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The newly approved Joint Commission on Accreditation of Healthcare Organization (JCAHO) pain assessment and management standards present a rare and important opportunity for widespread and sustainable improvement in how pain is managed in the United States. Nurses, especially those with expertise in pain management, can be valuable assets in assisting with improvements in an organization's pain assessment and management processes. This article provides a review of the incidence and “costs” of uncontrolled pain and the many reasons for its undertreatment, and an explanation of the JCAHO standards development process. In addition, implications for pain management nurses are discussed, including suggesting a process for building an institutional commitment to pain management in any health care organization.
The incidence of unrelieved pain
Unrelieved pain is a major, yet avoidable, public health problem (Carr, Jacox, Chapman, Ferrell, Fields, Heidrich, Hester, Hill, Lipman, McGarvey, Miaskowski, Mulder, Payne, Schlecter, Shapiro, Smith, Tsou, & Vecchiarelli, 1992; Cleeland, Gonin, Hatfield, Edmondson, Blum, Stewart, & Pandya, 1994; Jacox, Carr, Payne, Berde, Breitbart, Cain, Chapman, Cleeland, Ferrell, Finley, Hester, Hill, Leak, Lipman, Logan, McCarvey, Mulder, Paice, Shapior, Siberstein, Smith, Stover, Tsou, Vecchiarelli, & Weissman, 1994). Pain is the most common reason people seek medical attention. Ironically, it continues to be undertreated despite the availability of effective drugs and other therapies. Several studies document the incidence of uncontrolled pain. Data from the Robert Wood Johnson-funded SUPPORT study showed a high incidence of uncontrolled pain (from 74% to 95%) in very ill and dying hospitalized adults despite planned interventions from nurses to encourage physicians to attend to pain control (SUPPORT Study Principle Investigators, 1995). Others have shown similar frequencies of uncontrolled pain. Marks and Sachar (1973) first alerted health care professionals to the undertreatment of pain. They found a large discrepancy between the amount of analgesic ordered and the amount actually administered to surgical patients, which resulted in significant unrelieved pain. Other research documents a high incidence of uncontrolled and severe pain in hospitals (Donovan, Dillon, & McGuire, 1987; Oden, 1989; Sriwantanakul, Weis, Alloza, Kelvic, Weintraub, & Lasagna, 1983). Upward of 70% to 80% of people in long-term care facilities are estimated to have pain, with 75% reporting pain that interferes with day-to-day functioning. Their pain is also often undertreated or totally ignored in their treatment plans (Ferrell, Ferrell, & Osterweil, 1990; Roy & Thomas, 1986; Sengstaken & King, 1993; Bernabei, Gambassi, & Lapane, 1998). Similarly, 50% to 80% of patients with cancer do not receive adequate pain control, and many experience severe pain that impacts their ability to perform the basic activities of daily life (Bonica, 1985; Jacox et al, 1994). High levels of unrelieved pain also have been documented in other health care settings, including burn units (Atchison, Osgood, Carr, & Szyfelbein, 1991), outpatient clinics (Jacox et al, 1994; Foley, 1995), emergency departments (Todd, Samaroo, & Hoffman, 1993), and pediatric units (Schlecter, 1989). Although there are no studies documenting the incidence of unrelieved pain in home care settings, it is reasonable to assume it is similar to that in other settings (K.M. Stevenson, personal communication, March 1999). Surprisingly, there is no research on the adequacy of pain management in hospice patients despite the fact that hospice is considered a leader in end-of-life pain and symptom treatment.
