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NCCN Guidelines for Patients™: Multiple Myeloma
7.3 Your role in planning
The role patients want in treatment planning differs. Some patients want to
be involved as little as possible. Others want to know everything and share
decision-making with their doctors. These two roles are described as passive
and active. Tell your treatment team which role you want or if you want a role
somewhere in the middle.
In a passive role, a person often doesn’t seek out information, speak up for him/
herself, or think through treatment options. This may be due to a high level of
stress. It may be hard to hear or know what others are saying. Stress, pain,
and drugs can limit your ability to make good decisions. You may also want a
passive role because you don’t know much about cancer. You’ve never heard
the words used to describe multiple myeloma, tests, or treatments. Likewise,
you may think that your judgement isn’t any better than your doctors’.
Letting others decide your treatment may make you feel more at ease. But,
who do you want to make the decisions? You may rely on your doctors alone to
make the right decisions. You can also have loved ones help. They can gather
information, speak on your behalf, and share decision-making with your doctors.
Even if others decide your treatment, you still have to agree to treatment by
signing a consent form.
In an active role, a person often searches for all information, prepares for
all outcomes, and speaks up for him/herself. He or she may take the lead or
share in decision-making. Taking this role may make you feel more certain and
hopeful. You’ll likely get the treatment you want, at the place you want, and by
the doctors you want.