Careful, comprehensive assessment of cancer pain is absolutely essential to finding the best treatments to manage the pain. If you remember that pain is invisible, you will quickly understand how important your role, as the patient, is in assessing pain. What you say is of great importance in this process.
Here are some guidelines to help you work effectively with your health care providers in assessing your cancer pain:
• Put it in writing. If possible, written notes about your pain (see Pain Diary, below) are valuable in giving accurate and comprehensive information;
• Plan to ask questions. It’s important that you fully understand what your health care professional says to you about your pain. Ask questions until you are satisfied that you understand.
• Have a notetaker. Sometimes it’s difficult to talk about your pain, ask questions and take notes on what’s being said to you, all at the same time especially if you are in pain. Bringing a friend or family member to take notes during the discussion about your pain can provide a valuable resource for you once the conversation has ended.
• Make your views heard. Don’t be hesitate to offer an opinion about what may be causing or contributing to your pain. No one knows your body as well as you, and your insights can be valuable to your health care providers.
These are points to consider as you prepare to discuss your pain and its management with your health care providers:
• The location of all of your pains.
• How the pain feels (use descriptive words such as dull, aching, throbbing, stabbing, piercing, pinching, sharp, aching, burning, tingling).
• The intensity of your pain (when it is at its worst) and whether the intensity changes throughout the day and night.
• When you have the pain (all the time or occasionally).
• How quickly the pain comes on (suddenly or intermittently), how long it lasts (a few minutes or several hours), and how often it occurs.
• What makes the pain worse? Describe conditions under which the pain becomes more intense, such as moving, walking, talking, coughing, laying down, eating, going to the bathroom, etc.
• What eases the pain? Be ready to discuss anything that has helped you, including medication(s) you have been using, and the amounts you are taking.
• Medications you are taking. Tell them about your pain medications including any over-the-counter pain relievers, any alternative medications like herbs, and any medications you may be taking for other health conditions not related to cancer.
• Side effects of your pain medications. Tell them what side effects you are experiencing, how the side effects are currently being treated, and if you are satisfied with this treatment?
• Quality of life issues: what impact does the pain have on your quality of life? Can you work, enjoy your family and friends, eat and sleep well? If not, describe how the pain is limiting your activities. Also tell your health care provider(s) what you want from pain management, in terms of the quality of life.
To keep an accurate record of what you are experiencing, consider creating a simple pain diary. You can do this in a notebook, recording information like the date, time or day, level of pain you are feeling, what you did to remedy or alleviate it (i.e., medications taken, use of ice or heat, and so forth), and the outcome of your efforts to control the pain (did the medication work? For how long? Where there side effects?)
Many health care professionals also use various “pain assessment scales” to record patients’ levels of pain. You can use this system, as well, in conversation with your health care provider. Make sure you always use the SAME scale when describing your pain, for consistency and clarity. One of the simplest involves describing your pain level in terms of numbers: “0” means “no pain at all,” and “10” means “the worst possible amount of pain.” The higher the number, the greater the pain. If your health care provider uses a different assessment measuring approach, you may want to use that one. Ask for an explanation of how she or he records patient pain levels.