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Aware-RSD

Your Rights

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Pain Care Bill Of Rights
As a Person with Pain, You Have The Right To:
 

have your report of pain taken seriously and to be treated with dignity and respect by doctors, nurses, pharmacists and other healthcare professionals.

have your pain thoroughly assessed and promptly treated.

be informed by your doctor about what may be causing your pain, possible treatments, and the benefits, risks and costs of each.

participate actively in decisions about how to manage your pain.

have your pain reassessed regularly and your treatment adjusted if your pain has not been eased.

be referred to a pain specialist if your pain persists.

get clear and prompt answers to your questions, take time to make decisions, and refuse a particular type of treatment if you choose.


Although not always required by law, these are the rights you should expect, and if necessary demand, for your pain care.

 


 

How serious is the pain problem?

Pain is a major healthcare crisis in the United States. More than 50 million Americans suffer from chronic pain caused by various diseases and disorders, and each year another 25 million experience acute pain as a result of injury or surgery.

Although most pain can be relieved or greatly eased with proper pain management, the tragedy is that most pain goes untreated, undertreated, or improperly treated. No one should have to suffer needlessly when the knowledge and skills are available today to manage most pain.

If left untreated, chronic pain can prevent you from having a full and meaningful life. Once your pain is under control, your body and mind will be less stressed. You'll be able to sleep better, focus on work, enjoy relationships with family and friends, and take part in social activities. If your pain has been caused by an injury or surgery, your recovery may be faster once your pain is managed.

Finding good pain care and taking control of your pain can be hard work. Learn all you can about pain and possible treatments. Be persistent, insist on your rights, and don't give up.

 


If most pain can be eased, why do so many people with pain suffer needlessly?

Many of us have beliefs about pain that are simply not true and prevent us from getting the relief we deserve. The truth is:

Pain is not something you "just have to live with." Treatments are available to relieve or lessen most pain. If untreated, pain can make other health problems worse, slow recovery, and interfere with healing. Get help right away, and don't let anyone suggest that your pain is simply "in your head."

Not all doctors know how to treat pain. Your doctor should give the same attention to your pain as to any other health problems. But many doctors have had little training in pain care. If your doctor is unable to deal with your pain effectively ask your doctor to consult with a specialist, or consider switching doctors.

Pain medications rarely cause addiction. Morphine and similar pain medications, called opioids, can be highly effective for certain conditions. Unless you have a history of substance abuse, there is little risk of addiction when these medications are properly prescribed by a doctor and taken as directed. Physical dependence-which is not to be confused with addiction-occurs in the form of withdrawal symptoms if you stop taking these medications suddenly. This usually is not a problem if you go off your medications gradually.

Most side effects from opioid pain medications can be managed. Nausea, drowsiness, itching, and most other side effects caused by morphine and similar opioid medications usually last only a few days. Constipation from these medications can usually be managed with laxatives, adequate fluid intake, and attention to diet. Ask your doctor to suggest ways that are best for you.

If you act quickly when pain starts, you can often prevent it from getting worse. Take your medications when you first begin to experience pain. If your pain does get worse, talk with your doctor. Your doctor may safely prescribe higher doses or change the prescription. Non-drug therapies such as relaxation training and others can also help give you relief.

 


How do I talk with my healthcare provider about pain?

1. Speak up! Tell your doctor, nurse or social worker that you're in pain. It is not a sign of personal weakness to tell them about your pain. Pain is a common medical problem that requires urgent attention. So don't be embarrassed or afraid to talk about it.

2. Tell your doctor, nurse or social worker where it hurts. Do you have pain in one place or several places? Does the pain seem to move around?

3. Describe how much your pain hurts. On a scale from 0 to 10, zero means no pain at all and 10 means the worst pain you can imagine. In the past week, what was the highest level of pain you felt? When did you feel it? What were you doing at the time? When did it hurt the least? How bad does it hurt right now?

4. Describe what makes your pain better or worse. Is the pain always there, or does it go away sometimes? Does the pain get worse when you move in certain ways? Do other things make it better or worse?

5. Describe what your pain feels like. Use specific words like sharp, stabbing, dull, aching, burning, shock-like, tingling, throbbing, deep, pressing, etc.

