Journal of Pain and Symptom Management
Volume 35, Issue 4 , Pages 388-396, April 2008

Disparities in Pain Management Between Cognitively Intact and Cognitively Impaired Nursing Home Residents

  • Kimberly S. Reynolds, PhD, MPA

      Affiliations

    • School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill
    • Corresponding Author InformationAddress correspondence to: Kimberly S. Reynolds, PhD, MPA, University of North Carolina School of Medicine, Division of Infectious Diseases; Bioinfomatics Bldg., CB # 7030; Chapel Hill, NC 27599-7030, USA.
    • ,
  • Laura C. Hanson, MD, MPH

      Affiliations

    • School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill
    • ,
  • Robert F. DeVellis, PhD

      Affiliations

    • School of Public Health, University of North Carolina at Chapel Hill, Chapel Hill
    • ,
  • Martha Henderson, MSN, DrMin

      Affiliations

    • School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill
    • ,
  • Karen E. Steinhauser, PhD

      Affiliations

    • Durham VA Medical Center, Durham, North Carolina, USA

Accepted 9 August 2006. published online 18 February 2008.

Article Outline

Abstract 

This study tests the association between residents' cognitive impairment and nursing homes' pain management practices. We used chart abstraction to collect data on 551 adults in six North Carolina nursing homes. From the standard data collected in the Minimum Data Set, 24% of residents experienced pain in the preceding week. Reports of pain decreased as cognitive abilities declined: nurses completing the Minimum Data Set reported pain prevalence of 34%, 31%, 24%, and 10%, respectively, for residents with no, mild, moderate, and severe cognitive impairment (P<0.001), demonstrating a “dose-response”-type result. Eighty percent of cognitively intact residents received pain medications, compared to 56% of residents with severe impairment (P<0.001). Cognitively impaired residents had fewer orders for scheduled pain medications than did their less cognitively impaired peers. Yet the presence of diagnoses likely to cause pain did not vary based on residents' cognitive status. We conclude that pain is underrecognized in nursing home residents with cognitive impairment and that cognitively impaired residents often have orders for “as needed” analgesics when scheduled medications would be more appropriate.

Key Words: Dementia, cognitive impairment, pain, health disparities, nursing home, elderly, assessment

 

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Introduction 

Close to 1.5 million Americans reside in one of the approximately 16,500 nursing homes across the country.1 Among this group, both pain and dementia are pandemic: estimates of chronic pain in long-term care facilities range from 45% to greater than 80%.2, 3, 4, 5, 6, 7 In addition, over half of all nursing home residents have some degree of cognitive impairment.8 Managing pain among older adults presents numerous challenges; when individuals are cognitively impaired, this process becomes even more complicated.

Both assessment and treatment of pain in elders involve complexities not encountered as frequently in younger populations. Most pain assessment instruments have not been validated in an elderly population, and a higher incidence of side effects in older adults makes pharmacological interventions more difficult.9 Furthermore, the organization of nursing home care presents obstacles to good pain management. Weissman and colleagues highlight some of the challenges in long-term care settings: physicians are rarely on site, the majority of hands-on care is delivered by nursing assistants untrained in pain assessment, and there can be a hesitancy to use scheduled analgesics because of fear of scrutiny from state and federal surveyors in this heavily regulated industry.10, 11 Pain management has been studied most thoroughly in cancer patients—our understanding of pain is more limited for nonmalignant sources of discomfort. Yet only a small minority of nursing home residents has cancer.12 Much more common are chronic musculoskeletal conditions such as arthritis and osteoporosis,13, 14 conditions for which there is less consensus on best pain-management practices.

The presence of cognitive impairment, with its concomitant memory and communication challenges, further inhibits good pain management.15, 16, 17 Pain assessment typically relies upon individuals' verbal reports; most pain scales use this approach. Signs of pain that might be demonstrated by individuals with cognitive impairment, such as fidgeting, grimacing, and verbal outbursts,18, 19, 20 can be difficult to recognize and interpret. Given these impediments, it is not surprising that cognitively impaired individuals have been found to be at high risk for undertreatment of pain.8, 21, 22 Studies document that cognitively impaired individuals in both nursing home23, 24 and hospital25 settings receive less analgesic medication than their more cognitively intact peers.

