“Consistent with the Institute of Medicine’s report on health care disparities, racial and ethnic disparities in pain perception, assessment and treatment were found in all settings (i.e., post-operative, emergency room) and across all types of pain (i.e., acute, cancer, chronic nonmalignant and experimental). The literature suggests that the sources of pain disparities among racial and ethnic minorities are complex, involving patient (e.g., patient/health care provider communication, attitudes), health care provider (e.g., decision making) and health care system (e.g., access to pain medication) factors. There is a need for improved training for health care providers and educational interventions for patients. A comprehensive pain research agenda is necessary to address pain disparities among racial and ethnic minorities.”
--Green, C.R. et al (2003). “The Unequal Burden of Pain: Confronting Racial and Ethnic Disparities.” Pain Medicine, Vol. 4, No. 3, pp. 277-94.
“Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does.”
--Pain expert Margo McCaffery
“The lightning struck, and it went deep in the roots.”
--A Native American patient’s description of pain
There’s no doubting the evidence of racial and ethnic disparities in pain control. But to date health care professionals still know more about the barriers to equal treatment than about how to overcome them.
The record suggests that we need to go back to the ultimate “authority”--the patient. To again cite McCaffery’s famous definition of pain, created in 1968 and still widely used today, pain is indeed what the patient says it is, and it’s as bad as the patient says.1 Practice guidelines and accreditation standards require that clinicians ask patients about their pain--and that they continue to assesses it, measure it and reassess it.
But what if patients don’t “say”? Or if cultural and/or linguistic barriers prevent health providers from understanding what the patient says? Often, pain management disparities arise out of the conversations clinicians have with minority patients about their pain--or the conversations they don’t have or the ones they misunderstand, or perhaps nurses’ follow-up conversations that don’t get reported back to prescribing physicians.
“Lack of descriptions of pain is our chief barrier,” asserts pain researcher Eun-Ok Im, RN, PhD, MPH, CNS, associate professor in the School of Nursing at the University of Texas in Austin. “[As a result,] pain experiences are ignored.”
Nurses are responsible for consistent pain assessment, evaluation and follow-up. Minority nurses have unique opportunities to improve communication about pain and to work with minority patients as partners to achieve equal quality pain care.
No single formula exists for profiling patient groups on pain and culture, but new editions of classics from the nursing literature offer frameworks you can use.1, 2, 3 It’s essential to develop the cultural profile after contact with the patient rather than to apply predetermined stereotyped concepts. Some pain assessment curricula4, 5 incorporate Giger and Davidhizer’s six cultural categories for profiling patients:
1.Communication--language/dialect, willingness to share, gestures, eye contact, emotional expressiveness, reticence, respect, deference.
2.Space--comfort level and proximity to others, touch practices.
3. Social organization--family relations, role of elders, gender issues, religion.
4. Time--past versus present orientation, attention to schedules/timetables.
5. Environmental control--mastery of nature, health prevention values, health and illness beliefs.
6.Biological variations--appearance, genetic inheritance, disease susceptibility, nutrition.2
Anticipate common cultural barriers that can arise in health care settings. For example,
people of color may have issues with the “white Western medical model,” from its prizing of autonomy and individualism to its neglect of spiritual perspectives and traditional healing practices to the all-white faces on brochures.
“If you’re not sensitive to the polarity between collectivism and individualism,” says Guadalupe Palos, RN, DrPH, LMSW, an oncology nurse, professor and multicultural researcher in the Department of Symptom Research at The University of Texas M.D. Anderson Cancer Center and School of Public Health in Houston, “you may be amazed and even disturbed to find 20 relatives around your patient’s bed--very contrary to the biomedical model based on autonomy.”
Stubborn provider-related misconceptions about opioids can compound discrimination, fears and misconceptions for racial and ethnic minority patients. They may be victims of labeling (“frequent fliers” seeking drugs in the ER), hypersensitive about their country of origin’s reputation for drug trafficking, confused about “withdrawal” versus tolerance, worried about a family history of substance abuse, or deprived of needed medications (because pharmacies in minority neighborhoods are less likely to stock adequate supplies of prescription pain medications than those in predominantly white neighborhoods).
For some minority nurses who are recent immigrants to the U.S., cultural traditions may affect their communication with and about patients in pain, reports Brigitte M. Failner, RN, MS, ONC, manager and clinical nurse specialist in orthopedics at Cedars-Sinai Medical Center in Los Angeles, which has a significant multicultural nursing staff. For example, these nurses’ culturally based deference to physicians or to patients’ families might contribute to under- or overmedication of pain.
“Goals for pain relief were the single best predictor of the quality of pain management,” concludes a recent pain expert literature review. However, goals must be mutually meaningful. Nurses must avoid one-sided guesswork and instead reach for real patient outcomes.
