How To Choose A Treatment
Making a decision about treatment can be an overwhelming experience.
- Decisions will likely need to be made throughout your journey related to managing your disease and its impact on your life. Sometimes it is hard to know what questions to ask the doctor. One proven strategy for getting the most out of your appointment is to be as prepared as possible. Having a written list of questions can help you feel more organized and comfortable in asking the questions you need to have answered as you work together with your doctor to make a decision about which treatment is right for you.
- As you consider the treatment options with your doctor and your family, you will need to determine what you can realistically expect from treatment. A goal of treatment may be maintenance, cure or extending your life while maintaining quality of life.
- Since every medication and treatment has some type of side effects, it is important to weigh the benefits and the challenges, and make a decision that is best for you.
- Treatments today for most situations have come a long way from years ago. There are many medications that reduce side effects and make it possible to continue to work or keep up with your usual activities.
When choosing a treatment, first and foremost: give yourself time to make a reasoned decision - particularly if you are newly diagnosed. If you were newly diagnosed, you need time to absorb what you have been told. With the exception of true medical emergencies, you usually have some time to make important treatment decisions without endangering your health. Ask your doctor for a time frame.
How to choose a treatment: Patient advocates suggest that the best approach to making a decision about a treatment is a process referred to as "shared medical decision making." Under this approach, a doctor and patient review information together about the risks and benefits of each treatment, and then customize care according to the patient's values and preferences. This approach can be broken down into the following steps.
Step 1. Know your rights.
- Your right to treatment: It is your legal right to determine your own treatment. This includes eachof the following rights:
- To receive complete information about your health and what the future might bring.
- To be informed about the benefits and risks of any recommended treatments and available alternatives so you can make an informed decision.
- To make and change decisions about your health, including any proposed treatments.
- Your right to refuse treatment: It is your right to refuse treatment or to start treatment and discontinue it at any time. To learn more, see our article about How To Refuse A Treatment You Don't Want And To Enforce Your Refusal If Necessary.
Step 2. Understand your diagnosis.
- In order to make informed choices about your medical treatment you must first understand your diagnosis. The more knowledgeable you become, the better prepared you will be to make important decisions. You will also have a greater understanding when discussing treatment options with your doctor.
- When discussing your diagnosis, ask your doctor whether there is take-home information he or she can provide or whether there are particular websites the doctor would suggest to learn about your diagnosis and what it could mean. (For information, see: Medical Research 101 and Medical Research Services)
- Speak with your doctor about the possibility of obtaining a second opinion.
Step 3. Be sure your doctor knows what he or she needs to know about you.
- Make certain your doctor knows:
- About any allergies you may have.
- About previous side effects you experienced from a drug or treatment.
- All information about your medical history that could relate to the condition.
- If you are or want to become pregnant or are nursing.
- About any medicines that you are taking, including those prescribed by other doctors. Be sure to include any over-the-counter medications including vitamins, herbs, and any other supplements.
- About any other complementary treatments you may be using.
- About any other aspect of your health condition or life that may impact your ability to take the treatment or its success.
Step 4. Decide what is important to you about your treatment.
When considering whether to take a treatment or not, think about what is most important to you. For example:
- The impact on your work.
- The impact on your daily life.
- The number of side effects or perhaps a particular side effect you prefer to avoid.
- The number of pills and/or shots to take and whether there are specific instructions for taking them (such as with or without food).
- The length of the treatment.
- Your out of pocket costs before, during and after the treatment. Include "non-medical" costs.
- The short term or long term need for assistance.
- The odds that the treatment will be successful.
- Whether the treatment requires hospitalization.
- Whether the treatment involves x-ray or radiation. If so, how much?
Step 5. Ask questions about the pros and cons of the proposed treatment and alternatives and get answers that you understand..
For a list of questions to consider asking depending on your situation, see the following:
- Questions To Ask Before Agreeing To Chemotherapy
- Questions To Ask Before Agreeing To A Lifestyle Change
- Questions To Ask Before Agreeing To A New Device
- Questions to Ask Before Agreeing to Radiation Treatment
- Questions To Ask Before Agreeing To Surgery
- Questions To Ask Before Agreeing To A Treatment Plan For Breast Cancer
- Questions To Ask Before Agreeing To Undergo A Treatment (for treatments not covered above)
If you would prefer to create your own list, you can keep track of your questions with our Prioritizer.
- Write questions as you think of them.
- Before you go to the doctor, you can number the questions in order of priority to you.
- A click of a key will shuffle your questions into the order you want. you can then print the form and take it with you.
- NOTE: Do not worry that a question will sound "silly" or "strange" to your health care team. They know you want to understand your treatment plan.
Consider taking with you to each appointment where a potential treatment will be discussed:
- A family member or friend to act as a patient advocate to help ask questions during the meeting and to discuss the answers afterward.
- A recording device to record what happens during the appointment so you can review it later. (Many mobile phones include the ability to record.) You will also be able to play the recording for other concerned friends or family members. (NOTE: Ask the doctor if it is okay before recording the conversation.)
To be sure you understand the answers to your questions, consider the following.
- Repeat the information back to your doctor and ask if your understanding is correct. This is particularly imporant with respects to the risks, benefits and alternatives to a particular treatment.
- If it would help you, ask the doctor to show you a visual such as an x-ray or scan provide or draw a diagram, or point you to an online video.
If the doctor doesn't have time to answer your questions, ask when you can speak again to cover the rest of your questions (via phone, fax, e mail or in another appointment.) If the doctor doesn't have time, you can ask a nurse, social worker or navigator.
