HEALTH RIGHTS HOTLINE Independent Assistance For Health Care Consumers

As a person with pain, you have rights based on California state laws and guidelines for how pain should be treated and controlled. This guide is intended to inform you of those rights and provide information to enable you, with the help of your doctor(s) or other health care provider(s), to understand and choose the type of treatment program that is best for you.

Three Classifications of Pain

Pain is a warning sign that can provide information to help you and your doctor understand your condition. When the pain won't leave or if it gets worse, it is time to look into a program to treat the pain. Efforts to reduce or eliminate the pain may include evaluation and treatment by surgeons or other doctors who specialize in treating the part of the body that is believed to be the source of the pain.

"Acute" pain is usually severe and lasts for short periods of time. It can come from an accident, the onset of illness or disease, or as a result of surgery. Usually, the pain indicates that the body's tissue has been injured. Acute pain usually disappears as healing occurs.

"Chronic" pain stays for a long period of time. Chronic pain often accompanies certain diseases and conditions such as arthritis, migraine headaches, cancer, or sensitivity from an old injury or surgery.

"Intractable" pain occurs because the cause of the pain cannot be removed or otherwise treated. Intractable pain remains even after reasonable efforts have been made to reduce or eliminate it.

Start by understanding your pain

Only you can provide an exact description of your pain. Answers to these questions will help your doctor or other health provider(s) better understand your pain:

• Did something happen to you that caused the pain, such as an injury or fall?
• Where is the pain? When did it begin? How often does it occur?
• Does the pain stay in one place or move through your body?
• On a scale of 1-10, give your pain a number; 1 is low, (very slight pain) 10 is high (unbearable pain).
• What makes the pain feel better? What makes it worse? Is your sleep affected?

Keep a detailed record of your pain and take your notes with you when you meet with your doctor or other health care provider.

In order to understand your condition and treat your pain, your doctor should:

• Do a physical exam and take a history of your condition. (This is a good time to discuss your notes and talk about how the pain is affecting you.)
• Conduct any tests needed to determine the source of your pain.
• Coordinate your care with any other health care providers who are treating you.
• Refer you to a specialist who has experience treating people with pain.

YOU HAVE THE RIGHT TO:

• Complete and current information about your condition, the range of appropriate treatment options and outlook for your condition.
• Participate fully in the decisions affecting your care.
• Give truly informed consent to the treatment plan your doctor is recommending.

Your right to information about your condition, to know what you can expect with your condition and to understand the range of treatment options available.

There are many different ways to treat pain. Your doctor may recommend a variety of options. Regardless of the recommended treatment, your doctor should discuss the risks and benefits of available treatments. Be sure that you understand the source of your pain and your condition (if it has been diagnosed). In addition, it's important that you and your doctor are clear about the goals of treatment. For example, is the goal to cure your condition or just to manage the pain successfully?

Pain treatment may involve the use of drug and non-drug methods, often in combination. These may include:

• Temporary relief such as ibuprofen and aspirin and other "over-the-counter" medications, or salves or braces to support an injury until it can heal. These methods are usually recommended for mild to moderate acute pain.
• Prescription pain relievers, such as anti-inflammatory drugs or opiates to manage moderate to severe pain. Ask your doctor about any precautions you should take or any potential side effects. For example, will you have to limit your driving or take your medication with food?
• Physical therapy or lifestyle changes, such as joining a pain management group or learning meditation or relaxation techniques.

Ask also about possible drug interactions if you are taking more than one drug. Write down what you are told and ask questions if you don't understand something about your medication or your condition.

You may need a referral to a doctor or other health care provider who specializes in the treatment of chronic pain.

After evaluating your condition, your doctor may prescribe stronger medication, such as anti-depressants, nerve block injections, or opiates. Opiates, also known as narcotics, include morphine, codeine, and percodan. Opiates can cause dependence, so you should be sure to discuss the effects of taking these medications with the doctor. If your doctor does not want to prescribe opiates, you have the right to be referred to a doctor who will.

Your doctor should monitor and evaluate the effects of treatment on your condition regularly.

Your right to participate fully in medical decisions affecting your care.

You have the right to refuse treatment such as surgery, nerve destruction, or any drugs including opiates that are offered.

You have the right to choose treatments to manage your pain that do not involve surgery or other "invasive" procedures. Alternative approaches to pain management may include: physical therapy, acupuncture, biofeedback/relaxation techniques, massage, chiropractic care, psychotherapy (to help you manage depression that may accompany chronic or intractable pain), hypnosis, and behavior modification. Lifestyle changes such as stopping smoking and/or alcohol consumption, may also be recommended.

Each person is different and what works for someone else may not work for you. Give the method(s) you have chosen enough time to be effective. Keep an open mind and take the time to find the treatment program that works best for you.

Your right to give truly informed consent to your doctor's recommendation.

To give informed consent, you must understand the types of treatment that are available and agree to a treatment you and your doctor choose. Ask your doctor to give you information about all treatments that may be available or appropriate for your condition, even those treatments he or she does not recommend. Find out why your doctor recommends one treatment over another, and where you can get more information about your condition and treatment choices.

You have the right to be advised if a doctor, hospital, clinic, or other provider proposes to try experimental treatment(s) on you. You also have the right to refuse to participate in research projects.

How can you fully participate in the treatment of your pain?

Learn about your pain and treatments available. Your attitude and being informed is very important.

The following helpful brochures can be ordered free from the organizations listed:

• "Questions and Answers About Pain Control", from the American Cancer Society, Inc., 1-800-ACS-2345 or Internet: www.cancer.org.
• "Managing Cancer Pain", from the U.S. Dept. of Health and Human Services, National Cancer Institute, 1-800-4-CANCER or Internet: www.nci.nih.gov.
• "Managing Your Pain", from the Arthritis Foundation, 1-800-283-7800 or Internet: www.arthritis.org.
• "Managing Your Pain", Top 10 Recommendations from the American Geriatrics Society, 1-800-247-4779 or Internet: www.americangeriatrics.org.

Understand your health care coverage. The treatment(s) you choose may not be covered by your health plan. Many plans do not cover alternative therapies, or may cover only limited numbers of treatments. You may have to pay out of pocket for some of these treatments. Know what your health plan does and does not cover by reading your health plan documents (often called the Evidence of Coverage or Summary Plan Description). In particular look in the "Benefits and Coverage" sections to find out if the treatments your doctor or other health care provider recommends are covered. You should also check the "Exclusions and Limitations" section to understand what is not covered.

Get support from organizations that help people manage pain. There are support groups that provide helpful information and where you can share experiences. You may find these groups through your local public library, medical library, or hospital.

There also are Web sites on the Internet that relate to specific health concerns, including pain management. For links to these sites, visit our Resources & Links page.

Take charge. These basic steps may help you manage your pain:

• Talk to your doctor; ask questions.
• Understand your condition and find a support group.
• Be your own advocate.
• Know your rights. If your care is delayed or denied, consider appealing.

Call the HEALTH RIGHTS HOTLINE.

Health care coverage can be complicated, but you do have rights. The Health Rights Hotline is here to assist you. The Health Rights Hotline is a totally independent, free service which provides information and assistance about your rights as a health care consumer. Experienced counselors will answer your questions and help explain your rights as a person with pain. The Health Rights Hotline also has Action Guides to help you understand your health plan agreement, learn about your health condition, or appeal a health plan or medical group decision. If you need assistance, and live in our service area, give us a call.