Arthritis and Joint Disease Patient Education Information

This guide is about how to work with your doctor to make good decisions about your treatments. Most forms of rheumatic diseases cannot be cured. However, there are many useful treatments that can reduce your pain and stiffness, and improve your ability to do the things you want. Arthritis and other rheumatic diseases vary from person to person, and even over time in the same person. The treatments that work best for another person may not work for you. The treatments that work best for you right now may change over time. Each treatment has its own advantages and disadvantages. You and your doctor must weigh them against each other when you choose which treatments to try for your arthritis. The only sure thing is that you will have to make many decisions about arthritis treatments over the years. For these reasons, it is important for you and your doctor to talk about your goals for treatment, your willingness to risk various side effects, and your preferences for type of treatment. In this guide we will give you some tips to help you make decisions and talk with your doctor. Other guides review the benefits and drawbacks of treatments for specific rheumatic diseases.  

How to make decisions about arthritis treatments.

There are good ways and bad ways to make decisions. Sometimes, people with an illness make decisions about their treatments with less care than they would when choosing a new car or refrigerator. This may be due to lack of knowledge, embarrassment about questioning the doctor, anxiety about being sick, trouble talking with the doctor, or feeling that something must be done right away. This guide suggests questions to ask any time you make decisions about medical and surgical treatments. Other guides review the benefits and drawbacks of individual treatments.

Do I need to change my treatment or can I keep on doing the same thing for a while?

Do you or your doctor think your arthritis is getting worse? If so, you should seriously consider a change, and discuss it with your doctor. You must decide how much discomfort you will accept.

How much time do I have to make a decision?

For most situations in arthritis, you have time to think about the pros and cons of a change. Ask your doctor what will happen if you do nothing new for a while longer. Chances are, you have more time for most decisions than you think.

What are my options?

The doctor may suggest one or more treatments based on his or her experience and knowledge of you. At this point, it is useful to find out all your choices, and ask your doctor to discuss them. Sometimes you general health may limit your options. For instance, if you have a liver problem, some drugs may make it worse. It can help to get more information from another doctor (second opinion), books and pamphlets, and other health professionals.

What are the benefits and drawbacks (or risks) to me for each option?

All treatments are not alike. Each has its own benefits and drawbacks, and likelihood of working. If there is more than one possible treatment, your preferences become very important. However, your doctor will not know your preferences unless you speak up. For example, if you have to take medications, do you prefer one that might cause nausea over one that might cause hair loss? Ask what are the chances that each treatment will work and how long it usually takes to work. Ask what kinds of problems you might have, including side effects, costs, and inconveniences.

What options are modifiable?

Even if options are limited, don't be afraid to ask if you can change them to suit you better. You may be able to take a drug less frequently or in smaller amounts than recommended. You may be able to substitute one exercise for another, or do it once a day instead of twice. Even small changes like this can make a treatment more acceptable.

What are the benefits and drawbacks to others, such as members of your family?

A successful treatment may give you better health and more energy for family, work, and social activities. You may need to rely less on others for help. On the other hand, some treatments may place a burden on your budget, or increase your reliance on others. For instance, you may need transportation to the hospital more often. You might need help from others for a few months after joint replacement surgery.

Which treatment is best, and is it good enough?

After consider the options, you will choose one that seems the best. At this point it is good to review for yourself how likely it is to achieve your goals. Also, how likely is it to cause a problem, such as side effects, expense, or inconvenience? If you are not sure if the top choice will work out, you might be able to start it on a trial basis.

What do I need to do to give this treatment the best chance of success?

Being committed to a decision will help you stick to it. First, make sure you understand from the doctor how to carry out the treatment correctly. How, and how often, do you take or do it? How will you know it is helping? How long should you give it a try? What do you do if it does not seem to work? Second, review the drawbacks to this treatment, and make plans to overcome them. Do you need help paying for a treatment? A reminder system to take all your pills? Transportation, or help from others? Do you need to talk to others to increase your motivation? A realistic look at the challenges of the course you have chosen can do much to help you cope with set-backs when they occur.

What happens if the treatment does not seem to be working?

You may be right in thinking the treatment is not working. But first, ask a few questions to be sure. Have you given it enough time? Have you carried out instructions faithfully? Do you know what signs of improvement to look for? You should contact your doctor when you think that a treatment is not working. You may have to consider new options (back to the first question). Communicate honestly with your doctor about your experience with this treatment. It will help him or her judge what are your next options. And give your new decision all the care you gave this last one. It's your health, and no treatment is minor.
Improving communication with your doctor: Ask questions.

Patients' rights and responsibilities.
You have the right to full information about your health and medical treatments, including treatment options. You should expect the doctor to give you enough time to ask questions and get answers that you can understand, so you can participate in decisions about your care. You also have the responsibility to think about what you want, to give the doctor clear information, to ask questions, and to tell the doctor when you do not understand.

Ask more questions.

The best way to improve communication with your doctor is usually to ask more questions. Most people do not ask enough. The results? Most patients want more information than they get, and doctors think that patients understand more than they usually do. If you do not ask questions, the doctor will usually assume that you understand, or that you do not care to know more. He or she cannot be expected to guess what your concerns are. Most doctors appreciate a patient who asks good questions, and are happy to answer.

