Opioids are a type of narcotic pain medication that is used to control pain. Examples include meperidine, methadone, morphine, oxycodone (OxyContin), oxycodone with acetaminophen (Percocet), and hydrocodone with acetaminophen (Vicodin). There is an increasing number of patients with pain addicted to opioids. According to the Centers for Disease Control and Prevention, opioid overdoses have quadrupled since 1999. Nurses play a vital role in preventing opioid addiction in patients with pain through nursing assessments and monitoring of their patients.
Here are 4 essential steps that nurses can take to help prevent opioid addiction.
1. Perform a comprehensive assessment of pain by using a standardized pain assessment tool.
Nurses need to assess the individual patient’s pain location, characteristics, onset, duration, frequency, intensity or severity, precipitating factors of pain, and how the individual manages his or her pain.To learn more about pain assessment tools, visit www.paincommunitycentre.org/article/pain-assessment-tools.
2. Assess the patient’s pain management and medications used.
Pain medication should be matched to the individual patient’s needs. It is important that nurses assess the patient’s detailed medical history, including a list of currently prescribed and past medications, as well as a history of substance use or substance use disorders in the patient and the patient’s family. Keep monitoring patient use of medications and opioids to avoid overdependence or potential addiction.
3. Evaluate the effectiveness of the pain management through ongoing assessment of the individual patient’s pain experience.
Proper evaluation of pain management requires that all patients have a treatment entry diagnosis that is defined, standard, and objectively determined. An ongoing assessment of the patient’s pain experience during and after treatment is vital for preventing pain medication misuse. Patients can become addicted if they take pain medications or opioids too much or for a long period of time.
4. Educate your patients about pain management.
A better patient understanding of the nature of pain, its treatment, and the side effects and complications is one of the most important steps toward improved control of pain and pain medication use. Nurses should provide written instructions about dosage, adverse effects, how long the medication should be taken, and how to store and dispose of unused medication. Opioids can be dangerous if patients take them with alcohol, or with certain drugs such as antihistamines, sleeping pills, and some antidepressants. Nurses can also introduce the use of non-pharmacological techniques (e.g., relaxation, guided imagery, music therapy, distraction, massage, lifestyle modifications, and heat and cold application) before, during, and after feeling pain to control and reduce pain.
“The human toll of prescription opioid use, abuse, dependence, overdose, and poisoning have rightfully become a national public health concern,” McAllister says, noting that opioid drug abuse was named an emergency by President Trump. “The sheer magnitude of America’s prescription opioid abuse epidemic has evoked visceral responses and calls-to-action from public and private sectors. As longtime advocates of drug-free management of acute, subacute and chronic back, neck, and neuro-musculoskeletal pain, the chiropractic profession is aligned with these important initiatives and committed to actively participate in solving the prescription opioid addiction crisis.”
What can concerned patients and health care teams do? “Begin treating pain with conservative options first,” says McAllister. Many people suffering from pain just want it to go away and often hope the pain medication will hasten that. As nurses know so well, pain medication treats the symptom, but not the underlying problem. “But the opioid emergency demonstrates that masking pain can lead to long-term persistence of both the pain and the drug use,” she says.
The necessity for finding alternatives that will help people without exposing them to the risk of addiction or dependence is clear. “Data released by the Centers for Disease Control and Prevention (CDC) revealed that ‘opioid deaths continued to surge in 2015, surpassing 30,000 for the first time in recent history,’” says McAllister. The rates continue to rise.
Often addiction starts with something as simple as dental work or as common as a back injury. McAllister cites an April 2017 report on lower back pain in the Annals of Internal Medicine that “strongly recommends non-pharmacological treatment” that suggests a long list of first-line alternatives including heat, massage, acupuncture, exercise, multidisciplinary rehabilitation, mindfulness-based stress reduction, tai chi, yoga, motor control exercise, progressive relaxation, electromyography biofeedback, low-level laser therapy, operant therapy, cognitive behavioral therapy, or spinal manipulation.
If those options don’t work, moving on to medication trials of non-steroidal anti-inflammatory medications (like Aleve or ibuprofen) or muscle relaxants should be tried. Opioids are considered an option if all these other methods have failed to provide necessary relief. But they should only be prescribed after assessing each individual case and with a discussion with the patient about realistic pain management expectations and what the risks are.
