By Terri Ades, DNP, FNP-BC, AOCN
We remember the phrase from the 1980s. It emerged from a substance abuse prevention program to teach students skills to resist peer pressure and other social influences. When Mrs. Nancy Reagan was visiting an elementary school in California and was asked by a schoolgirl what to do if she was offered drugs, the first lady responded by saying, "Just say no." Upon her husband's election to the presidency, Mrs. Reagan outlined how she wished to help educate the youth, stating that her best role would be to bring awareness about the dangers of drug abuse.
Mrs. Reagan was talking about drug abuse among our youth- she was not talking about the appropriate use of drugs to treat cancer-related pain. Yet patients are hesitant today to take pain-relieving medicines for their pain, and caregivers are reluctant to give them. Many are afraid of addiction. Are their fears related to this campaign from the 1980s? Probably not, but we know it is very difficult to change people's attitudes about taking pain-relieving medicines once those attitudes are formed.
Is cancer pain a problem?
Yes it is. Pain is reported in about 25% of those newly diagnosed with cancer; in 33% of those undergoing treatment; and more than 75% of those with advanced disease. Chronic pain occurs in about 33% of those who have completed treatment.
Is unrelieved cancer pain a problem?
Yes, unrelieved pain can affect every aspect of a patient's quality of life; it can cause suffering, interfere with sleep, and reduce physical and social activity and appetite. And it affects the patient's ability to endure treatment.
Why are patients hesitant to take pain-relieving medicines?
There are a variety of barriers that get in the way of effective pain control. Some of these are patient and caregiver barriers, some are barriers related to the health professionals who prescribe the medications; and some barriers are what we call systems barriers related to prescribing these kinds of medications and the legal issues associated with prescribing them. Here I will talk about patient and caregiver barriers.
First, the words associated with pain management that we often hear -- such as "narcotics," "addiction," and "painkillers" -- are stigmatizing and discourage patients from taking their pain-relieving medicines. These phrases also discourage caregivers from giving the medicine as well. In addition, patients and caregivers often do not understand the differences between addiction, physical dependence, and tolerance. And these misunderstandings contribute to fears about using pain medications.
People often mistakenly think that if they need more of a medicine to control their pain, that they are addicted. Requiring more pain medicine is not addiction. In fact, cancer patients who take appropriate pain-relieving medications for real pain do not become addicted if they are taking their medicine as correctly prescribed by their doctor.
Patients also are concerned that the medicines will cause side effects that cannot be controlled, such as constipation and drowsiness. They don't realize that in this day and age, many side effects can be effectively managed.
They also think that if they need strong pain-relieving medications that their cancer must be getting worse. This can be addressed by having a frank conversation with their health professional and asking "Does my pain mean that my cancer is getting worse?" And if this question is too difficult to ask the doctor, then the oncology nurse is always a good ally. Ask her- she will give you an honest answer.
And the last barrier is also related to talking with the doctor - some patients don't want to be a "complainer" or don't want to distract the doctor from treating their cancer. What patients and caregivers may not realize is that treating pain is part of cancer treatment. It is an expected part of care, and it can give you better quality of life. It is what we call today "holistic care" or "patient-centered care" - treating the whole patient and focusing on what is important to the patient.
So, if you are experiencing pain, know that you have a right to treatment for your pain. There are a number of different pain treatment options available, including non-medicine treatments such as relaxation/meditation, massage, heat, acupuncture, etc., to help with some pain. So, talk to your doctor or nurse. And if you are not satisfied with what they say or do for you, then ask to see a pain specialist. Please don't say no to treatment that may help you feel better.
So, in reference to the "Just Say No" campaign, what Mrs. Reagan did was a good thing, but she wasn't talking to the person with cancer.
For more information on cancer-related pain and the different ways pain can be treated, please visit cancer.org/pain.
Dr. Ades is director of cancer information for the American Cancer Society.