The “cost” of unrelieved pain
Unrelieved pain has adverse physiological and psychological effects. Physiological consequences include impaired gastrointestinal and pulmonary function (Cousins, 1994; Sydow, 1988; Wattine, 1988); nausea and dyspnea (Desbiens, Mueller-Rizner, Connors, & Wenger, 1997); increased metabolic rate, including, in the case of cancer, increased tumor growth and metastasis (Sklar & Anisman, 1979; Visintainer, Volpocelli, & Seligman, 1982); impaired immune response (Keller, Weiss, Schliefer, Miller, & Stein, 1981); insomnia, delayed healing, increased blood clotting, loss of appetite, and inability to walk or move about (Bendebba, Torgerson, & Long, 1997; Laudebslager, Ryan, Drugan, Hyson, & Maier, 1983; Liebeskind, 1991; Liu, Carpenter, & Neal, 1995; McCaffrey & Pasero, 1999; Page, 1996). Indeed, impairment of upper extremity joint function, because of pain, is a risk factor for functional decline and increased dependency in older adults (Hughs, Gibbs, Dunlop, Edelman, Singer, & Chang, 1997). Psychological consequences of unrelieved pain include anxiety and depression (Casten, Parmalee, Kleban, Lawton, & Katz, 1995; Heim & Oci, 1993), loss of enjoyment of life, inability to relate to others, feelings of hopelessness and helplessness, and even requests for physician-assisted suicide (Bendebba et al, 1997; Foley, 1991; Liu et al, 1995; McCaffrey & Pasero, 1999).
There is increasing and compelling evidence that unrelieved acute pain is directly linked to subsequent long-term pain problems, which further supports the importance of and need for aggressive control of acute pain (Dworkin, 1997; Katz, 1995). In one study, the level of acute pain in elderly hospitalized adults was strongly associated with later pain (Desbiens, Mueller-Rizner, Connors, Hamel, & Wenger, 1997). In addition, poor management of postthoracotomy pain was associated with long-term, chronic pain (Dworkin, 1997; Katz, Jackson, Kavanaugh, & Sandler, 1996). Severe and uncontrolled acute pain is a risk factor for phantom limb pain, postherpetic neuralgia, and chronic back pain (Linton, 1997). In a study that examined risk factors for the development of chronic pain in women after mastectomy for breast cancer, the strongest predictor was the intensity of acute postoperative pain (Tasmuth, von Smitten, & Kalso, 1995). Management of pain after a radical prostatectomy with epidural analgesia decreased preoperative pain during hospitalization and long after discharge, and was associated with increased activity levels after discharge (Carr, 1998; Gottschalk, Smith, Jobes, Kennedy, Lally, Noble, Grugan, Seifert, Cheung, Malkowicz, Gutsche, & Wein, 1998). Although these findings call attention to the importance of pain management during illness and in the postoperative period, they also suggest that appropriate and aggressive “up front” pain management would decrease the likelihood of future chronic pain problems with attendant disability (Carr, 1998).
Pain also impacts markedly on family coping and functioning, including increasing social isolation and marital conflict, reducing sexual activity, and causing feelings of anger, anxiety, resentment, and despondency among family members (Snelling, 1994). Differing perceptions about pain and its management among patients and family members also can interfere with optimal pain management (Taylor, Ferrell, Grant, & Cheyney, 1993; Ferrell, Ferrell, Rhiner, & Grant, 1991). With health care increasingly administered on an outpatient basis, the knowledge and support of family and others are essential ingredients to optimal pain management.
Inadequate management of pain and other symptoms not only decreases the quality of life; it also creates a financial burden on the health care system and on our society. Unrelieved pain costs millions of dollars annually as a result of longer hospital stays, rehospitalizations, and visits to outpatient clinics and emergency rooms (Grant, Ferrell, Rivera, & Lee, 1995; Sheehan, McKay, Ryan, Walsh, & O'Keffe, 1996). Furthermore, patients who are unable to work because of pain increase the cost of disability programs. Persons with uncontrolled pain may not only lose income but also access to insurance coverage (Latham & Davis, 1994).
There is evidence that adequate pain management will indeed save precious health care dollars and resources. In addition to preventing the development of chronic pain problems in some patients and reducing the number of readmissions for uncontrolled pain, hospital stays can be shortened and pain can be successfully managed at home (Ferrell, 1993; Ferrell & Griffith, 1994).
Health care provider liability for undertreatment and mismanagement of pain may emerge as an important future issue (Shapiro, 1996). A family of a nursing home resident was awarded 15 million dollars in early 1991 because the nursing staff, despite appropriate physician orders, refused to provide adequate pain management, largely owing to a lack of knowledge about pain treatment and erroneous perceptions regarding addiction (Pain Control: A Case of Negligence, 1991; Cushing, 1992). The Georgia Supreme Court affirmed a patient's right to refuse medical treatment as well as the right to be provided adequate comfort care, including pain management (State v. McAfee, 1989).