If more than one treatment is available, after asking questions about each individual treatment, ask your doctor: "If you had a child of your own in my situation, what would you suggest he or she do?" Asking what the doctor would recommend to his or her child allows the doctor to express an opinion hypothetically which may lessen fears about liability that could prevent the doctor from giving an opinion.
If there is more than one treatment that could work for you,and it is not clear which is best from your point of view, our Treatment Evaluator can help you make a reasoned decision.
Step 6. Consider getting a second opinion.
Get an opinion from another doctor (a "second opinion") about the best treatment for your situation if:
- You think you want one.
- The recommended treatment involves major surgery or has significant risks or side effects.
- You have several treatment options, especially if the treatment options may involve the expertise of different types of specialists (known as a "multi-disciplinary" approach.) A doctor's background can have a direct bearing on his or her recommendations. For example, a surgeon may tend to think primarily in terms of surgical treatments, or a research scientist may be most interested in scientific outcomes. An opinion from a doctor who has a different specialty can be helpful.
- To learn about second opinions, including how to find a doctor for one, click here.
- If differing doctors have different opinions or recommendations, see our article: What To Do If There Are Conflicting Medical Opinions.
Step 7. If the answer doesn't seem clear by now, consider completing our Treatment Evaluator to help you make the decision.
- How The Treatment Evaluator Works
- The Evaluator lists each of the most common aspects of making a decision between various treatments. It allows you to to determine how important each aspect is to you on a scale of 1 to 5. The result allows you to make "apples to apples" comparisons according to what is important to you.
- The more aspects you compare, the more useful the Evaluator will be as a decision helper.
- The Evaluator points the way to the best treatment for you by providing a running total of each of the features you choose to compare. It's the comparison of the totals that counts, not the absolute totals. For example:
- Example A: Treatment #1 score is 7. Treatment #2 score is 11. Treatment #3 score is 3.
- Example B: Treatment #1 score is 70. Treatment #2 score is 83. Treatment #3 score is 9
- In Example A, Treatment #2 appears to be best for you. In Example B, it's Treatment #3.
- Your work will automatically be saved on your Individual Home Page if you log in. (To login, see the "Login" button on each page.) If you save your work, you can return and change the evaluator as many times as you like.
- Take your time. You can always save what you've done and come back when you're feeling fresher, or obtain more answers.
- Do Not Rely Solely On The Ratings
- Even though the Evaluator is designed to give you a reasoned recommendation, it is only a tool to help with your decision making. It is not intended to be a decision maker.
- When you compare totals, ask yourself: "Is the result what I expected, based on my overall impressions of each treatment?" If so, you probably found the best treatment for you. If not, review your answers, especially the importance ratings of various aspects.
- Before you make a final decision, discuss your treatment options, the option toward which you are leaning, and why, with an unbiased, qualified, medical professional.
- Before You Get Started
- If you need more information about a particular treatment, ask your doctor or his or her staff and/or do your own research. For information on how to do medical research, click here. For inforation about medical research services to do the work for you, click here.
- If working on this chart raises emotional issues, log in if you haven't already and save your work to your Individual Home Page. You can return to the chart when you're feeling fresher.
- Additional Evaluators To Consider
Step 8. Speak with the people closest to you and your medical team before making a final decision.
- The people closest to you know you well, have your interests at heart, and can help add a practical sense of the situation.
- The people closest to you will also be affected by your treatment decision.
- They will likely feel left out if they are not involved to at least some degree in the decision making process. Whether to accept their opinion, and, if so, to what extent, is up to you.
- If you are thinking of not taking a treatment, consider speaking with your spiritual advisor if you have one. If not, advisors are available whether you are part of their spiritual or religious group or not.
- Your medical team has knowledge and experience that is available on request. If there are questions that were not covered when you were with the team, contact the person or people who you think may have valuable input and speak with that person. If necessary, email or fax is a means of communication which allows the medical professional to answer when he or she has time.
If you have family members or loved ones who will be involved in your treatment decision or care, before agreeing to a treatment, consider requesting a "group appointment" that includes you, your doctor and that person or people. Most doctors will not object to meeting with your "support team."
- Experts agree that if there are conventional therapies that are known to be effective, they should be given first consideration. It would be unwise to choose an experimental treatment over a proven one.
- An experimental treatment may generally be described as:
- A treatment that lacks sufficient documentation regarding its safety and effectiveness for a specific disease or condition.
- A treatment that is not generally taught to doctors in U.S. medical schools.
- A treatment that may not be reimbursable by health insurance providers.
- The best and safest way to try an unproven treatment is by joining an FDA approved clinical trial. A clinical trial is an organized study conducted in people with a health condition to answer specific questions about a new treatment or a new way of using an old treatment. Approved clinical trials are closely monitored and must follow exact steps to help insure patient safety. These studies are designed to find new and better ways to help patients. Eligibility for various phases of clinical trials is dependent upon the type and stage of your condition, and what kinds of therapy, if any, you have already tried.
- For information about clinical trials, including how to locate one, click here.
- Stay away from fraudulent or phony treatments. To learn how to spot one, click here.
Last, but not least: Consent Forms: You will likely be asked to sign a Consent Form before treatment starts. Too frequently, the form is given when you are about to start treatment. It is preferable to get a copy of the form well ahead of any treatment so you have the time to read and absorb the information at your leisure. Medical consent forms are usually printed and look like they cannot be changed. However, you have the right to make any changes you want. For more information about medical consent forms, click here.
- If you have health insurance:
- If you do not have health insurance, and cannot just write a check for the costs, read Uninsured. When you have time, also consider reading: How To Obtain Health Insurance
- If you haven't before, this is a good time to execute legal documents known as Advance Healthcare Directives so that if something happens, your wishes will be honored even if you become unable to communicate for yourself. They are free and do not need a lawyer to execute them.