NCCN Guidelines for Patients
: Non-Small Cell Lung Cancer
Part 8: Accepting a treatment plan
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8.3 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
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 lung cancer,
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
There are four key steps to making a shared treatment
decision. First, know what you want from treatment.
Do you want a cure or symptom relief? What hardships
are you willing to accept to meet your goal? Second,
know your test results. This information can pinpoint
what’s important for you on websites and in books and
brochures. Test results can also clarify which treatments
Third, strive to have helpful talks with your doctor.
Prepare questions before your visit and ask questions
if your doctor isn’t clear. You can also record your talks
and get copies of your medical records. Fourth, accept
help from others. An active role doesn’t mean going
through it alone. Others can help you be active by finding
information, taking notes, asking questions, and helping
you talk through your options.