Why is pain undertreated?
Multiple studies show that many health care professionals lack the knowledge and skills to manage pain effectively (Brunier, Carson, & Harrison, 1995; Drayer, Henderson, Reidenberg, 1999; Ferrell, McGuire, & Donovan, 1993; Gibbs, 1995; Levin, Berry, & Leiter, 1997; McCaffrey & Thorpe, 1989). Health care professionals also have inaccurate and exaggerated concerns about addiction, tolerance, respiratory depression, and other opioid side effects, which lead them to be extremely cautious about the use of these drugs (Brunier et al., 1995; McCaffrey, Ferrell, O'Neil-Page, Lester, & Ferrell, 1993; Von Roenn, Cleeland, Gonin, Hatfield, & Pandya, 1993; Vortherms, Ryan, & Ward, 1992). Education, although important, has been insufficient to effect practice change (Max, 1990; Greco & Eisenberg, 1993).
Patients and the general public share these concerns about opioids. Americans would rather bear pain than take actions to relieve it, fearing addiction, side effects of medications, and “dependence” on drugs. Likewise, many persons fear tolerance and believe “strong” medications should be saved until they are really needed (Bostrom, 1997). Many people believe pain is a necessary part of life (Fins, 1997). Patients may be reluctant to challenge a health care provider who says, “There is nothing I can do about your pain,” because they view pain as an inevitable part of life. Finally, many people believe “good” patients do not complain (Levin, Cleeland, & Dar, 1985; Ward, Goldberg, Miller-McCauley, Mueller, Nolan, Pawlik-Plank, Robbins, & Stormoen, 1993).
Although health care professionals as well as patients may create formidable impediments, traditional patterns of professional practice may be the most intractable barriers to effective pain management. The failure of staff to routinely assess and document pain, the lack of access to practical treatment protocols, and the common view that pain is an expected and insignificant symptom continue to impede progress. Health care organizations and institutions must address these barriers in their practice settings to ensure that all patients receive quality pain management. The resulting improvements in functional status and quality of life can prevent needless suffering and reduce the financial burden that unrelieved pain imposes on the health care system and society as a whole. An Ishikawa (fishbone) diagram (see Figure 1) provides a visual summary of the barriers to adequate pain management.
Although at first glance improving pain management may require increased staff and time, we have found otherwise from interacting with organizations successful in this field. For example, St. Clare Hospital and Health Services, in Baraboo, Wisconsin, with an average census of 40 patients, initiated a pain management improvement program in the early 1990s as part of their organization's performance improvement activities. Through interdisciplinary efforts, they have documented improvements in the frequency and quality of pain assessment on admission and throughout the hospital stay; the reduction of the use of meperidine and the use of the intramuscular route for pain; and increased use of patient-controlled analgesia, intrathecal administration of medications for women in labor, and dorsal blocks for circumcisions (P. Felland, personal communication, September 1999). Other organizations report minimal financial outlay to effect organization-wide change (J. Loeb, personal communication, 1999; P. Tanabe, personal communication, October 1999). More research is ongoing—and desperately needed—to further show the cost effectiveness of quality pain assessment and management.
The JCAHO standards development process
Undertreatment of pain persists despite nearly 3 decades of efforts to educate health care clinicians, patients, and the public about pain and its treatment. The tools to relieve most, if not all, pain have been available for many years. During the past 20 years, many educators, clinicians, and professional organizations have dedicated themselves to improving the management of pain (American Pain Society Quality of Care Committee, 1995; Fox, 1997). As the investigators in the SUPPORT study concluded, “more proactive and forceful measures may be needed” to improve care of seriously ill and dying patients (SUPPORT Study Principle Investigators, 1995). A change in the JCAHO standards and other enforceable guidelines to include pain assessment and treatment would indeed be the measure needed.
