PI Perspective #32
March 2001 View PDF En
español
Making Decisions About Treatment
Making treatment decisions can feel overwhelming. Developing a
personal plan to help you think about, plan for and make decisions
can help. It’s important that your plan is one you’re
comfortable with and feel empowered by. This article summarizes
issues to consider as you develop your own decision-making plan.
Get informed! Learn about HIV disease and
your treatment options!
Whenever possible, get informed about treatments well before it’s
time to start. Starting treatment discussions with your doctor will
greatly increase the chances that you will avoid starting therapy
either too early or too late.
Find out what the research shows.
Understanding HIV treatment research can be difficult at first and
there is an overwhelming amount of information in circulation, often
with widely differing points of view. Project Inform can help. We
have objective information about HIV, treatment options and strategies.
Though we try to make it the best source, Project Inform is not
the only place to get information about HIV treatments and strategies.
For a list of references, call the National HIV/AIDS Treatment Hotline
and ask for the Resource Guide
to HIV/AIDS Related Resources.
Explore, examine and challenge your beliefs
about therapy.
Concerns and fears about starting therapies are common. Learning
about therapy can lessen concerns and help you decide whether and
when treatment is right for you. In exploring your beliefs about
a therapy or combination of therapies, you might find that you have
come to a conclusion based on personal fears, rumors or biased advertising.
Grounding yourself in knowledge, rather than fears, and challenging
where possibly unfounded beliefs might be clouding decision-making
is critical to making wise treatment decisions.
If, after considering the facts, you believe that
an approach may be more harmful than its potential benefits, you
might be better off considering another option. There are many possible
therapies and strategies to choose from, and none of them are right
for everyone. You can always revisit your decision at a later time.
Don’t reject what you believe about therapy—explore,
examine and challenge those beliefs—and weigh them in with
other considerations.
Learn about the experience of friends and
people you trust.
Talk to friends, support groups and others who are experiencing
similar health conditions. Ask about what kinds of treatments they’re
using. Why did they choose certain treatments and what have their
experiences been?
While learning about the experiences of others can
be helpful, it’s important to keep an open mind. Just because
someone you know had a bad or good experience with a particular
therapy doesn’t mean that you will. The most reliable picture
of a therapy’s actions will come from well-designed studies,
and even these cannot predict how you will respond.
Ask your doctor’s opinion about the
therapy that you are considering—what is it and what is it
based on?
Does the doctor have advice about whether a particular therapy might
be helpful for you? Has the doctor followed other people using the
same approach?
Get as much information as possible, from a variety
of sources you trust. It’s better to make an informed decision
that you feel comfortable with than a hasty one.
Once You’ve Made A Treatment Decision, Then Consider
…
When to start?
There is no one proven “right” time to start anti-HIV
therapy. There are differences of opinion about starting therapy
early in the course of HIV infection vs. later. Either choice has
possible long-term consequences. Deciding on your own criteria,
with the guidance of your doctor, lets you be in control of your
treatment decisions. The first article of this PI Perspective provides
an in depth discussion on when to start therapy.
How to monitor whether a therapy is working
for you?
Before starting a therapy, it’s important to have realistic
expectations about what it will do and determine how to monitor
its effectiveness. For anti-HIV therapy, typically you will look
for decreases in viral load (HIV RNA), increases in a measure of
immune health (CD4+ cell counts) and improvements in overall general
health.
Determining if a complementary therapy is working,
when it doesn’t have any direct anti-HIV activity, can be
more difficult. Talk to your doctor and work together to develop
realistic ways of determining if the product you want to use is
working. If after some agreed upon period of time you are not achieving
your goals, agree to revisit the use of the therapy you are trying.
Have these discussions before you start taking the therapy.
How to monitor (and manage) potential side
effects?
Before you start a therapy, learn about potential side effects,
how to monitor for them and how to manage them. But don’t
automatically assume that you will experience any particular side
effect. Many people who start or switch to a new anti-HIV regimen
will experience some side effects or symptoms. These may include
headache, nausea, diarrhea and/or tension. Often these go away within
four to six weeks and not everyone experiences them. Some therapies
have potentially life-threatening side effects that occur only very
rarely. You can learn to watch for early signs of serious effects
and what to do if they arise. (Read Project Inform’s Drug
Side Effects Chart for more information.) It’s just as
true, however, that many people do not experience any significant
side effects, and that some people perceive the severity of side
effects differently.
When to switch therapy and what you might
switch to (if necessary)?
Many people are making strategic decisions about therapy that look
years into the future instead of days or weeks. To do this, think
about how the therapies started today will affect options later.
Consider what you might do if your current or pending option doesn’t
work, causes too many side effects or for other reasons doesn’t
fit with your lifestyle.
When to stop?
How do you determine when a given therapy or approach just isn’t
working for you? At what point do you say that the cost or potential
risks associated with using the therapy isn’t worth the potential
benefits of staying on it? Working with your doctor before you start
therapy to develop some criteria around this—that you both
feel comfortable with—is important.
In all of these areas you might come to decisions
and agreements with your doctor that change over time. Your expectations
of a therapy may change as you learn more and as new information
becomes available. Changing your mind and rethinking your strategies
are healthy and normal parts of evolving a decision-making process.
Conclusion
Developing a treatment decision-making plan offers many benefits,
but it also takes effort on your part. The likelihood of benefiting
from therapy increases and the likelihood of experiencing serious
side effects decreases when you are involved in decision-making
and monitoring. For a more complete discussion of these issues,
read Project Inform’s publication, Making
Decisions About Therapy.
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