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A partnership between patient and case manager
Treat pain like any other chronic condition
An estimated 50 million Americans — some of them your patients — live with chronic pain caused by disease, disorder, or accident, according to the American Academy of Pain Management.
Chronic pain represents a major health care problem and affects every aspect of the lives of people with pain. Consider these statistics from a patient survey recently released by the American Pain Foundation:
"Chronic pain, like any other chronic disease, has an impact on all aspects of a person's life. When people have a set of symptoms that can't be cured, it affects them physically, emotionally, and socially," says Dennis C. Turk, PhD, John and Emma Bonica professor of anesthesiology and pain research at the University of Washington in Seattle. Turk is past president of the American Pain Society.
Chronic pain management should be a partnership between the patient and the case manager, Turk says. "Since there is not a cure for chronic pain, self-management becomes very important. People have to work with their health care providers to find a way to manage their pain," he adds.
The person with pain has to become part of the treatment team. Unless they have an active role, it doesn't matter what else health care providers do, adds Penney Cowan, executive director of the American Chronic Pain Association, based in Rocklin, CA.
Case managers should help their clients understand the solution to their pain involves much more than just a medical one, Cowan says.
"There's not just a medical solution to diabetes. People with diabetes have to be responsible for their diet, medication, monitoring their blood sugar levels. We empower them to control their disease and give them the tools for doing so," she says.
The first step in helping people learn to manage their pain is to believe that their pain is real, Cowan suggests.
"Pain is invisible and there's no way to physically document the pain someone is having. The only way case managers can help people live with it is to validate them and believe that they have the pain," she says.
Many patients are concerned that people don't believe their pain is real, since there are no objective signs that characterize pain, Turk asserts. He points out that 86% of people with back pain and 98% of people with chronic headaches exhibit no physical pathology to indicate pain.
People with pain feel so strongly about convincing health care providers that their pain is real that the pain is all they can talk about, Cowan adds. "This represents their desperation to get people to believe what they are saying about their pain," she says.
Concentrate on the entire person and not just the pain, Cowan suggests.
"Pain is not a person's whole identity. It's a small piece of who they are. That's why we prefer to call them people with pain, rather than chronic pain patients," Cowan says.
Take time to listen to your clients with chronic pain, Turk advises. "One of the things that people with chronic pain tell us most often is that clinicians and case managers don't really listen to them. They just start focusing on what to do and the body parts and not the person," he says.
Listen to your patient's worries and concerns, Turk advises. Find out what patients are worried about, what areas of their lives are impacted by pain, and work with the patients to come up with solutions. Many people with chronic pain are concerned that it's going to get worse and they'll become disabled, bedridden, and totally dependent.
Find out what their symptoms are, what their greatest problems are, and what will represent an acceptable improvement to them. For instance, if a patient indicates on a scale of one to 10 that his pain is an eight, find out what level he is willing to tolerate.
Managing, not curing, pain
For many people, additional medical treatment won't eliminate the pain, Cowan points out. That's why people with pain need to understand that a chronic pain program is not about a complete cure. It's about learning to manage the pain and learning to live with it, she adds.
"People with pain often look to medication to give them that quick fix. They have unrealistic expectations. Those issues have to be addressed first. They have to understand that their pain is not an acute condition," she says.
Cowan likens treating chronic pain to fixing a car with four flat tires. "If you give a person with pain appropriate medication, it's like putting air in one of their tires. Health care providers and the person with pain need to work as a team to identify how to fill those other three tires," she says.
Many of the treatments for chronic pain have side effects, particularly the more invasive treatments, such as surgery, Turk points out. "Any surgery can lead to a different set of problems. Many medications have side effects as well," he says.
Encourage your patients to start with exercise and put off the more aggressive types of treatment unless there is a good medical reason, such as a tumor or a fracture.
"People have to accept the fact that they have a chronic condition that won't be cured. There are a lot of options for improving the symptoms but they need to understand that one more surgery or one more nerve block will not eliminate all pain," he says.
People with pain need to understand the responsibility of the medical community and their own responsibility in controlling their pain, Cowan says.
"It takes a team, not just a pill," she says. Solutions may include physical therapy, counseling, occupational counseling, stress management, or a variety of techniques, she says.
Help people with chronic pain break down their goals into manageable steps so people don't set themselves up to fail, Cowan says. For instance, stretching is helpful for people with chronic pain but if someone gets a workbook with 18 sketches and tries to do 10 repetitions of each exercise, they're going to hurt the next day.
"We recommend that the first day, they do one leg lift and work up gradually. The whole point is to take it gradually," she says.
People with chronic pain tend to focus on what they can't do any more. Case managers can help them focus on what they can do, Cowan says. Encourage people with pain to understand that they can do things but they have to do it within their own limits.
"Pain is never consistent. On good days, people with pain may overdo it and wear themselves out completely, which increases their level of pain. Then they may stay sedentary on their good days," she adds.
Recognize the emotional aspect of people with chronic pain but be cautious about immediately referring them for counseling, Cowan suggests.
"Many people with pain hear that they have to live with the pain and they become depressed but they're not clinically depressed.
"Case managers shouldn't start by referring them for counseling because they will become defensive and feel like they have to defend their pain," she adds.
"I get calls all the time from people with pain who say that their health care providers think it's all in their head. If they have to defend their pain, it will reduce the effectiveness of any treatment," she adds.
Case managers should direct their patients to resources that can help them manage pain day by day. "Health care providers can't do that. People with pain need information on support groups, workbooks, and other resources to help them," Cowan says.
Help patients communicate with doctors
Help your patients prepare for doctor visits. "Most people don't know how to communicate with their doctors. Case management coaching on the types of questions to ask and how to ask them will be a big help," she says.
She suggests the pain log tool on her organization's web site, a two-page instrument that patients can use to measure pain, stress, activity level, exercise, mood, sleep, and appetite: http://www.theacpa.org/documents/8%205x11%20Pain%20Log%202-8-06.pdf.
The doctor can immediately get a total picture of the patient and can compare the patient's results on previous tools.
Be aware that family members and significant others can be helpful but can also undermine the patient's progress, Turk says. Find out about the patient's support system. Know what support is available and how family and friends are helping or hindering the patient's progress.
Turk tells of a patient whose wife was so afraid he was going to overdo it, that she interfered with his exercise regimen. "She literally prevented the patient from engaging in the activities we had worked to develop. People can be non-supportive, even when they intend to be helpful. Patients with chronic pain do have limits and may need assistance but they also need independence," he says.
Health care providers can work with families to help them be supportive but at the same time, help them understand that giving patients too much help can prevent them from making progress, he adds.