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Making Decisions About Treatment

March 2001

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, see the Resource Guide to HIV/AIDS-Related Resources (in PDF format).

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, see Making Decisions About Therapy.


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