“Sometimes nurses think they can tell whether a patient is in pain, but you can’t just [assign a score on the pain scale]. You have to develop a relationship with the patient and family before you get that far,” warns Jeannine M. Brant, RN, MS, AOCN, oncology clinical nurse specialist and pain consultant at St. Vincent Healthcare in Billings, Montana. She has been working with Native American groups, the largest minority subpopulation (7%) in the state.6, 7
“We need to respect patient reports, but we must also be alert to other factors,” observes Beverly Green-Rashad, RN, MSN, operative care line nurse executive at the Michael E. DeBakey VA Medical Center in Houston. She and her nurse colleague, clinical educator Joycelyn Westbrooks RNC, MPH, both African Americans, have led participation in the national VHA-IHI (Institute for Healthcare Improvement) Pain Collaborative.
“Consider, for instance, a patient who comes in with a ‘4’ or a ‘3’ on the 1-10 [pain] scale yet says he can’t walk, dress or do other daily living activities,” Green-Rashad continues. “Pain is really affecting this person negatively. You may notice behavioral signs--frowning, moaning--or changes in vital signs. I don’t think one parameter can be used exclusively. You have to put them all together.”
Work closely with your patient to agree on measurable goals for pain management. “Our institution expects us to use the 0-10 numeric scale, which has advantages for our [Spanish-speaking] patients, whose local dialect differences could throw off tools using general Spanish word descriptors,” says Palos. To facilitate settling on a goal, she recommends trying the approach of categorizing numeric ranges into mild (1-4), moderate (5-6) and severe (7-10).
However, this framework, as used in the popular BPI (Brief Pain Inventory), has recently been found culturally inadequate for assessing chronic pain in another minority population: reservation-bound Native Americans. Pain measurement tools that rely on numbers or any kind of linear format, such as a row of faces, won’t work for Native American patients, explains Linda Burhansstipanov, DrPH, MSPH, CHES.
Burhansstipanov, who is of Cherokee heritage, is executive director of Native American Cancer Research (NACR), in Pine, Colorado (www.NatAmCancer.org). NACR and the National Native American Cancer Survivors’ Support Network have been collecting patients’ descriptions of pain through focus groups and structured interviews.8 What happens when numeric scales are used? In one group, most Native elders responded “4” to queries about their pain severity. Further questioning revealed that “4” was chosen as “a good number” or “a spiritual number” or because it had other cultural significance--but nothing to do with pain severity.
Listen and probe carefully to find out what is really happening with each patient’s pain. Review your patient’s cultural profile on communication and be familiar with the most frequent patient-related barriers to pain management. These include fatalism, fear of addiction, fear of tolerance, concerns about side effects, the need to be a “good patient” (not complaining), fear of distracting the provider (by talking about pain), prevention of monitoring (because analgesics mask symptoms) and fear of harm to the immune system.9
Native American patients, report Brant and others, may think that asking for pain medication is disrespectful because it implies that health care providers don’t know what they are doing. “Clinicians may feel that American Indian and Alaska Native patients are uninvolved, passive and uninterested in their care,” says Burhansstipanov, “when in fact the patient is demonstrating respect for the provider through silence and listening.”
Palos finds “too much [saying] ‘yeah, yeah’ with head nodding” a warning indicator in Hispanic and African-American patients. Another clue that communication between nurse and patient may not be going well pops up when the patient and family members suddenly start speaking in their own language--for example, after questions such as, “Is pain keeping you from eating?”
An Asian patient’s reticence in reporting pain may be deliberate underreporting because of a cultural stigma attached to narcotic analgesics, says Eun-Ok Im. But a clinician applying his or her organization’s preferred pain assessment tool might put into the record that this patient does not need pain medication.
Always be very careful in judging patients as “noncompliant,” warns Brant; that label can harm. Instead, probe for the logic, in patients’ eyes, of not taking their medications as prescribed. Brant recounts the case of a Native American man with a gastric tumor who thought he must have been doing something wrong in his life and thus “needed to have peace with the Creator.” He stopped taking his medications and went to a traditional healer. “Now we have learned to call on the medicine man to bless our medicine,” Brant reports. “Some patients believe that ‘if a pill isn’t blessed, it won’t work.’”
Clinicians who lack knowledge of Native American culture may find themselves baffled by Indian patients’ manner of talking about pain, which is full of metaphors and images from nature instead of expected descriptors such as “sharp,” “throbbing” and “stabbing.” In all tribal cultures, stories and/or symbols are honored components of the Native worldview, observes Burhansstipanov.
