinicians involved,
• "...the chances are remote that the
subject really understands what he has
consented to..."
Competence / Disclosure /
Understanding
Understanding
Re:Ingelfinger,
"Informed (but Uneducated) Consent”
• "The difficulty that the public has in
understanding information that is both
medical and stressful is exemplified by [a
report that] only half the families given
genetic counseling grasped it's impact."
Understanding
Re:Ingelfinger,
"Informed (but Uneducated) Consent”
• Ingelfinger even implies the it may be
unethical to present a Pt. with all of the
contingencies that may be involved in an
experiment (since they are not capable of
correctly assessing the risks; ex -- if
people read the "fine print" they wouldn't
take aspirin)
Magnus' ex. of video:
• Both Pt. and Dr. knew the purpose of the video
(to document informed consent) and the
clinicians involved knew and respected both the
letter and spirit of Competence and Disclosure
as noted above.
• When asked, "Who made the decision?" prior to
viewing the video documentation, Pt. and Dr.
both said, "the Pt. did"
• AFTER viewing the video Pt. and Dr. both STILL
said, "the Pt. did"
• AFTER viewing the video, neutral observers all
agreed: "the Dr. did”
• …!
Comment from
Mimi Mahon, PhD. RN.
• "We present information via our own
biases -– it is our responsibility to recognize
those biases and mediate them."
Heuristic: (Magnus)
• if the physician spent most of the
time talking, then there was no
informed consent!
– ASK: "Tell me about what's going on -what brought you here?
Voluntariness
• The root of consent, but this has been
called into question by the above. If the
Pt. is judged not competent or not
capable of understanding what has been
disclosed, "is it ever legitimate to secure
the consent from some third party?”
Competence / Disclosure /
Understanding / Voluntariness
What about
research/procedures
involving
•
•
•
•
Children
Prisoners
Placebos
Non-therapeutic
benefit
participants
• Mentally incompetent patients
to
Mimi Mahon, later addressing
DNR consents and Children
"Of the children who were dying, 100%
knew that they were dying, despite the
'fact' that psychologically kids 'didn't have
the capacity to think abstractly."
"Kids are used as pawns -- the parent says,
'I'll bring my child here, but only if you do
not tell them [the implications]'"
Mimi Mahon, later addressing
DNR consents and Children
ex.- dramatic effort to re-attach fingers to a
child's hand. "We wouldn't have done this
to an adult." Mimi: "Then WHY?“
While intending to do the best for children
parents and HCP’s sometimes only make
things worse…
Good intentions are not alone ‘good
enough’
< ! >