Living a Healthy Life with Chronic Pain (29 page)

In the doctor-patient partnership, your most powerful tool is the question. Your questions can help you to fill in important missing pieces of information and close critical gaps in communication. Asking questions is part of your active participation in the process of care, a critical ingredient to restoring your health. Accessing answers you understand is a cornerstone of self-management.

Be prepared to ask questions about the diagnosis, tests, treatments, and follow-up not just about your pain but about all your symptoms or other health concerns. Use the following guidelines to ask the right questions:

• Diagnosis
  . Ask what’s wrong, whether there is a known cause, if it is contagious (for example, if you have an infection), what the future outlook (prognosis) is, and what can be done to prevent or manage the condition.
  

• Tests
  . If the doctor wants to perform tests, ask how the results are likely to affect treatment plans and what will happen if you are not tested. If you decide to undergo a test, find out how to prepare for it and what it will be like. Also ask how and when you will get the results.
  

• Treatments
  . Ask if there are any choices in treatments and the advantages and disadvantages of each. Ask what will happen if you are not treated (see
  Chapters 15
  and
  16
  ).
  

• Follow-up
  . Find out if and when you should call or return for a follow-up visit. What symptoms should you watch for, and what should you do if they occur?
  

To ensure you really understand everything, briefly repeat key points back to the doctor or other provider. For example, “You want me to do this set of exercises two times a day, in the morning and in the evening. Is that right?” Or “You want me to take this medicine three times a day.” This gives the provider an opportunity to quickly correct any misunderstanding and miscommunication.

Sometimes it is hard to remember everything. You may want to take notes or bring another person to important visits. You can even tape-record the visit if the medical professional grants permission. If you don’t understand or remember something the provider said, simply state that you need to go over it again. For example, “I’m pretty sure you told me some of this before, but I’m still confused about it.” Don’t be afraid to ask what you may consider a stupid question. Such questions are important and may prevent misunderstanding.

At the end of a visit, you need to clearly understand what to do next. This includes making appointments for treatments, tests, and follow-up visits. You should also know any danger signs and what you should do if they occur. If necessary, ask your provider to write down instructions, recommend reading material, or indicate other places you can get help.

If for some reason you can’t or don’t intend to follow the provider’s advice, let her or him know. For example, “I don’t want to take the aspirin. It gives me stomach problems,” or “My insurance doesn’t cover that much therapy. I can’t afford it,” or “I’ve tried to exercise, but I can’t seem to keep it up.” If your provider knows why you can’t or won’t follow advice, she or he may be able to make other suggestions. If you don’t share the barriers to taking action, it’s difficult for your provider to help.

Sometimes you may want to see another provider or have a second opinion. Asking for a second opinion can be hard, especially if you have had a long relationship with your provider. You may worry that asking for another opinion will anger your provider or that he or she will take your request in the wrong way.

Providers are seldom hurt by requests for a second opinion. If your condition is complicated or difficult, the doctor may have already consulted with a colleague or specialist (or more than one). This is often done informally. Asking for a second opinion is perfectly acceptable, and providers are taught to expect such requests. However, if you find yourself asking for third, fourth, and fifth opinions, this may be unproductive.

Ask for a second opinion by using a nonthreatening “I” message:

In this way, you have expressed your own feelings without suggesting that the provider is at fault. You have also confirmed your confidence in your provider by asking for his or her recommendation. (However, you are not bound by this suggestion; you may choose to see anyone you wish.)

Let your providers know how satisfied you are with your care. Everyone appreciates compliments and positive feedback, especially members of your health care team. Your praise can help nourish and console these busy, hardworking professionals. Letting them know that you
appreciate their efforts is one of the best ways to improve your relationship with them—plus it makes them feel good!

Likewise, if you do not like the way you have been treated by any members of your health care team, let them know. Remember, they are not mind readers. They cannot improve the relationship if they don’t know there’s a problem.

Many decisions in medical care are not clear-cut, and often there is more than one option. Except in life-threatening emergencies, the best decisions depend on your values and preferences and should not be left solely to your doctor or other health care provider. For example you might say, “I’m very conservative about taking strong medications. What’s a reasonable period of time for me to try to address these symptoms with exercise, improving my diet, and relaxation, before I start taking this new medication?”

To make an informed choice about a proposed treatment, you need to know its cost and risks. This includes possible complications such as drug reactions, bleeding, infection, injury, or death. It also includes personal costs, such as absences from work, as well as financial considerations, such as how much of the proposed treatments your insurance will cover.

You also need to understand the likelihood that the proposed treatment will benefit you. Ask how it may or may not relieve your pain and other symptoms or improve your ability to function. Sometimes the best choice may be to delay a treatment decision in favor of “watchful waiting.”

No one can tell you which choice is right for you. But to make an informed choice, you need information about your options. Informed choice, not merely informed consent, is essential to quality medical care. The best medical care for you combines your provider’s medical expertise with your own knowledge, skills, and values.

Making decisions about treatments can be difficult. For some suggestions on how to make decisions, see
page 21
, and see
Chapters 17
for help on how to evaluate new treatments.

Many health care providers these days work in larger systems such as clinics or hospitals. Appointments, billing, and telephone and e-mail protocol are often decided by someone other than your provider.

If you are unhappy with your health care system, don’t just suffer in silence; do something about it.Find out who is running the organization and who makes decisions. Then share your feelings in a constructive way by letter, phone,
or e-mail. Most health care organizations are concerned about their patients and therefore usually respond.

