Most Cancer Pain Is Experienced at the Patient’s Home

NEW YORK—The importance of pain management in the treatment of cancer is well understood now. But a corollary—that most of that pain is experienced at home—has not been as well understood, says Nessa Coyle, RN, MS, director of supportive care programs, Pain and Palliative Care Service, Memorial Sloan-Kettering Cancer Center.

One third to two thirds of cancer patients will experience pain, and being able to manage their pain at home is of the utmost importance, Ms. Coyle said during a Cancer Care, Inc. teleconference.

The fears and misconceptions of patients and their families are the principal barriers to good pain management at home, she said. Patients are afraid that talking to a doctor about pain will distract the doctor from treating the cancer. They are afraid that taking pain medication early on in the course of a disease will mean there will be nothing left for later. They are afraid of becoming addicted and afraid that the pain medications will cause side effects.

"When people have not had their pain well controlled," Ms. Coyle said, "usually, the physician hasn’t understood because the patient hasn’t brought it up."

Patients need to be their own advocates, she said. They need to tell their health care professionals about their pain, and talk about it in concrete language the physician or nurse will understand.

‘This is Where My Pain Is’

She suggested that patients provide the following types of information: "This is where my pain is. This is my pain at its worst [on a 0 to 10 scale]. This is my pain at its best. This is my pain most of the time. This is how the pain interferes with my quality of life. This is the medication I’m on. It takes away half of my pain or all of my pain for 4 hours, but you gave me medication for every 6 hours."

Patients should describe the amount of pain, she said. "They should be able to say, for example, ‘on this medication, for the first 8 hours my pain, on a 0 to 10 scale, is about a 2, and I’m very well satisfied. Nine to 10 hours after taking the medication, the pain goes up to a 6 or 7. I have no side effects from the medication.’ That gives the physician information," Ms. Coyle said.

The notion that talking to a physician about pain will cause the physician to treat the pain but not the cancer is wrong. In fact, the reverse is true, Ms. Coyle said. Pain when not well controlled can often exhaust the body and interfere with the its ability to go through treatment. "For example, it may be too uncomfortable to lie on a table for radiation therapy, and you may be too exhausted to participate in some of the cancer chemotherapy that is being offered," she said.

Some patients do not tell their physicians about their pain because they worry that by acknowledging it, they are acknowledging that the disease is getting worse. They too could be interfering with their treatment, since the cause of the pain may be treatable, Ms. Coyle said.

And she rejected the notion that treating pain early on will mean that nothing is left to fight more severe pain later in the course of the disease. "If someone’s pain increases, we just increase the amount of medication. You can stay on analgesia absolutely indefinitely. You are not going to wear out the drugs. It is not going to harm you. Pain needs to be treated early on. It takes much more medication to get it under control later, and it’s much more exhausting for your body. I’ve been working with people who have been on analgesic drugs for 5, 6, 7 years or longer," she said.

Also, new options are now available to help patients manage their chronic pain at home when the oral route is no longer feasible or effective, she said, including infusion pumps. The patient receives a constant infusion of an opioid either in the veins or under the skin dispensed by a computerized machine worn in a fanny pack or shoulder bag. Patients can press a button and get an extra infusion for breakthrough pain. Patients need not be afraid that they will take too much medication because the device has a lockout timer, Ms. Coyle pointed out.

As for fears about addiction, the evidence suggests that the likelihood of someone without a history of previous drug abuse becoming addicted is under 1%. "Patients are dependent on analgesics for getting adequate pain relief and for no other reason," she said.

Still, she did caution that patients who are taking drugs for chronic pain should never stop taking them abruptly. "Your system has gotten used to them, and you will go through withdrawal. It doesn’t mean that you’re psychologically dependent on the drug. People usually think they have flu or the disease has gotten worse, but you won’t have a craving for the drug; you’ll just feel lousy, shivery, and have diarrhea and aching joints."

Side Effects

Side effects are another thing patients worry about, yet most can be treated successfully, she said. The most common side effect of opioids is constipation. "The hand that writes the prescription for the opioid drugs should also write one for laxatives," Ms. Coyle said. "Usually, we use them prophylactically." There are a variety of other strategies that can be used, including adding roughage to the diet, exercising if possible, and drinking plenty of fluids, she added.

Sleepiness can be another side effect. "Sometimes when analgesia or opioids are increased due to increased pain, the first couple of days a person might a get a little bit more sleepy. But it tends to settle down in my experience," Ms. Coyle said. If it does not, the physician may switch to a different opioid, but more commonly a stimulant is added such as methylphenidate (Ritalin) or dextroamphetamine (Dexadrine), she said.

Patients Who Can’t Communicate

People who cannot communicate verbally are at high risk for poor pain management, Ms. Coyle warned, and there should be a high index of suspicion in such cases, such as in the case of the demented elderly. In these instances, she said, people need to look for behavioral cues such as "if someone is more withdrawn than they used to be, if they moan when you touch them, seem to be guarding an area, aren’t eating as well, or are not sleeping, and if you have family or health care workers who say their behavior has changed. Then you treat and you see if the behavior changes," she said.

At Memorial Sloan-Kettering Cancer Center, Ms. Coyle said, patients are asked about pain when they are admitted and are asked twice a day while in the hospital if they have pain and if their pain regimen is controlling it. If they are treated for cancer on an outpatient basis, they are asked at every clinic visit about pain.

"The importance of integrating pain management into cancer treatment is being recognized, " Ms. Coyle concluded, "and so is providing continuity of care from the hospital to home."