NEW YORK--The fear that pain may signal advancing disease often stops patients from telling their physicians about it and getting relief, Nessa Coyle, RN, MS, director of palliative care, Memorial Sloan-Kettering Cancer Center, said in a talk to cancer patients at Cancer Care, Inc. headquarters.
One of the biggest misconceptions, she said, and one that patients may share with some physicians, is that aggressive pain management only occurs at the end of life. "Palliative care is important throughout the course of the disease," Ms. Coyle said. "That is a message which really has not yet been widely integrated into oncology practice. If it had been, people would be less fearful of aggressively managing symptoms."
Patients may also be afraid that if their physician treats the pain, he or she will stop focusing on curative treatment. But pain control is an integral part of cancer treatment, she stressed.
"This is a very important message to get across to cancer patients and to their relatives and friends," she said. "Unless you control the pain, its going to interfere with the treatment, with the patients immune system, and with their ability to participate in activities they enjoy."
At Sloan-Kettering, Ms. Coyle said, patients are asked when they are admitted if they have had persistent pain, if they have received treatment for it, and if they were satisfied with the treatment.
Once admitted, they are asked twice a day, in the morning and afternoon, if they have pain, the level of the pain on a scale of 0 to 10, and if the drugs they are getting provide relief. "Unless you have these ongoing questions," Ms. Coyle said, "patients sometimes slip through the cracks because they dont like to talk about their pain."
Patients should also be asked what they think their pain means, she said, to sort out the misconceptions. "They may think their pain is associated with ongoing disease when actually it is associated with the treatment--or they may think their pain is never going to get better when, in fact, the pain can be controlled."
Putting Up a Stop Sign
Patients should be instructed on the specific steps to take when pain occurs. Ms. Coyle advises her patients to think of a stop sign. "It says, Stop. Ive had this pain before, and I know what I do. I take my medication. I sit down. I do focused deep breathing, and if the pain does not decrease by 50% (with oral medication) in half an hour, I take another rescue dose. If the pain has not decreased in half an hour, I take another rescue dose, and I call my resource person--whoever that may be, a pain nurse or physician."
Patients can use their individuality to develop imagery that will help them manage pain, Ms. Coyle said. "When the pain is escalating, they put the stop sign up. They take the rescue medication. They sit down or lie down, do focused breathing, and then they use the imagery."
A nurse or social worker who is skilled in this process can help the patient develop the imagery that is right for them, Ms. Coyle suggested. They can also make an audio tape to get the patient started using the imagery at home.
Imagery at Work to Control Pain
Nessa Coyle, RN, MS, of Memorial Sloan-Kettering, offered two examples of imagery that her patients used to help them control their cancer pain.
One patient was an artist who had a burning component to his pain and was taking a combination of opioid and adjuvant drugs. When he had an escalating pain episode, he took a rescue dose and imagined cool blue water streaming down through his body and out through his feet where the pain was most extreme.
Her second example was a young person who loved cars. He would take his medications and, while waiting for them to work, would imagine he was behind the steering wheel of his car. He would visualize the speedometer at 100 and, in his mind, turn the steering wheel around slowly and take his foot off the gas pedal.
As the rescue dose took effect, he visualized the speedometer going down from 100 miles per hour to 90 to 80, etc, his mind focused on the speedometer rather than the pain.
Pain and Suffering Not the Same
While medications can ease patients pain, they may continue to suffer, Ms. Coyle said, noting that there is a difference between pain and suffering. "It is the self that suffers," she said. "Suffering is very individualized. The amount of distress can be totally unrelated to the pain. It is related to what is important to the individual and how their life has been altered by the disease process."
Since cancer affects the family support network, that can be part of the suffering people go through too, because the familys lifestyle has also been changed, she noted. "Thats all part of the suffering. And suffering for each of us is very different," Ms. Coyle said.