Here is an enlightening article we found a while back and saved to share with our readers:
What oncologists say is often not what patients hear
Journal of Clinical Oncology – By Tony James
A study of oncologists’ discussions
with patients has clearly
demonstrated the problems in
communicating effectively about
risk, benefit, prognosis and other
complex, emotion-laden issues.
British researchers led by
Professor Lesley Fallowfield
recorded consultations between
17 oncologists and 52 patients
contemplating enrolment in phase
I trials. The clinicians completed
questionnaires after seeing each
patient, listing the areas they felt
they had discussed. Patients
were interviewed to examine
their recall and understanding.
“In several key areas, information
was either missing
or had been explained but
was interpreted incorrectly
by patients,” they said.
Discussion of prognosis was a
frequent omission: although oncologists
said they had discussed
it, both patients and the independent
observers often disagreed.
Establishing prognosis was
a fundamental and ethical
prerequisite for patients being
able to consider how best
to use the time left to them.
“Discussing prognosis is
undoubtedly a difficult task,”
they said. However, patients
contemplating early-phase studies
should have a clear understanding
of their situation to
enable truly informed consent.
Patients’ pessimism and optimism
were both barriers to clear
communication. Some appeared
to be nihilistic about palliative care
as an alternative to enrolment in
the trial. Others had unrealistic
hope about the likely benefits of
the new and unproven therapies
with which they might be treated.
“If clinicians were even
slightly ambiguous, then optimistic
the report stated.
“Clinicians need specific
skills to maintain honesty about
poor prognoses while helping
patients to maintain hope
through realistic optimism.”
Patients who volunteered to
help with clinical trials deserved
respect, with information delivered
clearly, supportively and
with empathy, they concluded.
Please try and have a friend or caregiver attend important meetings with your physicians whenever possible. One or both of you should take notes. More tomorrow.
Feel good and keep smiling! Pat & Pattie