How you can help

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Become knowledgeable about how the pain medicines work, listen to the patient, and be responsive.

A family member or friend can have a dramatic impact on the success or failure of a pain management program for a person with cancer. The most important thing for a caregiver to remember is that pain is an individual experience that an observer cannot estimate. If people who are in pain think that others will not believe them, they may be less willing to report their pain–and remember untreated pain will often become harder to control.

Empower the person to expect pain control. You can encourage your loved one to expect and demand pain control. By believing your loved one and validating his or her pain, you empower the person to ask for the help he or she needs. Become knowledgeable about pain management and believe that your loved one�s pain can be controlled. Providing your loved one with optimism can empower him or her to make pain-control a goal.

Be an advocate for the person. For people who are reluctant to express their needs for pain control, you can be the best advocate for insisting on good pain management. In some cases, your loved one may have to rely on you to be demanding, if necessary, to get the pain relief he or she deserves. Don�t assume the doctor or nurse knows that the patient is in pain simply because you know the person is suffering. Not everyone with cancer experiences pain. Bring up the subject with the doctor or nurse. Tell them you know pain can be treated and you want to work with them to devise a pain management plan. If the doctor or nurse doesn�t seem able to help, request a meeting with a pain management specialist. Most hospitals have one, but if yours doesn�t, find out if there are pain clinics in your area by asking the hospital social worker, calling the National Cancer Institute�s Cancer Information Service (1-800-4-CANCER), or searching the American Pain Society�s online directory (www.ampainsoc.org/facility/finding.htm).

You may want to involve other professionals as well. A physical therapist can provide information on appropriate exercises and massage techniques that can help the person be more comfortable and move around more easily and safely. Social workers can tell you about resources in your community, such as support groups and pain clinics. A pharmacist can discuss drug interactions and side effects. Ask your physician for referrals.

Learn how to assess pain levels. A comprehensive assessment is an important part of determining the best treatment for a person�s pain. A thorough discussion of how a person�s pain is typically assessed is located on the “Assessing Cancer Pain” page of this website.

The most important part of assessing pain levels is the “patient self-report.” Many tools have been developed to help people describe and measure their pain and pain management is enhanced when the patient (or caregiver) uses these pain measurement tools [[suggest link to “Assessing cancer pain” page]]. Studies have shown that when patients are educated about cancer pain and learn to use a pain diary and talk to members of their health care team, they receive better pain relief ( de Wit R, et al., Pain 1997;73:55-69).

As a caregiver, you can be extremely helpful in using these pain measurement tools. You can help the patient keep a pain diary, both by recording what the patient reports as well as recording your own observations. For example, you may offer information regarding the cues of unspoken pain described on the “What you should expect” page of this website. You may also want to note your observations of the patient�s level of pain, type of pain (breakthrough or persistent), response to pain, ability to move, appetite and sleeping habits, and changes in social interactions.

Help with the plan prescribed for managing pain. Patients are typically prescribed a regimen of various medications to be given at different times to manage persistent cancer pain as well as breakthrough cancer pain. (Click on the Pain Medication Delivery page for a detailed discussion.) The plan may also include non-drug methods of pain relief, and ideas for handling potential side effects. Help the patient understand and implement what the doctor has prescribed, remind him or her when to take a medication, and keep records to help with doctor visits.

Understanding the regimen for pain management is crucial for it to be effective. People with cancer can frequently be overloaded with information regarding the treatment for their disease. They may not always be able to absorb all of the information they need to manage their pain.

Ask the doctor or pain specialist:

� What is the purpose of each medication and how does it work? How do the drugs interact with each other? What side effects should we watch out for? Will we have trouble getting any of these drugs at our pharmacy?� How do I administer each medication? If it�s a pill, should it be taken on an empty stomach or with food? Can the pill be crushed or not? What other types of drug delivery systems are available and what are their advantages? For example, what are the advantages and disadvantages of DuragesicÒ (the transdermal patch) for persistent pain and what are the advantages and disadvantages of ActiqÒ (the oral transmucosal delivery system) for breakthrough pain? If the medication is to be injected, learn how to administer it. If it would help, ask if a nurse can come to the house to check that you�re administering the medication right.

� How is the medication for persistent pain different from the medication for breakthrough pain? When should each of the medications be taken? What should be done if the persistent pain returns, but it is too early for the next dose? What if the patient is not getting relief from breakthrough pain quick enough?

� What should be done if the pain is not gone even though the pills are being taken as prescribed and as early as allowed? Can more medicine be taken, or should the doctor be called?

� What happens if pain wakes the person in the middle of the night?

� What if we skip a dose by accident?

� What side effects should I watch for and when should I call for professional help?

� What number do I call if I have questions during and after office hours?

Medication side effects

Some patients experience side effects when they take pain medicines. Tell the doctor about any side effects the person is experiencing. Nausea, constipation, and drowsiness are common and can be treated. Nausea usually lasts only for the first few days after starting a medicine. The doctor can prescribe medicine to help stop the nausea. For constipation, the doctor or nurse should recommend a stool softener or laxative. Drinking lots of liquids, eating more fruits and vegetables, and exercising may also help reduce constipation. Drowsiness may occur during the first day or two after starting a medicine. It usually doesn�t last too long, but if it is a problem, talk to the doctor or nurse. More serious side effects, such as trouble breathing, dizziness, and rashes, are rare. If they occur, call the doctor right away.

Pain medicines usually need to be taken on a regular fixed schedule, rather than waiting until the patient feels pain. You can help by setting up a system of reminders. Use an alarm that rings in a central location of the house or on your or the patient�s wrist when medications should be taken. Set out a week�s worth of medicine in a dispenser that separates the pills by day and time. These trays are available at the pharmacy. Make sure that all medications, including breakthrough pain medications, are stored safely, but that they are easily available to patients when they are needed. Use the same pharmacy consistently so the pharmacist becomes familiar with the medication plan, stocks the required medicines, and can help with side effects. Call the doctor for a refill well before you run out of medication. At the least, a 3-day supply of pain medicine should be available at all times.

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