In August 1997, the Robert Wood Johnson Foundation provided support for a 3-year project whose overall goal is to make pain assessment and treatment an integral part of the nation's health care system. An important part of this project was to integrate pain assessment and management into the standards that JCAHO uses to accredit health care facilities. The other three project initiatives are summarized in Table 1.
Implementation of a national quality improvement program focused on acute postoperative pain management.
Development and implementation of pain quality improvement programs with home health agencies in Wisconsin. After completion of the Wisconsin programs, the programs will be for national dissemination.
A set of eight videotapes, directed primarily to home health nurses, each 10 to 15 minutes in length, focusing on pain assessment and management skills. Copies of these tapes will be given to the agencies participating in the home health care project and sold at cost to others.
The project presented a unique and rare opportunity to effect sustainable systemwide change in pain management practices in all care settings. At the same time, we entered into a collaborative project with the JCAHO Department of Standards to integrate pain assessment and management for all patients into their standards, intent statements, examples of implementation, and survey process questions.
Collaborating with the JCAHO seemed an efficient and logical way to impact on pain assessment and management practices in the U.S. health care system. The Joint Commission's mission is to improve the quality of care provided to the public by offering health care accreditation and related services that support performance improvement in health care organizations. According to JCAHO documents,the Joint Commission has comprehensive quality review programs for hospitals, health plans, home care agencies, laboratories, behavioral health care settings, long term care facilities, ambulatory care clinics, and networks of services that can, and often do, serve as an alternative to state and federal inspection of these organizations. In fact, the Joint Commission's Hospital, Home Care, and Laboratory Accreditation Programs are recognized by the federal Health Care Financing Administration (HCFA) as meeting or exceeding the federal quality standards for these organizations. Thus many of these organizations are able to use their Joint Commission accreditation to obtain Medicare certification through a process known as ‘deemed status’. Similar reliance for licensure purposes exists for hospitals and other types of provider organizations in most states (Joint Commission on Accreditation of Healthcare Organizations, 1999).
After over 2 years of working with the Department of Standards staff in justifying the need, reviewing and summarizing the relevant literature, preparing draft standards language, intent statements, and examples of implementation, and assisting in the presentations to the various advisory and decision making committees, the revisions received approval of the JCAHO Board of Commissioners in May 1999. The standards are published in the 2000-2001 manuals for ambulatory care, behavioral health, health care networks, home care, hospitals, long-term care, and long-term care pharmacies and will most likely be scored for compliance beginning with the 2001 health care organization surveys.
The new standards require all organizations to:
Recognize the right of patients to appropriate assessment and management of their pain;
Identify patients with pain in an initial screening assessment;
Perform a more comprehensive pain assessment when pain is identified;
Record the results of the assessment in a way that facilitates regular reassessment and follow-up;
Educate relevant providers in pain assessment and management;
Determine and assure staff competency in pain assessment and management;
Address pain assessment and management in the orientation of all new staff;
Establish policies and procedures that support appropriate prescription or ordering of effective pain medications;
Ensure that pain does not interfere with participation in rehabilitation;
Educate patients and their families about the importance of effective pain management;
Address patient needs for symptom management in the discharge planning process; and
Collect data to monitor the appropriateness and effectiveness of pain management.
An example of the standards, intent statements, and examples of implementation are found in Table 2.
Table 21999-2000 Comprehensive Accreditation Manual for Hospitals (CAMH) Assessment of Patients Chapter
Standard PE.1.4 Pain is assessed in all patients.
Examples of Implementation for PE.1.4
All patients at admission are asked the following screening or general questions about the presence of pain: Do you have pain now? Have you had pain in the last several weeks or months? If the patient responds “yes” to either question, additional assessment data are obtained about the following elements:
Pain intensity (use a pain intensity rating scale appropriate for the patient population; pain intensity is obtained for pain now, at worst, and at best or least; if at all possible, the pain rating scale is consistently used in the organization and between disciplines);
Location (ask the patient to mark on a diagram or point to the site of pain);
Quality, patterns of radiation, if any, character (elicit and record the patient's own words whenever possible);
Onset, duration, variation, and patterns;
Alleviating and aggravating factors;
Present pain management regimen and effectiveness;
Pain management history (including a medication history, presence of common barriers to reporting pain and using analgesics, past interventions and response, manner of expressing pain);
Effects of pain (impact on daily life, function, sleep, appetite, relationships with others, emotions, concentration, and so forth);
The patient's pain goal (including pain intensity and goals related to function, activities, quality of life); and
Physical examination observation of the painful site.