In recent years, researchers and clinicians have made gains in validating pain assessment tools in geriatric patients and in cognitively impaired individuals.26 The number of clinical studies on pain management in the demented elderly has increased,27 and several studies, following on the work of Ferrell and colleagues,28 demonstrate that a significant majority of individuals with cognitive impairment can respond appropriately to at least one pain scale.29, 30, 31, 32 Within the medical community and the popular media, there has been a recent surge of interest in the problem of pain. In recent years, both the Joint Commission on Accreditation of Healthcare Organizations and the Centers for Medicare and Medicaid Services have required that long-term care facilities focus more intently on pain management. Given these changes, we sought to explore the extent to which nursing home staff currently are meeting one of the core principles of high-quality palliative care—adequate pain management—when working with residents with cognitive impairment. To address this question, we conducted a secondary analysis of data we collected as part of a nursing home-based quality improvement project. Our study had two primary aims: (1) to determine to what degree nursing staff's assessment of residents' pain varied based on a residents' cognitive abilities and (2) to examine to what degree pain treatment varied by residents' cognitive abilities.

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Methods 

Data Source 

We collected data between 2001 and 2004 as part of a quality improvement intervention in six central North Carolina nursing homes. Participating facilities ranged from 80 to 230 beds and had varied organizational and financial structures. The percentage of Medicaid beds in the six facilities ranged from 40% to 80%, and none of the facilities were experiencing regulatory difficulties at the time of the intervention. All facilities had contracts with local hospice agencies.

The University of North Carolina School of Medicine's Institutional Review Board reviewed and approved this study.

Measures 

Data come from explicit chart abstraction of a random sample of nursing home residents' charts. Chart abstractors with medical backgrounds reviewed residents' charts in each facility, randomly selecting 40% for review. Each abstractor received training in using the data collection instrument, and one investigator reviewed each completed data collection form on site, so that any questions or discrepancies could be resolved immediately. Because the data were collected as part of a quality improvement project that involved tracking change over time, charts in each nursing home were abstracted on two or three occasions. Individual residents, therefore, could have been included in the sample more than once. To create the database for this study, if we reviewed a resident's chart more than once, we used data only from the first time the chart was reviewed. The data set used for these analyses includes 551 residents in the sample.

Every nursing home receiving Medicare or Medicaid funds must complete a Minimum Data Set (MDS) for each resident upon admission, then quarterly, or whenever there is a significant change in a resident's health. In most long-term care facilities, nurses complete this assessment form; these nurses may or may not have direct clinical care experience with the residents for whom they complete the MDS. If they do not care directly for the resident, they use chart notations and other information from staff members who do provide direct clinical care. No items on the MDS are scored by residents themselves.

We used each resident's most recent MDS to collect information on cognitive decision-making abilities, frequency of pain, and intensity of pain. “Cognitive skills for daily decision making” (MDS Item B4) are ranked on a four-point scale, classifying residents as independent in decision-making ability, mildly impaired, moderately impaired, or severely impaired. Scores on this item are the primary independent variable in our analyses.

A range of items measuring residents' pain form the dependent variables in our study. From the MDS, we noted nurses' responses to Item J2, which measures frequency of pain in the last seven days on a three-point scale (no pain, less than daily pain, or daily pain) and, if pain was identified, classified the intensity of pain (mild, moderate, or severe). Chart abstractors also looked at physicians' orders, nurses' notes, each resident's most recent Care Plan, and daily medication reports to determine what pain medications residents received and whether each medication was ordered PRN or scheduled. We used these same chart elements to note whether a resident with pain received any type of nonpharmacological pain treatment, such as massage, repositioning, or hot or cold packs.

We recorded residents' age, race, and sex, and used the “face sheet” in the front of each chart to record each resident's three most significant chronic diagnoses, particularly noting terminal illnesses and conditions that would likely cause pain. The MDS contains a short list of diagnoses, but we chose instead to collect diagnostic information from the face sheets, which allowed us to capture information about a wider range of conditions. We later reclassified diagnoses into a dichotomous variable, categorizing each resident as having a likely painful condition, or as not having a condition that would be expected to cause pain. To create this variable, we developed a list of all diagnoses included in the database. We then asked physicians and advance practice nurses independently to indicate whether or not in most cases the diagnoses listed would be expected to cause pain. Using this method, we achieved 95% agreement between raters. We excluded the few diagnoses over which raters disagreed. We classified 47% of all diagnoses in our database as “likely painful” and 48% as “not likely to cause pain,” and we excluded 5% as indeterminate. Examples of diagnoses in our “likely painful” category include degenerative disk disease, osteoarthritis, cancer, gout, and cellulitis. Some diagnoses in our “not necessarily painful” category were diabetes, blindness, depression, dementia, renal failure, and stroke. Excluded diagnoses consisted of diseases that tend to have intermittent or varied symptoms, such as pancreatitis, transverse myelitis, or multiple sclerosis.

