Pain, Pain, Go Away ...
New standards should reduce suffering for those with chronic pain
By Irene S. Levine, Ph.D.
usan Wolf has suffered from rheumatoid arthritis for more than 20 years. Because of chronic pain, Wolf could no longer take care of her home and family. She lost her livelihood when she was forced to quit her advertising job due to her medical condition.
"The pain and my condition took over my whole life. I experienced pain deep down in my joints, from my neck to my feet. It is very hard to live with," Wolf testified at last July's Leadership Summit on Pain Management. The summit was convened by the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO), a nonprofit organization that sets standards and accredits the majority of health care facilities in the United States.
Wolf was initially told by her health care providers to take aspirin. When she still complained of unbearable pain, her rheumatologist reluctantly agreed to give her pain medication. But he prescribed only enough medication for her to take one pill every few days. When Wolf asked for more medication, her doctor called her an addict.
After ten operations and as many years of unrelenting pain, Wolf finally felt like she had hit rock bottom. "I thought of taking my own life," she recalls.
Wolf's life turned around when she found a pain specialist -- a physician trained in the management of chronic pain. The new doctor recognized that Wolf's pain wasn't being adequately treated and that her risk for addiction to opioids was actually quite low.
Now that her pain is under control, Wolf has resumed her active life; she swims and travels with her family. "I have found life again, and I'm so grateful," says Wolf.
Barriers to pain management
While pain is one of the most feared symptoms of any illness, our health care system has too often been complacent about dealing with it. Patients themselves may be reluctant to admit they experience pain; older people in particular may erroneously believe that pain is a normal part of aging. Still other patients harbor misguided fears about addiction or simply believe there is no relief available.
And even when pain is reported and assessed, it may not be monitored or managed correctly for a variety of reasons. As with some patients, many health care workers, including physicians, believe that the treatment of pain leads to addiction. Such fears appear to be groundless; on the contrary, mounting evidence suggests that people who really need pain medications rarely abuse them. However, misconceptions among medical professionals are not surprising given the scant attention most medical and nursing schools give to pain management.
Some physicians fear that they will be subject to regulatory action for the overprescription of opioids. Still others are hesitant to use effective medications for intractable pain, like morphine, because they are fearful it will lead to respiratory failure or death. Poor reimbursement policies are a further disincentive for physicians thinking of undertaking the complex and time-consuming task of addressing and treating pain.
Perry Fine, M.D., professor of anesthesiology at the University of Utah School of Medicine acknowledges that medical culture, in terms of education and clinical practice, too often tolerates pain because its treatment is seen as a hassle by clinicians focused on other specialties.
"Pain control is not respected in the medical community," comments Dr. Fine.
The "terrible triad" of untreated pain
It is estimated that 50 million Americans, like Wolf, suffer needlessly from chronic pain that is so exhausting it takes over their life . They can't work, their appetite falls off, and they can't sleep at night. Specialists have coined a term for this state: "The terrible triad" refers to the suffering, sleeplessness, and sadness created and perpetuated by untreated, chronic pain.
Most patients don't realize that they need not suffer from pain. The new standards highlight pain management as a patient right and underscore the importance of educating patients, and not just health care providers, about controlling pain.
Chronic pain can be associated with a number of medical conditions including headache, lower-back injuries, cancer, arthritis, and nerve damage. Some people experience chronic pain that is termed psychogenic, meaning it is real pain with no discernible physical origin.
Many others suffer acutely from postoperative pain (that which follows surgery) or from pain that results from traumatic injury or disease. It is estimated that out of the 23 million surgical operations performed in the United States each year, only one in four patients experience adequate pain relief.
Untreated pain is, unfortunately, a major public health concern in the United States. While many effective treatments are available, many more suffer needlessly. For example, it is estimated that as many as 80 percent of nursing home residents suffer from substantial pain that is undertreated.