Patients often have more than one site of pain. An assessment system or tools with space to record data on each site is provided on the assessment sheet.
A hospital may need to use more than one pain intensity measure. For example, a hospital serving both children and adults selects a scale to be used with each of those patient populations. Assessment of cognitively impaired patients may also require assessment of behavioral factors signaling pain or discomfort.
Staff are educated about pain assessment and treatment including the barriers to reporting pain and using analgesics. Staff encourage the reporting of pain when a patient and/or family member shows reluctance to discuss pain, denies pain when pain is likely to be present (e.g., postoperative, trauma, burns, cardiac emergencies), or does not follow through with recommended treatments.
Pain intensity scales are enlarged and displayed in all areas where assessments are conducted. For organizations using clinical pathways, pain assessment is incorporated in some way into every appropriate clinical pathway.
An organization selects pain intensity measures to ensure consistency across departments, for example, the 0-10 scale, the Wong-Baker FACES pain rating scale (smile-frown), and the verbal descriptor scale. Adult patients are encouraged to use the 0-10 scale. If they cannot understand or are unwilling to use it, the smile-frown or the verbal scale is used.
A unit caring for persons with Alzheimer's disease developed a pain scale for each resident based on the long-standing knowledge of their residents and their knowledge of common pain syndromes in elderly people.
A pediatric hospital includes in its orientation materials for parents information about pain and pain assessment, including the parent's role in interpreting behavioral changes of the child that may indicate pain or discomfort.
All of the new standards are posted on the Joint Commission's Web site at http://www.jcaho.org, by selecting “pain assessment and management” under the “top spots” drop-down menu. Questions about the new standards can be directed to JCAHO's Standards Interpretation Unit at (630)792-5900 (E-mail [email protected]).
We are now collaborating with the Department of Education Programs and the Department of Publications to educate surveyors, accredited health care organizations, and health care professionals from all disciplines about pain and the new pain standards. In addition, these educational programs and materials also describe how to “institutionalize” pain assessment and management practices into an organization's daily care processes. Institutionalizing pain assessment and management into the “fabric” of an organization is especially important because this is the intent of the new standards. Finally, we will complete an evaluation of the impact of the standards revisions and summarize our project, a process we estimate will take until August 2001.
Implications for pain management nurses
Nurses, especially those with expertise in pain management, are often called on to become the “champions” or lead the pain management improvement efforts in an organization. Knowledge of pain management, along with knowledge of the organization, excellent oral and written communication skills, good interpersonal skills, patience and persistence, flexibility, and a commitment to promoting pain management as part of a generalist practice rather than solely as a specialist skill are critical attributes (Gordon, Dahl, & Stevenson, 1996). Consider offering your expertise to your organization as they consider the new pain standards and the organizational changes necessary to meet them.
Building an institutional commitment to pain management
Education alone does not change practice. Indeed, traditional patterns of professional practice may be the most intractable barriers to effective pain management, including the failure of staff to routinely assess and document pain, the lack of access to practical treatment protocols, and the common view that pain is an expected and insignificant symptom. Health care organizations and institutions must address these barriers in their practice settings to ensure that all patients receive quality pain management. One way to approach these barriers is to “institutionalize” pain management practices defined as incorporating basic principles of pain assessment and treatment into patterns of daily practice including documentation systems, policies and procedures, standards of practice, orientation and continuing education programs, and quality improvement programs; or, in other words, weaving standards of pain management into the “fabric” of the organization.
Although the process of institutionalizing pain management may vary from one setting to another, the basic steps to ensure high quality, sustainable, and cost-effective improvements in pain management for all patients, clients, and/or residents are the same. Also keep in mind that changing institutional practices is a continuous, and often slow and laborious process. Successful efforts, however, that produce interdisciplinary collaboration, long-lasting change, and most importantly, improvements in the quality of pain management, are well worth the effort!
