A Framework for Making a Treatment Decision for a Life Threatening Disease

You have just been told that you have a serious medical problem. The doctor has presented you with a number of treatment options. But you can barely concentrate. You leave the office, with your head buzzing. Thinking what should I do now?

This experience is not uncommon for patients faced with a life-threatening disease such as a cancer or COPD. However, more and more patients do get involved in the treatment decision, working with their medical team to shape their treatment within medical guidelines and within their values and lifestyle.

In studies with breast cancer patients making treatment decisions in the early 90's, Pierce determined that patients both seek treatment-related information and engage in problem solving that focuses on the compatibility of each treatment option with their personal situations and values, and medical preferences. Although you may feel you don't have enough time, you can take the time to learn and make a decision with your doctor.

View your treatment decision as the result of an iterative process through which you gather information about your options and then weigh each one in the context of personal and family issues. With both you and your doctor having this information, you make the decision jointly.

Here are some steps to take:

First, make another appointment with your doctor. This appointment is to thoroughly discuss with your doctor the options. Take a family member or friend with you to also hear and also record the meeting so you can rehear the information at home.

Before the appointment, make a list of questions you need to ask. Remember to include not only information about what the treatment is, but also what happens to you before, during and after the treatment, what are the side effects and how long treatment and recovery will be.

Think about your life, your preferences and what in your treatment is most important. When facing a life threatening disease and difficult treatment, many opt for a good quality of life over a few additional weeks or months. Also think about activities you must continue to do and what can be put off, or handed off to someone else. Do you have someone who can help you during this time. Include this information in your discussion with your doctor.

Armed with this information meet with your doctor. Be honest about your concerns and limitations. Good questions to ask are "what treatment would you recommend to a family member", what are the most common side effects that you see? Can one of your patients who has had this treatment talk to me?

After this meeting, you will have a better sense of what your options are and what may be best for you. However, before making a decision talk to other patients who have gone through these treatments. You will learn a lot. Look for online support groups and support groups in your community. Research each treatment if you still have questions.

Finally, sit down quietly and look through your options, what you know about each and your values and preferences. You will begin to find a pattern and become comfortable with your decision.

References

Pierce PF. Deciding on breast cancer treatment: a description of decision behavior. Nursing Research 1993; 42:22-28.