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Informed
Decision-Making: Finding Your Path in the Face of
Uncertainty
by Nancy Oster and Lucy
Thomas
Medical conditions such as diabetes or
appendicitis are well understood and usually
treated successfully. However, some diseases are
not as easily controlled, leading to uncertainty on
the part of the both the doctor and the patient
about the best choice of treatment. Medical
situations that warrant research include the
following:
No generally successful form of treatment
exists,
Standard treatment has failed to check the
progress of your disease,
The risks of the treatment might outweigh the
potential benefits,
Insurance limitations have restricted your
options, regardless of benefit,
You are experiencing unexpected side effects,
or
You have been given several treatment options to
consider.
In these cases, you and your doctor can work
together to evaluate and agree upon the best course
of action. Since your doctor's time with you may be
limited, you will want to use the time you have
together as effectively as possible. Time spent
reading about your condition will help you
understand the vocabulary, as well as what is known
about the disease and, even more importantly, what
cannot be predicted about the development and
progress of your condition. You can learn why a
proposed treatment may or may not work, and what
potential short- and long-term risks it
includes.
Often as you learn more about your medical
condition, the choices become more complex. Instead
of finding answers, you may discover there is more
uncertainty than you expected. But like everyday
decisions, such as whether to drive or fly to a
destination, you will decide by weighing your sense
of risk against the urgency of the situation.
Asking informed questions helps you develop a
realistic perspective on the risks and benefits of
the treatments that you are considering.
While it is not necessary to become
knowledgeable about every aspect of the disease
(just as you do not need to learn to pilot a plane
when you fly), you can learn enough about it to
decide where to place your trust and when to look
further. If you are contemplating a rare
complicated surgery, you might look for a center or
specialist who performs that surgery on a regular
basis. If standard treatment has failed, you might
contact a research center and look for appropriate
clinical trials. If you are basing a major medical
decision on a lab test, you might want to learn
more about the reliability of the test.
The decision-making process includes listening
to your inner voice. Some of us are risk-takers;
some of us are not. Your willingness to take risks
may change if your condition worsens. While people
around you may encourage you to take certain risks
or avoid others, you must make the ultimate
decision. You are the one who will live with the
consequences.
It is important to communicate your concerns
about outcomes, adverse effects, and quality of
life to your doctor when you are discussing
treatment choices. They can be critical in the
decision-making process. For example, radiation to
the mouth might affect your ability to taste, a
breast reconstruction using the back muscles might
affect your ability to play tennis, or chemotherapy
might prevent you from having children in the
future. If you are a chef, an avid tennis player,
or a young person who has not yet had children, the
personal impact of these effects must be considered
and discussed along with the pros and cons of other
methods of treatment.
In essence, research prepares you to ask the
questions you need to ask your doctor, discuss the
level of risk you are willing to take, and consider
which temporary or permanent changes in quality of
life you are willing to make. Coming to your
medical appointments with a background of
information and understanding will greatly enhance
your involvement in the treatment planning
process.
With patient access to medical information over
the Internet, many doctors fear that patients will
show up carrying an armload of papers for them to
interpret. Most doctors, however, appreciate those
patients who read and digest the information and
come prepared to ask specific knowledgeable
questions and share thoughtful discussion about
their options.
Since appointments are often limited to
15-minute sessions, here are some tips for
effective use of that time:
Find out how long the appointment will be so you
can prepare accordingly. If you feel there is too
much to cover in one session, ask for an additional
appointment.
Make a list of your questions and concerns.
Prioritize your list. You may not be able to
cover every issue in one appointment.
Give your doctor a copy of the entire list at
the beginning of the appointment. That gives your
doctor the opportunity to prioritize the elements
of discussion too.
Take a friend with you. Ask your friend to take
notes so you can focus on the discussion.
Ask if it is okay to tape record the discussion.
Often there will be explanations that you will want
to listen to more than once, or to share accurately
with other members of your family.
Include some time to work together to identify
the next step in the decision-making process. Think
carefully beforehand about what you want to
accomplish at this particular appointment. If you
have concerns about negative treatment outcomes,
discuss ways to monitor and cope with those
possibilities.
As you reach the point where you must make a
decision, you will have become informed about each
proposed therapy and its positive and adverse
effects. Your final decision will incorporate your
own personal needs and wishes with the scientific
and medical facts you have gathered. You know your
own feelings and can sense which option is the best
choice for you. As an informed patient, you
understand that your medical decisions must be
based on research, as well as your own personal
needs and intuition, in partnership with medical
science.
Nancy Oster is a medical writer, healthcare
activist, Internet expert and educator, as well as
the founding president of the Breast Resource
Center of Santa Barbara. When she has spare time,
Nancy cooks gourmet meals, practices yoga, creates
websites, gardens and designs quilts.
Lucy Thomas, MLS, is the director of the
Reeves Medical Library in the Cottage Hospital in
Santa Barbara. She is a distinguished member of the
Academy of Health Information Professionals of the
Medical Library Association and is on the editorial
board for Medicine on the Net. Lucy likes to ski,
sail, hike, garden and take long walks on the
beach.
Nancy and Lucy actively support access to
open and free healthcare and health information.
They recently co-wrote a book with Darol Joseff,
MD, entitled Making Informed Medical Decisions:
Where to Look and How to Use What You Find. The
book is available at the CRCMC library.
Nancy plans to present an educational forum,
"Making Informed Medical Decisions," for CRCMC on
Feb. 7. (See CRCMC Calendar for more
information.)
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