Patient agency
Many patients did not perceive themselves to have agency in the
decision-making process and were eager to accept their doctor’s
recommendation because they did not view themselves as the experts. Some
felt more comfortable placing control in the hands of physicians, family
members, and other sources of power (i.e., God):“[I ask] no
questions. Yes, the doctor told me everything. I follow him. They [my
son and doctor] just talked about it; didn’t share anything. The
doctor told my son, he told me everything…and I believe to God…God
knows better.” -Patient 7.
Clinicians described a mix of patients who are more engaged and involved
in the process and those who are more passive; providers perceived low
health literacy and feelings of being overwhelmed as primary reasons for
less engagement: “It depends on the patients. Some people, they
are more inquiring. So they ask questions and they engage with the
conversation, and they ask a lot of questions along the way. But again,
a lot of patients, they might be overwhelmed with the conversation. So
they may not ask questions right away.” -Clinician 5.
They reported that elderly patients often have less agency in these
decisions as children make medical decisions for them. All clinicians
generally encouraged more patient agency in the decision-making process;
they reported encouraging them to ask questions and framing options in
terms of both the evidence and personal goals.