Nurses can help deliver information about pain management options to their patients while not minimizing the impact chronic pain has on their lives. They can encourage therapies that don’t include medication and back it up with the proven evidence that these approaches help patients in the long term.
Few things can be more heartbreaking for a nurse than watching a patient who is in pain and knowing there’s little that can be done about it. Every day, however, patients come to hospitals across the country with severe, debilitating pain—yet instead of receiving compassionate care, they’re met with cold indifference. These patients have sickle cell disease.
“A lot of nurses and health care professionals in general have preconceived, erroneous ideas that sickle cell disease patients are just drug seekers,” explains Bonnye Johnson, RN, MSc, community health educator and outreach coordinator at the University of Illinois at Chicago (UIC) Sickle Cell Center. In reality, these patients are hurting, and it’s often up to nurses to make sure they receive the pain control and disease management care they urgently need.
Sickle cell disease, also known as sickle cell anemia, is the most common inherited blood disorder in the United States, affecting 70,000 to 80,000 Americans. It causes the body’s red blood cells to harden and become shaped like crescents, or sickles, instead of resembling healthy, round discs. As these sickle cells travel through the bloodstream, they tend to get stuck in narrow blood vessels, cutting off the flow of blood and causing excruciating pain.
This serious disorder is most common among people whose ancestors come from Africa, South and Central America, the Arabian Peninsula, India and Mediterranean countries, including Turkey, Italy and Greece. In the U.S., it is especially prevalent in the African American population, where an estimated one in 500 people has the disease.
The only cure for sickle cell disease is a bone marrow transplant, but it’s a risky procedure that’s not available to most patients. The alternative is to simply manage the chronic discomfort. Even with excellent home care, many patients regularly suffer sickle cell crises that cause terrible pain, typically in the back, chest, legs or joints. The pain often forces patients to rush to the emergency room to be treated with powerful pain medicine— usually narcotics, such as morphine and oxycodone.
Pain and Prejudice
Because sickle cell disease disproportionately affects people of color, all too often these patients must overcome barriers of stigma, bias and cultural misunderstanding to receive the care they need. Sadly, once many patients arrive in the ER, they face hourslong delays. As an added insult, once they do receive attention, they often face skeptical nurses and doctors who believe they’re there to abuse the system. Sometimes the patients don’t receive any medication at all.
Tosin Ola, RN
“I’ve been discharged from the ER while still crawling on the floor in pain,” says Tosin Ola, RN, a nurse from Portland, Ore., who has sickle cell disease. “It felt like no one wanted to help me.” “I’ve worked in ERs at several hospitals,” says DeEtta Cook, RN, a graduate student and full-time nurse at DePaul Health Center in St. Louis. “Regardless of the patient’s clinical indicators, there seems to be a perception that sickle cell patients are just there because they’re seeking narcotics. When patients request pain medicine, I’ve sometimes heard nurses say to each other, ‘Oh, that person just wants to get drugs. They know they’re not in that much pain.’ This starts the beginning of what I would call culturally incompetent care.”
Part of the problem, says Michelle McCreary, RN, who works at the Banner Good Samaritan Medical Center in Phoenix, Ariz., is that sickle cell patients may not always “look” sick. “These patients are not swollen or bleeding. Instead, they have joint pain. Since they don’t always exhibit pain symptoms outwardly, they feel that they’re often ignored,” she explains. “I hear stories like this all the time. The patients become extremely frustrated because they feel like they’ve been stereotyped as drug addicts.”
In many cases, minority patients who have encountered this type of discrimination are reluctant to make subsequent visits to the hospital, even if they’re having a pain crisis. “What happens instead is that they’ll often wait until their pain level is too high before they come and seek treatment,” says Johnson. Unfortunately, waiting too long in a sickle cell crisis can increase the risk for severe—even deadly—complications.
Furthermore, patients who have had bad past experiences in the emergency room are more likely to become defensive or hostile on subsequent visits. This escalates the problem, creating even more barriers. “Nurses are often offended by how these patients [present] and how they communicate,” says McCreary. It’s important for nurses to walk in the patient’s shoes, Johnson emphasizes. Many people with sickle cell disease were told that they wouldn’t live past their 20s. They often live with chronic discomfort.