What is a good question, and how do you ask it?
A good question is specific, direct, timely, well thought out, and gets results.
  • Be specific.
    If you ask, "How am I doing?" you may hear, "Not too bad." If you really want to know how serious your condition is, or how long the treatment will last, then ask that.
  • Be direct.
    Do not hint. Use words like what, why, and how. You are more likely to get a satisfactory answer if the doctor does not have to guess what you want.
  • Be timely and thoughtful.
    Think of your most important questions before your visit. Write them down, and rehearse them if it helps. Tell your doctor at the beginning of your visit that you have some questions you would like answered. Ask when you should bring them up. This gives the doctor a chance to organize his or her time.
  • Get an answer.
    A good question gets a clear answer. If the doctor has not answered at all, repeat the question. If the answer is not clear, ask again. Ask for details or simpler words if that is the problem.
What gets in the way of asking questions, and how do you handle it?
Most people, including many physicians, find it difficult to ask questions when they are patients. Here are the most common reasons.
  • Forgetfulness.
    This is common, as time is often limited and patients are anxious in a medical visit. Write down your most important questions before the visit, and bring them with you. Ask new questions right when you think of them.
  • Embarrassment.
    Many people are embarrassed talking about personal matters with a doctor. Because arthritis affects such things as going to the bathroom, having sex, or feeding yourself, you have good reasons to discuss such concerns with your doctor. Feeling comfortable with your physician may take time. His or her job is to help you live day to day with a chronic disease.
  • Medical jargon.
    Many words in medicine are technical. Ask for an explanation of any words you don't understand. Ask if you can repeat something in your own words to be sure that you do understand. Doctors may think that they have explained something, and will not know unless you ask them. Don't be afraid of asking questions. There are no dumb questions.
  • Doctor is too busy.
    Doctors get interrupted, and sometimes act rushed. Remember, your time is as important as the next patient's time. If you plan ahead and bring up your main questions at the beginning, the doctor can organize the visit so that you get your answers. Also, you can ask for booklets, a followup appointment, or a chance to talk with another caregiver, such as a nurse, therapist, or social worker.
  • Feeling intimidated.
    You have a right to answers to your questions, even if the answer is something like "I don't know until we do more tests." If a doctor doesn't answer your questions, repeat them.
  • Fear of the answers.
    It is natural to fear the worst when you have a medical problem. However, the worst is rarely true. Most problems in arthritis are manageable. Don't let your fears get in the way of understanding what you need to do. Taking steps to control a problem is the best way to reduce your fears in the long run.
  • Question is not important.
    Anything that is important to you is worth mentioning.
Management of a medical condition involves doctor and patient in a partnership. Information and decisions about treatments need to be shared to produce the best results. The worksheets that follow can help you compare treatments that you might be considering. Other guides review the benefits and drawbacks of treatments for specific rheumatic diseases. These materials should help you and your doctor make decisions about your arthritis treatment.

Lawren Daltry, DrPH
Robert B. Brigham Multipurpose Arthritis and Musculoskeletal Disease Center

Medical decision-making guide

For each medical decision, you can fill out a worksheet to help you think clearly. For example:

STEP 1.
What are my goals for the treatment?
What do I want to get out of it? What can I expect, realistically, to get out of it? Make sure you are clear on this and share it with your doctor. You are less likely to be disappointed if you and your doctor agree on what you can expect.
My goals and expectations:

STEP 2.
What are my treatment options?
List as many as you can think of. Use the doctor, your friends and family, and written information (for example, from the Arthritis Foundation) to help you think of options.
Options:

STEP 3.
For each option, consider the likelihood that you will achieve your goals and expectations. You might think in numbers (90% success rate) or words (such as 'fair' or 'excellent'). Are there other benefits besides health, such as feeling better about yourself? What are the drawbacks or each treatment, including side effects, costs, and inconveniences? Get this information from your doctor and other sources. Then compare options. If you have blanks in the worksheet, you probably need to get more information before you make a decision.

WORKSHEET QUESTIONS
Example: Jane Doe
Benefits and Drawbacks of Treatment: ABC



How likely is it to be successful? 
70% chance of less pain.

What will it do for me? 
Probably able to be more active at work and with the family.

How long will it take to work? 
2-3 months

Side effects or medical complications: What are they? How likely are they? Will the treatment cause any pain or discomfort? 
Increased risk of infection and liver problems. Chance of hair loss, but problems would stop if I stop the medication.

Costs: How much will this cost, and can I afford it? 
$140/month, with 80% covered by insurance. Transportation and parking to the clinic.

Inconveniences: Extra trips to the doctor, a hospital stay, time-consuming actions every day? 
Monthly visits for the next 6 months. Liver biopsy and blood tests every so often.

How will this affect my family, friends, and activities? 
Family will like me better if I have less pain and my mood is better. Spouse must take off work to drive me to clinic appointments.

How is my motivation for this treatment? 
Moderate to high.

Other: What else might affect my decision? 
My family wants me to try it.

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