Analysis 

We generated summary descriptive statistics to characterize the sample population. Because we had random samples, independent observations, and categorical measures, the most appropriate analysis technique for our data was Chi-square (χ2). We used this nonparametric test in independent multiple stratified analyses to test the effects of cognitive function on pain management practices, conducting statistical analyses with combined data from the six facilities while also running tests of data from each separate facility. We used the software package SPSS 11.5 for analysis.

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Results 

The resident population in our sample was typical of the national nursing home population: an older, heavily female, predominately Caucasian population, with a wide range of chronic, degenerative diseases of uncertain prognosis. Furthermore, in our sample, as in most nursing homes, a substantial number of people had dementia and other types of cognitive impairment, according to both diagnoses and MDS scores (Table 1).

Table 1. Demographic Profile of Nursing Home Residents (n=551)
CharacteristicValue
Mean age (range), years79 (22–103)
Female, %76.0
White, %69.7
With pain (per the MDS), %24.3

Residents' degree of cognitive impairment, %
None18.1
Mild22.0
Moderate40.8
Severe19.1

Residents with a diagnosis of, %
Dementia39.3
Stroke/CVA26.2
Congestive heart failure22.8
Diabetes19.6
COPD8.9
ESRD4.4
Cancer3.4

The first aim of our study was to determine to what degree the recognition of pain by nursing staff varied based on a resident's cognitive abilities. Nursing home staff completing the MDS reported that, of the 100 residents classified as having no cognitive impairment, 34% experienced pain within the previous week. Documentation of pain decreased in a linear fashion as cognitive impairment increased: of those listed in the MDS as having mild cognitive impairment, 30.6% reportedly had pain. For those with moderate and severe cognitive impairment, the percentages were 23.6% and 9.5%, respectively (P<0.001). Similarly, individuals with no or mild impairment were also more likely to be recognized as having daily and moderate or severe pain, whereas less cognitively alert residents tended to have their pain classified as less than daily and mild. We found a tenfold difference between the proportions of cognitively intact and severely cognitively impaired residents reported as having daily pain and a fivefold difference between these same residents reported as having moderate to severe pain. Table 2 presents this information in more detail.

Table 2. Presence, Frequency, and Severity of Pain (per MDS Report)
Residents' Level of Cognitive ImpairmentP-Value
None (n=100)Mild (n=121)Moderate (n=225)Severe (n=105)
With pain34.0%30.6%23.6%9.5%<0.001
With daily pain19.0%14.9%6.7%1.9%<0.001
With moderate or severe pain25.0%16.5%13.8%4.8%<0.001

Given the large differences in pain reported on the MDS, we examined whether this discrepancy could be explained by differences in diagnoses, with cognitively aware residents more likely to have diseases that cause pain. Using the dichotomous variable we created to classify diagnoses into categories of “most likely painful” and “not necessarily painful,” we discovered, however, that these conditions were similarly distributed among all residents: 51.4% of residents with no or little cognitive impairment had conditions that would likely cause pain, whereas 47.7% of residents with moderate or severe cognitive impairment had diseases that tend to be painful (P=0.494).

Moving beyond pain recognition and looking at pain treatment—the second aim of our study—we examined the relationship of cognitive impairment to both medication use and nonpharmacological treatments for pain. Table 3 presents the distribution of pain treatments by cognitive status.

Table 3. Pain Treatments Received by Nursing Home Residents, by Cognitive Status
Residents' Level of Cognitive ImpairmentP-Value
None (n=100)Mild (n=121)Moderate (n=225)Severe (n=105)
Any pain medications80.0%79.3%63.6%56.2%<0.001
Meds other than acetaminophen62.0%56.2%44.4%34.3%<0.001
“As needed” medications37.0%44.6%32.4%33.3%0.128
Scheduled meds42.0%33.9%30.7%23.1%0.032
Nonpharmacological pain treatments10.0%7.4%6.7%4.9%0.528

We observed significant differences in administration of pain medications. Overall, 69.4% of residents received pain medications, consisting of 21.1% who received acetaminophen on an “as needed” basis (based on review of medication dispensing records), 15.3% who received other medications on an “as needed” basis, and 32.0% who received scheduled pain medications. The greater the degree of a resident's cognitive impairment, the less likely that resident was to have treatment for pain: 80% of residents with no cognitive impairment received pain medication, whereas 56.2% of residents with severe cognitive impairment received pain-relieving medications (P<0.001). Among the residents who received medications to treat pain, the greater a resident's cognitive abilities, the more likely she or he was to receive a drug other than acetaminophen (such as a World Health Organization's “Analgesic Ladder” Step 2 [mild opioid] or Step 3 [strong opioid] medication or an adjuvant pain relief medication).33 Similarly, rates of scheduled pain medications increased with cognitive awareness: 42% of cognitively intact vs. 23.1% of severely impaired residents had orders for scheduled pain medications.