“Imagine that you’ve been in pain a large portion of your life. You’d probably have a lot of social, emotional and self-esteem issues,” she points out.
With that in mind, nurses shouldn’t take it personally if a patient reacts negatively. Instead, the best solution is to treat the person with dignity and empathy.
“Many people don’t understand how deep the connection is between the nurse and the patient,” says Ola. “But for me [as a sickle cell patient], it impacts how I see the whole admission process. If I believe my nurse is there for me, I feel a whole lot better.”
Here are some additional ways nurses can close the gap of pain management disparities and provide culturally competent care to all sickle cell disease patients.
Ask, Then Listen
Culturally sensitive sickle cell care begins with looking beyond the preconceived notions and stereotypes to see the real patient underneath.
“You have to become the patient’s advocate,” says Cook. “Ask them if they’re in pain, and keep asking them if they’re still in pain. Ask them even after the initial dose of medication has been administered. Don’t arbitrarily decide to stop treatment just because you don’t want to give them drugs.
“Nurses should not allow their subjectivity to determine how they treat patients,” she continues. “Just view the patient as someone who’s in pain and needs health care, not as someone who’s seeking drugs. The measure that you have for if a pain medication is working is what the patient tells you.” Adds Johnson, “These patients have been in pain all their lives. Anyone who lives with chronic and acute pain tends to know what works for them in terms of pain management.” So listen to your patient!
This may seem like obvious advice, but the facts suggest that physicians and nurses don’t always follow it. “When we look back at the data, we find that [sickle cell] children actually receive more narcotics than the adults,” says Evelyn L. Brown, MSN, RN, CNS, coordinator of the sickle cell disease program at Children’s Hospital of Wisconsin in Milwaukee. Of course, an adult would need more medicine than a child, but apparently health professionals are not providing the appropriate level of pain medication when asked.
Another reason why practitioners may withhold opioid pain medication from a sickle cell patient is fear that the patient will develop a narcotic dependency. “But we [doctors and nurses] don’t make a person a drug addict. That’s an internal mindset,” Brown argues. “Instead, the key is to monitor the patient and establish a relationship. If [I have a good relationship with the patient], we can talk and we can work together [to find the safest medical solution].”
While it is often easier to build a mutually trusting relationship when nurses and patients share the same ethnicity, it’s not an absolute necessity. Majority nurses who work with minority sickle cell patients say that listening to patients and treating them with respect can go a long way toward bridging cultural gaps.
“When I first took this position, I wasn’t sure if I’d be accepted as a teacher and role model for a predominately African American population,” says Diane Batham, MSN, RN, PHN, a pediatric sickle cell nurse educator and coordinator at Kaiser Permanente West Los Angeles Medical Center. Batham is Caucasian. “But when I spoke to my patients’ families about it, they said, ‘Oh, Diane, don’t be silly, you know us.’ They told me that what mattered most to them was that I took the time to ask questions and to get to know them.”
Another important reason to establish a relationship with your patient is that you’re more likely to identify complications. Nurses can never assume that a patient who is having a sickle cell crisis just needs to get their medicine and go home. If a patient presents with chest pain, he or she could be experiencing acute chest syndrome (ACS). This extremely serious complication occurs when blood vessels in the lungs become clogged with sickle cells. ACS greatly increases the risk of infection and lung damage, and requires urgent care. Other complications include blindness, pneumonia and stroke. The results can be fatal.
“Many times, nurses are shocked when someone dies from sickle cell complications,” says Brown. But if nurses are knowledgeable about what to look for and make a point not to simplify the patient’s problems, they can recognize the signs of a life-threatening crisis and intervene appropriately.
Get Families Involved
“Sickle cell disease affects the whole family, so taking care of patients—whether they are pediatric or adult—involves everyone,” says Batham. “Nurses must do their best to make sure that all the people who are important to that patient are involved in helping to care for him or her.”
Families can also help by creating a home environment that eliminates triggers for sickle cell crisis, such as extreme heat, cold or increased stress.