In focus groups of Native cancer patients, she adds, “natural symbols such as lightning, trees with deep spreading roots, the spider’s intricate web and others, along with [symbols] significant to ritual and spiritual expression, such as the big drum, drums of various tones and the resonance of flutes,” effectively evoked understandings about pain location, intensity, quality and duration. They also helped focus group participants make sense of pain experiences in the broader context of connectedness and the wholeness of creation.8
But look at what happens to communication when this shared cultural symbolism is taken outside the circle of understanding and thrust under the cold scrutiny of non-Indian clinicians. Burhansstipanov recollects an interaction between a breast surgery patient and a clinician: The patient and her family talked about lightning striking a tree and a big drum pounding harder and harder, but the clinician reported in the medical record that the patient was “uncooperative,” “in the midst of a psychotic break” and “unable to answer pain assessment questions put to her.” He told her to come back in nine months if her pain persisted. Of course, the pain did persist, but she didn’t come back and her condition deteriorated into a complex regional pain syndrome.
Khari LaMarca, MPH, MA, founder and executive director of The UnBroken Circle, an advocacy organization dedicated to eliminating disparities in pain management, palliative care and end-of-life care, backs these observations up, dating from earlier work with NACR. She cites more pain descriptions from Native patients that clinicians miss or misconstrue as “crazy”: “I looked deep into the well, and when I did there was a flash,” and from Alaska, “The salmon can’t run because it’s just too deep.” LaMarca, who is of Kiowa, Apache and Rosebud Sioux heritage and a pain survivor herself, has prepared a train-the-trainer program to reach Native Americans in pain and is developing the Inter-Cultural Pain Action Network.
So it all comes down to communication with the patient. Tested interventions suggest that helping minority patients communicate with their providers--and vice versa--holds promise for starting them on the road to pain management parity. The Native American pain care initiatives mentioned earlier are already starting to make inroads for one important disparities-burdened group. Two other promising patient education interventions now undergoing further testing are targeted to African Americans, Asian Americans and Hispanics.
K.O. Anderson of the M.D. Anderson Cancer Center and her colleagues (including Guadalupe Palos) have found that socioeconomically disadvantaged African American and Hispanic patients can benefit from educational interventions on cancer pain that dispel myths about opioids and teach patients to communicate assertively about their pain with their physicians and nurses. The patients agreed on what should go into educational videos and booklets to help patients become advocates for their own pain management: “information about pain medications and their side effects, how to work with health care providers to manage pain, and encouragement to use religious faith to cope with pain.”10
Meanwhile, a “representational approach” first developed at the University of Wisconsin-Madison School of Nursing offers a flexible framework for nurses to get cancer patients to delve deeply into their own belief systems about health, disease, pain, etc., and to add sound concepts that will work for them.9, 11, 12 The program is called Representational Intervention to Decrease Cancer Pain (RIDcancerPain).
Sandra Ward, RN, PhD, FAAN, Helen Denne Schulte Professor at the University of Wisconsin-Madison School of Nursing, and her former student, Heidi Donovan, RN, PhD, now assistant professor in the Department of Acute/Tertiary Care at the University of Pittsburgh School of Nursing, worked with colleagues to develop the project. “For starters, we know what doesn’t work: education alone,” Ward asserts. Adds Donovan, “People’s representations are based on well-developed beliefs about health, and most of these belief systems are resistant to change.”
In a randomized trial, RIDcancerPain was compared with a standard educational intervention (a Q & A booklet) for People of Color (African Americans, Asians, Hispanics, East Indians) and Caucasians and was found to decrease patient-related attitudinal barriers in both the POC and Caucasian groups.12 The standard method, on the other hand, worked only for the Caucasian group, which strongly suggests that the representational intervention is more culturally sensitive. With RIDcancerPain, nurses take the patient through six steps:
1.Representational assessment--the patient describes beliefs about cancer pain along five dimensions (identity, cause, time-line, consequences and cure/control).
2.Exploring misconceptions, with emphasis on their origins.
3.Creating conditions for conceptual change by discussing the limitations of holding beliefs that are misconceptions--i.e., what one loses by maintaining those beliefs.
4.Introducing replacement information.
5.Summarizing and discussing benefits of adopting beliefs that are credible replacements.
6.Developing a plan and strategies.
This problem-solving out loud lets patients air strong beliefs in their own words and then see how some notions might not get them the outcomes they want. This works effectively with the opioid issues--such as misconceptions about addiction--that can thwart adequate analgesic use for many racial and ethnic minority patients.
Donovan suggests ways to work within the patient’s pain experience. When a patient talks about consequences, such as “too much pain to walk the dog,” the nurse facilitator can remind patients of options for timing their medication in order to feel good for activities that they value. “For patients who tell me they are not taking their medication because of concerns about side effects,” Donovan continues, “we can tell them that if they take the medication on a regular schedule, their body will adjust and most of the side effects will go away.”
Suggesting specific actions reinforces behavior change--e.g., “call your doctor tomorrow” (if the patient hasn’t been sleeping at night) or “be sure to take your medication before you go bowling Tuesday.” For the intervention now under more testing, an option has been added for patients to bring a significant other into the process. Involving family in pain care has been shown to increase compliance with treatment.1
One final possible improvement to try: Add follow-up sessions. In theory, RIDcancerPain can be played out in an hour, but it could be enhanced as a monitoring check for certain challenging cases.