Our analysis revealed that orders for nondrug therapies to treat pain were uncommon for all residents: 7.1% of residents had orders for nonpharmacological treatments for pain, such as scheduled repositioning for comfort or ice packs or heat packs specifically ordered for pain relief. Although administration of nonpharmacological pain relief measures trended in the same direction we observed elsewhere—of lower levels of pain treatment for more impaired residents—this trend was not statistically significant.

To determine that our results were not skewed by aberrant practices in one or two participating facilities, we also examined the data by individual facility. Although small sample size did not allow us to show statistical significance at the individual facility level, trends were all in the same direction as in our six-facility sample, with no outlier facilities confounding the results.

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Discussion 

We found that, among nursing home residents, cognitive impairment is strongly associated with lower reports of pain and lesser treatment of pain. Because we found no differences in potentially painful diagnoses of nursing home residents by cognitive status—a finding supported by previous studies8, 34—we conclude that this difference in part is likely the result of failure to recognize and treat pain in individuals with cognitive impairment. This finding is particularly robust, in that we identify a “dose-response”-type effect between the degree of cognitive impairment and the apparent appropriateness of the pain assessment and management. Although earlier studies15, 17 have found less awareness of and management of pain in cognitively impaired nursing home residents, our study demonstrates gradations in the amount of awareness and management of pain that correlate with the degree of cognitive impairment.

Some may argue that because dementia is a neurological impairment, it could affect the central nervous system experience of pain and result in deterioration in awareness of peripheral pain stimuli. Numerous studies, however, have documented that individuals with cognitive impairment experience pain at rates similar to those without impairment; indeed, some types of dementia may increase the affective pain experience.27, 35, 36, 37

It is also important to recognize that pain is a physical and emotional, as well as a primarily subjective, experience. Pain is exacerbated by numerous factors, such as worry, comparison to a baseline standard, and expectancies of relief.38, 39, 40 Memory also can influence pain in complex ways.41 The multifaceted and subjective nature of the pain experience could lead any particular individual, regardless of degree of cognitive awareness, to feel pain.

As an example, imagine two nursing home residents with diabetic neuropathies, one with no cognitive impairment, and one who has severe dementia. If both residents have a throbbing leg one day, the resident without cognitive impairment may remember that she had a similar excruciating pain last week, whereas the cognitively impaired resident will have no such memory. If pain is exacerbated by memory, the cognitively intact resident may well experience greater pain than the cognitively impaired resident, even though they have similar diagnoses and symptoms.

Alternatively, we can imagine that the severely impaired resident does not have the cognitive wherewithal to understand and interpret her situation—a cognitive process that could make her pain more tolerable. Assuming that this individual is one of the minority of severely impaired residents who receive scheduled analgesics, she likely would not recall that a pain medication is coming at a certain time—another device that can help in coping with pain. If she does not remember that she often has this same pain, this impaired resident could experience anew each day the fear and anxiety associated with a sudden acute pain sensation, rather than a chronic pain to which an individual can adapt somewhat. Under this set of assumptions, one can speculate that greater cognitive impairment would increase, rather than attenuate, the sensation of pain. Under any scenario, however, it is difficult to imagine, given their advanced age and the distribution of their diagnoses, that cognitively impaired nursing home residents do not experience pain.

Recognizing that an individual has pain is the first step to treating pain. Yet our data suggest that nursing home staff often do not take this step. In our study, 24.3% of residents are identified as experiencing pain. Yet we know from in-depth and varied studies of pain in nursing homes that somewhere between 50% and 80% of nursing residents have pain. In our sample, then, the MDS likely underidentifies the number of residents in pain—a finding that has been supported in other studies.42, 43, 44 We do not assume, however, that lower reports of pain in residents with cognitive impairment are the result of staff negligence. Assessing pain in individuals with dementia is an art and science in its infancy. It requires sophisticated skills and ongoing education. With experience and training, nursing home staff have the potential to be at the forefront of advancing knowledge about pain assessment in individuals with cognitive impairment.

