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Special Report


How to Help Families Better Assess Patients' Pain

by Norman A. Desbiens, M.D.

Geriatric Times May/June 2001 Vol. II Issue 3

Research conducted over the last 20 years has been remarkably consistent in demonstrating that pain is a major problem for patients of all ages in all health care venues (Abbott et al., 1992; Desbiens et al., 1996; Donovan et al., 1987; Kroenke et al., 1990). Pain is particularly troubling for the elderly in hospitals and nursing homes, where it has been widely ignored (Desbiens et al., 1997; Won et al., 1999). Most Americans die in hospitals and nursing homes; and although control of pain and suffering is a traditional goal of all health care (Cassel, 1982), pain is unnecessarily troubling for these patients, even in their final death throes (Baker et al., 2000).

Most authorities believe that by using medications that are readily available, the American health care system has the means at hand to decrease the pain and suffering of patients in hospitals and nursing homes. What has been lacking is sensitivity to the issue and determination to solve it. The failure of our health care system to address pain and suffering seriously is a major ethical issue for our times (Desbiens and Wu, 2000). The public and the legal profession are quickly becoming aware of the failure of medicine to pay adequate attention to its traditional nemeses -- pain and suffering.

Now accreditation agencies have joined the battle against pain and are providing strong motivation for health care institutions to do so as well. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) now requires hospitals and long-term care facilities to demonstrate comprehensive pain education, monitoring and treatment programs (JCAHO, 2001b). No segment of these institutions will be exempt from these requirements. JCAHO is requiring facilities to conceptualize pain as a separate coexisting condition that demands attention separate from the medical condition or conditions that might be causing the pain. In other words, attention to medical problems is not enough; pain must be addressed separately and comprehensively.

Standard RI.1.2.8 of the JCAHO handbook (JCAHO, 2001a) states: "Patients have the right to appropriate assessment and management of pain." It goes on to explain its intent:

Pain can be a common part of the patient experience; unrelieved pain has adverse physical and psychological effects. The patient's right to pain management is respected and supported. The organization plans, supports, and coordinates activities and resources to assure the pain of all individuals is recognized and addressed appropriately. This includes 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 as well as the potential limitations and side effects of pain treatments; and after considering personal, cultural, spiritual and/or ethnic beliefs, communicating to patients and families that pain management is an important part of care.

JCAHO recognizes the pivotal role of families in pain control.



Pain is always subjective. The International Association for the Study of Pain (1994) emphasized: Many people report pain in the absence of tissue damage or any likely pathophysiological cause; usually this happens for psychological reasons. There is usually no way to distinguish their experience from that due to tissue damage if we take the subjective report. If they regard their experience as pain and if they report it in the same ways as pain caused by tissue damage, it should be accepted as pain.

Nonetheless, subjective estimation presents particular challenges for a geriatric population that has a high prevalence of aphasia or dementing illnesses, which may inhibit patients' ability to communicate or quantify pain using verbal, numerical or visual analogue scales. In these situations, family members may be the best sources of information about patients' pain. In other situations, even for patients who are cognitively and communicatively intact, family caregivers may feel that they can better estimate patients' pain than patients themselves. These occurrences can present particular challenges for health care providers who will then appreciate the value of standardized scales.

How good are family members at estimating patients' pain? Few studies have addressed this matter. However, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a study of patient and family experience with serious illness conducted in five major teaching hospitals in the last decade, gave insight into the ability of family members to assess the presence and level of patient pain by conducting similar interviews about pain with patients and families at similar times during hospitalization (The SUPPORT Investigators, 1995).

This study showed that family members were quite accurate in estimating when patients had pain; family members reported that patients were in pain when patients reported pain (sensitivity) nearly 80% of the time and responded that patients were not in pain when patients denied pain (specificity) nearly 70% of the time (Desbiens and Mueller-Rizner, 2000). However, family members were only 50% accurate in estimating the exact level of pain, overestimating it one time in six and underestimating it one time in 10. Family members were more accurate in detecting higher levels of pain, in which case accuracy increased to nearly 90%. Family members' education, age, gender and time to travel from their home to the patients' homes were not associated with accuracy in assessing pain. Since these family members were surrogate decision-makers for the patients, we surmise that in estimating patients' pain, caring is more important than exact relationship.

What can health care institutions do to train family members to better assess patients' pain? The JCAHO requirements provide institutions with a timely opportunity to include families when educating patients about pain and its assessment. Patients, caregivers and family members may all have misconceptions about pain and its assessment and treatment. Every effort should be taken to include family members and caregivers in pain education sessions and to teach them to use standardized pain assessment scales. Family members can observe nursing staff as they assess patients' pain. In turn, nursing staff should observe family members as they measure patients' pain and record findings. Similar to hospital pain treatment protocols, family members could be instructed in analgesic use if a certain pain level is surpassed. These sessions could help family members calibrate standardized patient reports of pain with behaviors (such as restlessness, agitation or withdrawal) that might be associated with pain.