The new JCAHO standards
The failure of the medical community to systematically treat and assess pain as a routine part of medical care is the main reason for the that pain is undertreated. Thanks to the JCAHO's new pain assessment and management standards implemented this year in many hospitals and other health care facilities, patients will be adequately treated for pain at the nearly 18,000 health care facilities accredited by the organization. All patients receiving care from JCAHO-accredited hospitals, nursing homes, home-care agencies, outpatient clinics, behavioral health facilities, and health care networks will now have the right to request appropriate assessment and management of their pain.
The new standards were developed over the course of two years with support from the Robert Wood Johnson Foundation and with input from professional and consumer groups. The standards make pain management an essential element of treatment by requiring the following:
- Initial assessment and regular reassessment of pain
- Education of relevant providers in pain assessment and management
- Education of patients, and families when appropriate, regarding their roles in managing pain and the potential limitations and side effects of pain treatments
- Communication to patients and families about the fact that pain management is an important part of care (taking into account personal, cultural, spiritual, and/or ethnic beliefs)
Pain management is a patient's right
The newly introduced standards signal a dramatic shift in the way Americans think about pain. In essence, the standards hold health care organizations accountable for recognizing and treating pain. The standards make explicit the view that while pain may be a common denominator in that it's associated with many illnesses, it still merits special attention on its own. For example, if a woman is being treated for breast cancer, she needs to be effectively treated for both the cancer and any pain associated with it.
Most patients don't realize they need not suffer from pain. For this reason, the standards highlight pain management as a patient right. They also underscore the importance of educating patients, and not just health care providers, about controlling pain.
Under the new regulations, a facility is required to identify which patients have pain and when warranted, measure pain quantitatively using a ten-point scale. The scale is based on the character of the pain (e.g., sharp or dull) and its frequency, location, and duration. That information is then recorded, and regular reassessment and follow up is done.
The standards apply to all patient populations, including children. Compliance with these rules is assessed by surveyors who review patient records, procedures, and policies and who interview selected families and clinical staff as part of the accreditation procedure for each facility.
What you can do about pain
With the publication of the new standards, Dr. Fine and others believe we will finally witness attitudinal changes about pain management in the health care community.
But it is equally important that consumers recognize their rights. Patients need to know about the existence of the JCAHO's pain standards, about their right to participate in any decisions regarding pain management, and about their right to be educated about pain and its treatment. Hospitals are beginning to post signs and hand out flyers to help spread the word.
There are several steps you can follow to take charge of your health care and manage your pain:
- Feel free to discuss pain with your physician. Be honest and open.
- Keep a pain diary. Record the times of day when you feel pain. Is it associated with exercise? Before or after meals? When is it better? When is it worse?
- Provide sufficient information to describe your pain. Is it throbbing, sharp, dull? Tingling, shooting, or burning?
- Use pain rating scales. Rate your pain from 1 to 10. Rank that pain from day to day or from episode to episode.
- Discuss medications you are presently taking with your doctor. Do you use over-the-counter pain relievers like aspirin, acetaminophen, and nonsteroidal anti-inflammatory drugs, such as ibuprofen? Advise the doctor about previous treatments for your pain and the outcomes.
- Discuss various options for pain relief with your physician. Be cautious about using food supplements with purported natural pain-relieving properties. The Food and Drug Administration does not regulate these products for safety or efficacy. Be open to non-drug treatments such as yoga, meditation, biofeedback, and hypnosis.
- Feel comfortable telling your doctor whether the pain management plan you have agreed upon is working.
The fifth vital sign
While not all pain and suffering can be relieved, a lot can be done. The JCAHO standards herald a new awareness that pain is a "fifth vital sign" and should be measured with the same vigilance as blood pressure, pulse, temperature, and respiratory rate.
"Appropriate pain management is good medicine," comments Dennis O'Leary, M.D., president of the JCAHO. "It results in quicker clinical recovery, shorter hospital stays, fewer readmissions, and improved quality of life."
If you feel that your pain -- or that of a family member or friend -- is not being taken seriously, you may want to get a second opinion or seek out a physician who is trained in the medical and psychological aspects of pain management.
And if you feel that your treatment at an accredited health care organization is not meeting the new standards, you can call the JCAHO's toll-free hotline (800-994-6610) to report your concerns regarding quality of care.
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