6. Explain how the pain affects your daily life. Can you sleep? Work? Exercise? Are you able to do activities with family and friends? Can you concentrate on tasks? How is your mood? Are you sad? Irritable? Depressed? Do you feel unable to cope?

7. Tell your doctor, nurse or social worker about past treatments for pain. Describe any medical treatments you've had such as medication or surgery, and mention other approaches you've tried. Have you done massage, yoga or meditation? Applied heat or cold to the painful areas? Exercised? Taken over-the-counter medications, or supplements such as vitamins, minerals, and herbal remedies? Tried other treatments? Explain what worked and what didn't.

Tip: Write down your questions for the doctor or nurse before an appointment. People often get nervous and forget to ask all their questions. Take notes so you can review them later. If possible, bring along a family member or friend to provide support, help take notes, and remind you of what was said.

 


How can I get the best results possible?

Take control. It's your responsibility to tell your doctor you're in pain, take part in planning your treatment, follow your pain management plan, ask questions, and speak up if treatment isn't working. If necessary, seek other help. Be persistent until you find what works best for you.

Set goals. Once you've found a doctor you trust, decide with your doctor on some realistic goals for things you most want to do again - for example, sleeping, working, exercising, enjoying sexual relations, etc. Begin working on the easiest goals first.

Work with your doctor or nurse to develop a pain management plan. This might include a list of medications, when to take them, and possible side effects. It might include therapies other than medication. Make sure you understand the plan and carry it out fully. If you don't, you are less likely to get relief.

Keep a pain diary. Write down information about your level of pain at different times, how you're feeling, and what activities you're able to do or not do. Keep a record of medications you're taking or any non-drug treatments. The diary will help you see what's working and measure progress. Bring your diary on visits to the doctor.

Ask your doctor or nurse about non-drug, non-surgical treatments. These could include relaxation therapy, exercise, massage, acupuncture, meditation, application of cold or heat, behavioral therapy, and other techniques.

Ask your doctor or nurse about ways to relax and cope with pain. The way you feel about your pain can actually affect the pain itself. Your pain may feel worse if you are stressed, depressed, or anxious.

If you have questions or concerns, speak up. If you're worried about medications or other treatments, ask your doctor or nurse. If your treatment is not working, insist that your pain be reassessed and new treatments offered. Be polite, but be firm.

If you're going to have surgery, ask your doctor for a complete pain management plan beforehand. Ask what medications you will receive before the operation to minimize pain later, and what will be available for pain relief afterwards.

If you're a patient in a hospital or other facility and you're in pain, speak up. Ask a doctor or nurse for help. If you don't get help right away, ask again. If you still don't get help, ask to speak to the patient advocate or representative. Most likely the doctor or nurse will respond, but be sure to insist on effective pain care without delay.

Pace yourself. Once you experience some degree of control over your pain, don't overdo it. Your body may be out of condition if you have been suffering pain for awhile. Take time to gradually build up to normal activity.

If you're not satisfied with your pain care, don't give up. Does your doctor listen to you? Is your doctor able to assess and treat your pain? Are you getting adequate care? If after a reasonable time the answer is "no," find another doctor or pain care program.

 


Where can I find help?

If you want to learn from people in other organizations who understand particular types of pain:

For chronic pain, contact the American Chronic Pain Association at www.theacpa.org or call 1-916-632-0922.

For cancer pain, contact Cancer Care at www.cancercare.org or call 1-800-813-HOPE, or contact your local American Cancer Society office.

For a list of organizations that specialize in a particular disease or disorder, contact the American Pain Foundation at www.painfoundation.org or call 1-888-615-PAIN.

If you want to find a pain specialist:

Ask your regular doctor, if you have one, for a referral to a good pain specialist or pain clinic.

Ask family members, friends and co-workers who have suffered from pain for a recommendation.

Contact the largest local hospital or medical school in your area and ask if they have a pain team or know of a good local pain specialist or pain clinic.

If you are under a managed care program, call your representative or caseworker and ask for their list of approved pain specialists.

Call a local hospice, even though you may not need hospice care, and ask them to suggest doctors who are good at pain management.

Tip: Ask if the doctor belongs to any pain-related medical societies or has had special training or certification in pain medicine. Check the American Pain Foundation website or call us for information about professional organizations and certifying programs