The following eight steps to institutionalizing pain management are listed below (Gordon et al., 1996). They are patterned after the work of the American Pain Society Quality of Care Committee (1995) Quality improvement guidelines for the treatment of acute pain and cancer pain. Both served as a guide for the development of the new JCAHO pain assessment and management standards.
Develop an interdisciplinary work group. An interdisciplinary approach—and “buy-in”—is essential to change an organization's practice patterns. Invite members from all disciplines that have pain management in their practice responsibilities, including nursing, medicine, pharmacy, as well as representatives from administration. Invite those people who may be the most resistant to change. Consider also including patient and family representation whenever possible.
Analyze current pain management practices in your care setting. An individualized organizational analysis is essential to assure buy-in from all involved and clearly differentiate between actual organizational needs and individual interests. In addition, having data relevant to only the organization brings the issue and the “problem” close to home. Data related to the cost of unrelieved pain to the organization is especially powerful. Use Continuous Quality Improvement (CQI) principles, including root cause analysis, to gather data to understand the process and discover opportunities for improvement. Gather data with the goal of using it in the future for comparison.
Articulate and implement a standard of practice. The goal is to make pain “visible” in the organization. Establish a standard for the assessment of pain, including guidelines to assist clinicians in making decisions about how follow-up is performed. In addition, determine the method of assessment in which pain assessment is documented, and how and when it is communicated among health care professionals and care settings. Finally, develop specific policies/resources to guide the use of specialized techniques for drug administration (e.g., the spinal and parenteral routes).
Establish accountability for quality pain management. Keep in mind that lack of accountability for pain management is one of the major barriers to quality pain management. Competency assessments regarding pain assessment and management and inclusion in performance evaluations, practice standards, position descriptions, and policies and procedures assigns accountability and ensures that pain assessment and management is not just a “specialty” service, but rather everyone's responsibility who cares for patients in the organization.
Provide information about pharmacological and nonpharmacological interventions to clinicians to facilitate order writing, interpretation, and implementation of orders. There are multiple resources available for clinicians—including the Agency for Healthcare Research and Quality and Research Clinical Practice Guidelines for acute and cancer pain, the American Pain Society Sickle Cell Guidelines, and countless algorithms, protocols, pocket guides, and clinical pathways. Provide information and education relevant to the bedside caregiver—where clinicians need, and use it, the most.
Promise patients a quick response to their reports of pain. As discussed earlier, patients and families have low expectations regarding pain and pain relief. Including a commitment to pain management in an organization mission statement and the patient bill of rights sends a strong message about the promise of adequate pain management. In addition, educating patients and families about why pain management is an important part of their care, that their reporting pain is essential to good pain management, how to use a pain rating scale, and what are realistic and desirable pain relief goals with attention to cultural and language variables is also necessary.
Provide education for staff. Although education alone does not change practice, it is still an essential part of institutional change. Including pain assessment and management in orientation and continuing education programs, case presentations, pain rounds, and developing pain resource nurses are some ways to provide education for staff. Education requires careful planning, including the use and incorporation of the principles of adult education, and should also support the institutional change process.
Continually evaluate and work to improve the quality of pain management. No improvement effort or change is complete without an evaluation that then feeds back into the organization's CQI process. There are multiple ways to accomplish this—through use of the American Pain Society Patient Survey (American Pain Society Quality of Care Committee, 1995), medical record review, review of costs associated with pain management, and readmissions for uncontrolled pain, and drug use reviews.
The costs of uncontrolled pain are momentous—in human, economic, and psychosocial terms. Everyone, regardless of diagnosis, should expect and receive appropriate pain management. The new JCAHO standards are an important first step in making this, until now, unrealistic dream a reality.
The authors acknowledge the valuable contributions of Debra B. Gordon, MS, RN, and the JCAHO Department Standards staff.
American Pain Society Quality of Care Committee
Quality improvement guidelines for the treatment of acute pain and cancer pain.
Journal of the American Medical Association.1995; 23: 1874-1880