People who make the biggest decisions about health care tend to be removed from the people who seek treatment. It is easier to express our feelings to the receptionist, nurse, or doctor than it is to find an administrator. Unfortunately, the people we most frequently see during our appointments have little or no power in larger decisions about the way the system functions. However, these people can tell you whom to contact. If you can form a close partnership with your providers, together you will be better able to make the system more responsive.

If you decide to write or e-mail, keep your letter short and factual. Tell what actions you would find helpful. For example:

The following are some typical complaints about the health care system, as well as a few hints for addressing them. These problems and suggestions will not apply to all systems or countries, but they do apply to many.

• “I hate the phone system.”
  Often when you call for an appointment or information, you reach an automated system. This can be frustrating but you cannot change this. However, keep in mind that phone systems do not change often. Once you memorize the numbers or keys to press, you can move more quickly through the system. Sometimes pressing the pound key (#) or 0 will get you to a real person. Once you do get through, ask if there is a way to do this faster next time.
  

• “It takes too long to get an appointment.”
  Ask for the first available appointment. Take it. Then ask how you can learn about cancellations. Some systems are happy to call you when they have an empty spot. In others, you may have to call them once or twice a week to check on cancellations. Ask the person making the schedule what you can do to get an earlier appointment. Ask for a telephone number so you can reach the person making appointments directly. Some systems are now setting time aside each day for same-day appointments. If this is available, ask when you should call to schedule one. It is usually early in the morning. If your pain or other symptoms have changed and you believe you must see a doctor right away, tell the scheduler. If nothing is available, ask what you need to do to see someone sooner rather than later. No matter how frustrated you are, be nice. You want the person who schedules appointments to be on your side and
  you will feel better if you speak pleasantly and do not lose your temper.
  

• “I have so many providers; I do not know whom to ask for what.”
  When you see any member of your pain team, ask who is in charge of coordinating your care. It will most likely be your primary care doctor or nurse practitioner. Call the provider to confirm that he or she is coordinating your care. Ask how you can help make coordination as efficient as possible. Let this coordinating provider know when someone else orders a test or new medication. Keeping your primary care provider informed is especially important when providers are not in the same system and do not share electronic medical records (EMRs).
  

• “What is an electronic medical record (EMR) anyway?”
  In much of the United States and in parts of Canada, most medical information is maintained on a secure computer system, so your records can be viewed by all providers in the same system. You should know what information is on the system. Sometimes the EMR has just test results; other times it has test results and medication information. Sometimes it has all the information the organization has collected about you.
     An electronic medical record is just like a paper record: it does no good if your providers don’t read it. For example, when you have a test, the doctor ordering the test will know when the results are ready. However, your other doctors may not know anything about the test unless you tell them to read the results. Learn about the medical records system so you can help all your providers use it more effectively.
     In the United States, Canada, and many other countries, you have the right to a copy of almost any information in your medical record. Ask for copies of all your consultations, lab, and other test results so you can carry them with you from one provider to the next. In this way, you know that the information will not get lost.
  

• “I can never talk to my doctor.”
  It can be difficult to get a provider on the phone, but many systems now have ways for doctors, nurse practitioners, and patients to communicate by text or e-mail. The next time you see your provider, ask if your healthcare system provides these options. In the United States, many health systems have a way to quickly process routine things like medication refills. It may mean calling a special number or talking to the nurse. Learn how to do this.
     A medical emergency is important. Do not waste time trying to contact your doctor. Rather, go to a hospital emergency department or call 911.
  

• “I have to wait too long in the waiting room or the examination room.”
  Emergencies happen sometimes, and this can cause a wait. If your schedule is tight and a delayed appointment will cause problems for you, call before you head to the appointment and ask if the doctor is running late and if so,
  how long you will have to wait. If your doctor is running late, you can decide whether to bring a book to read or ask to reschedule. If you show up for your appointment and find there’s a wait, don’t get upset. Instead, let the receptionist know that you are going to step out to run a quick errand nearby or for a cup of coffee. Tell them you will return within a specified amount of time.
  

• “I don’t have enough time with the provider.”
  This may be a systemic problem. Someone other than your provider often decides how many patients to schedule and for how long. The decision is sometimes based on what you tell the booking clerk or scheduler. If you say you need a blood pressure check, you will be given a short visit. If you say you are very depressed and cannot function, you may be given a longer appointment. When making the appointment, ask for the amount of time you want, especially if it is more than 10 or 15 minutes. Be prepared to make a case for more time. You can also ask for the last appointment in the day. You may have to wait a while, but at least the provider will not be pressured because there are more patients to see.
     Once you are with a provider and you request more time than is allotted, you make other people wait. An extra five minutes may not seem like much. However, a doctor often sees 30 patients a day. If each one takes five extra minutes, this means that the doctor has to work an extra 2½ hours that day! Those little bits of extra time add up.
  

If you think that things should not be this way and it is not fair to place this burden on the patient, we wholeheartedly agree. Health care systems should change to be more responsive and patient-friendly. A few systems in the United States are already doing this. In both the United States and Canada, patient groups are advocating for more accessible services that are especially appropriate for people with chronic pain. In the meantime, we offer these suggestions to help you deal with a difficult situation:

• If something in the health care system is not working for you, ask how you can help make it work better. If you learn how to navigate the system, you can often solve or at least partially solve your problems.
  

• Be reasonable. If the system or your provider sees you as a difficult person, getting what you want out of the system may become more difficult for you.