What about patients who are aphasic? Pain scales may still be useful in some of these patients, and institutions should have available a variety of word, numerical and faces scales to determine which are easier for patients to use. Patients who cannot communicate at all -- those with profound aphasia, advanced dementia or delirium -- present a particularly difficult challenge. In these cases, professional staff may have to rely solely on behavioral cues. A family member who has previously correlated behaviors with standardized pain assessments or who has correlated improvement in behavior with response to analgesics may be particularly valuable. Lacking this information, a therapeutic trial of an analgesic may be informative for both the caregiver and the health care professional.

How can institutions benefit from educating family members to better assess patients' pain? As previously mentioned, family members who can assess pain in a standardized fashion and correlate pain with behaviors can provide valuable information to the nursing staff at the time of admission. Knowing that family members and nursing staff are on the same team will enhance rapport and mutual respect. Improved assessment should lead to prompt treatment of pain, which, in addition to relieving human suffering, may decrease other complications of hospitalization and long-term care (Davis and Walsh, 2000).

Including caregivers in educational and treatment plans will go a long way to demonstrate to JCAHO that an institution is seriously interested in pain control. What better image for a hospital or nursing home to project than one of unrelenting effort to prevent needless pain and suffering? This image will be immediately apparent to extended family and friends and will ultimately redound to the benefit of caregivers and health care institutions.

Dr. Desbiens is professor and chair of medicine at the University of Tennessee College of Medicine-Chattanooga Unit and medical director of Alexian Brothers Community Services' Program of All-Inclusive Care for the Elderly.

References

Abbott FV, Gray-Donald K, Sewitch MJ et al. (1992), The prevalence of pain in hospitalized patients and resolution over six months. Pain 50(1):15-28.

Baker R, Wu AW, Teno JM et al. (2000), Family satisfaction with end-of-life care in seriously ill hospitalized adults. J Am Geriatr Soc 48(5 suppl):S61-S69.

Cassel EJ (1982), The nature of suffering and the goals of medicine. N Engl J Med 306(11):639-645.

Davis FN, Walsh C (2000), Pain management improves care and revenue: an interview with ProCare Systems. Healthc Financ Manage 54(1):34-37.

Desbiens NA, Mueller-Rizner N (2000), How well do surrogates assess the pain of seriously ill patients? Crit Care Med 28(5):1347-1352 [see comment].

Desbiens NA, Mueller-Rizner N, Connors AF Jr et al. (1997), Pain in the oldest-old during hospitalization and up to one year later. HELP Investigators. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc 45(10):1167-1172.

Desbiens NA, Wu AW (2000), Pain and suffering in seriously ill hospitalized patients. J Am Geriatr Soc 48(5 suppl):S183-S186.

Desbiens NA, Wu AW, Broste SK et al. (1996), Pain and satisfaction with pain control in seriously ill hospitalized adults: findings from the SUPPORT research investigations. For the SUPPORT investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Crit Care Med 24(12):1953-1961.

Donovan M, Dillon P, McGuire L (1987), Incidence and characteristics of pain in a sample of medical-surgical inpatients. Pain 30(1):69-78.

International Association for the Study of Pain (1994), IASP pain terminology. In: Classification of Chronic Pain, 2nd ed., Merskey H and Bogduk N eds. Seattle: IASP Press, pp209-214. Available at: www.halcyon.com/iasp/terms-p.html. Accessed March 4, 2001.

JCAHO (2001a), Comprehensive Accreditation Manual for Hospitals: The Official Handbook (CAMH). Oak Brook Terrace, Ill.: Joint Commission Resources.

JCAHO (2001b), Joint Commission Standards on Pain Management. Available at: www.jcaho.org/standard/ stsd2001_mpfrm.html. Accessed April 20.

Kroenke K, Arrington ME, Mangelsdorff AD (1990), The prevalence of symptoms in medical outpatients and the adequacy of therapy. Arch Intern Med 150(8):1685-1689 [see comments].

The SUPPORT Investigators (1995), A controlled trial to improve outcomes for seriously ill hospitalized patients: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). [Published erratum JAMA 275(16):1632]. JAMA 274(20):1591-1598 [see comments].

Won A, Lapane K, Gambassi G et al. (1999), Correlates and management of nonmalignant pain in the nursing home. SAGE Study Group. Systematic Assessment of Geriatric drug use via Epidemiology. J Am Geriatr Soc 47(8):936-942.