However, given that currently nursing home staff often do not identify pain in cognitively impaired residents, it is not surprising that they also are less likely to treat pain among this group. In our sample, residents with moderate-to-severe cognitive impairment were almost twice as likely to receive no treatment for pain as were residents with no or mild impairment. When pain medications were given, cognitively impaired residents received primarily acetaminophen on an “as needed” basis, whereas cognitively aware residents were more likely to have scheduled medications. In a nursing home setting, the most common way to get an “as needed” drug would be for a resident to announce that she or he is in pain and to ask for medication. The other path to pain relief is when a nurse recognizes that a resident is in pain and on her or his own initiates giving a medication.

That first route, asking for pain medication, is simply not possible for residents with serious cognitive impairment. And given the data we have presented here, recognition of pain in impaired residents is uncommon. Although “as needed” medications may be adequate for cognitively intact residents who can advocate for themselves, “as needed” medications are generally inappropriate for nursing home residents with moderate or severe cognitive impairment. We conclude that prescribers tend to order “as needed” pain medications for nursing home residents with cognitive impairment when scheduled pain medications are a better choice.

Our data come from only a small number of nursing homes in one geographic region and, therefore, may be limited in generalizability. Furthermore, we hypothesized that, as with pain medications, residents with greater degrees of cognitive impairment would be less likely to receive nonmedication-based treatments for pain; such treatments are an important aspect of good pain management. But the overall rate of nonpharmacological pain treatments was so low in our sample that we were unable to draw conclusions about disparate applications of nonmedication pain relief. Finally, we have conducted all analyses at the resident level, with no controls for organizational factors. With only six nursing homes in our sample, such multilevel analyses are not possible.

We have attempted to minimize these limitations by including data from facilities representing a broad range of the nursing home spectrum. Staff-to-resident ratios in participating facilities varied from minimally required levels to double that ratio, and study institutions included both for-profit and not-for-profit facilities, health care centers within continuing care retirement communities, hospital-owned facilities, chain-owned nursing homes, independent facilities, and religiously affiliated institutions. This contrasts with previous studies investigating this topic, which used only demographically similar facilities.24, 45

Our study is unique in that we present both MDS and chart abstraction data. The information obtained from charts includes pain medication, nonpharmacological treatments for pain, and diagnoses. Because the MDS alone is an imperfect instrument for documenting pain, the inclusion of multiple sources of information enhances this study. In addition, MDS data are increasingly being used to drive care, and federally mandated quality improvement activities use pain information generated from the MDS as one of their primary measures of quality of care. Therefore, despite its flaws, using the MDS as a tool for gauging how well nursing homes are assessing pain is a valuable strategy, although this study contributes to a growing body of research arguing that the MDS likely underrepresents pain.

Staff within long-term care facilities need to improve their ability to assess pain in their residents. That is probably true for all residents but is a particular concern for residents with cognitive impairment. Nursing home staff, including nursing assistants—who often have the closest and most frequent contact with residents—need training in recognizing and evaluating nonverbal pain cues, and nurses should consider diagnoses when assessing whether a resident is likely to have pain.46, 47 Clinical leadership would do well to implement as standard practice the use of one or more of the pain scales that have been validated for cognitively impaired elders.48, 49, 50, 51 Physicians, physician assistants, and nurse practitioners who do the prescribing in nursing homes need to consider how they write orders. Individuals who cannot verbally communicate their pain or ask for medications should have orders for scheduled, not PRN, pain medications.

Underrecognition and undertreatment of pain can be found throughout the health care system. It is more striking in nursing homes because of the very high rates of dementia within that population. Nursing homes, therefore, present a particular opportunity for innovation and research into improved pain management for persons with cognitive impairment. Knowledge gained in this environment could be applied across health care settings.

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 The Duke Endowment funded the intervention study through which the data for this paper were collected. Kimberly Reynolds's time was supported in part by an AHRQ/NRSA predoctoral fellowship administered through the Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill and a Veterans Affairs postdoctoral fellowship administered through the Health Services Research and Development Service, VA Medical Center, Durham, NC.

PII: S0885-3924(08)00002-X

doi:10.1016/j.jpainsymman.2008.01.001

Journal of Pain and Symptom Management
Volume 35, Issue 4 , Pages 388-396, April 2008

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