Where to Go for More Information The Sickle Cell Information Center at Grady Health System Centers for Disease Control and Prevention MedlinePlus (National Library of Medicine) National Heart, Lung and Blood Institute Sickle Cell Disease Association of America International Association of Sickle Cell Nurses and Physician Assistants National Marrow Donor Program
Nurses should make sure patients’ family members know the importance of being on the national bone marrow donor registry. “Often a family member match for the patient, or for someone else,” says Brown. “We try to remind everybody about the registry. They could be the one to help save a life.” Because sickle cell disease is hereditary, nurses can help educate parents whose children have been diagnosed with the disorder, as well as sickle cell patients who fear that their future children may inherit the disease. Sickle cell disease is caused when each parent carries a recessive gene for the disease, and both parents pass the sickle cell gene on to their baby. Children who are born to parents who both carry the sickle cell trait have a one in four chance of inheriting the disease. Babies who receive the sickle cell gene from only one parent will not have the disease, but will be carriers of the trait.
“Our hospital tests newborns for sickle cell, and out of all our infants who test positive, probably only 40% of the parents knew they were carriers. The other 60% are just totally shocked,” says Brown. “Many of these parents have other children who are healthy, so they are especially surprised when they find out they have a child with sickle cell disease.”
Nurses who treat adult sickle cell patients who want to have children can assist them in finding resources, such as genetic counseling. It is definitely possible for mothers with sickle cell disease to have healthy pregnancies, but nurses can be an important link in helping them become better informed about their options.
Become an Advocate
Nurses as a group can use their powerful collective voice to speak up for more equitable funding for sickle cell disease research. There are huge disparities between the amounts of federal research dollars allocated to sickle cell when compared to other disorders.
For example, every year there are three times as many babies born with sickle cell disease than with cystic fibrosis—8,000 versus 2,500. However, according to the National Institutes of Health, for every baby born with CF, there are $2,733 research dollars spent to find a cure. In contrast, for every baby born with sickle cell anemia, only $345.58 is spent. That’s less than oneeighth of the CF budget per infant. While it’s important to find cures for both disorders, nurses can be important advocates in making sure sickle cell disease isn’t ignored.
Nurses can also become patient advocates by volunteering with non-profit organizations that help sickle cell patients, participating in committees to improve quality of care and donating money to sickle cell charities.
Perhaps most important, nurses can advocate for more culturally competent sickle cell care by educating their peers about the disease, so that other nurses don’t fall prey to the common misconceptions and prejudices that can create barriers to treatment for patients of color.
“As a young nurse, I was brought up to [be culturally knowledgeable about this disease], because I was mentored by some great people,” says Batham, who’s been a nurse for over 21 years. “I would encourage other nurses to become role models.” All patients who have sickle cell disease deserve to be treated equally, and the care they receive should be based on objectivity, compassion and respect. In many cases, it’s up to the nurse to make sure that happens. “We have to convey to the patient that they have rights,” says Cook. “If they’re in pain, they deserve to be treated.”
“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.
Assessing Culture, Anticipating Barriers
Nurses Beverly Green-Rashad (standing) and Joycelyn Westbrooks (far left) lead a group session on pain management.
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:
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.
Join an Internet Project to Build Cross-Cultural Collections of Pain Descriptions Pain researchers Eun-Ok Im, RN, PhD, MPH, CNS, of the University of Texas, Austin, and Wonshik Chee, PhD, of the University of Texas, San Antonio, are currently testing a cross-cultural decision support computer program (DSCP) designed to assist nurses’ decision-making on cancer pain management. They are seeking the participation of minority nurses to help them refine and test the program. This project holds promise of reducing ethnic and gender disparities, but more minority nurses (African American, Asian, Hispanic) are needed to meet the project’s goals. If you are interested in participating or would like more information, call (512) 475-6352, email [email protected].
“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.”
Pain researcher Dr. Eun-Ok Im (center) with research assistant Ching Yu-Cheng.
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.
Setting Mutual Goals for Pain Control
“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.
Continuing the Conversation
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.
Dr. Linda Burhansstipanov (back row, far left) executive director of Native American Cancer Research, with NACR Staff at a 2003 wellness event.
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.
Teaching Patients to Talk About Pain
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.
McCaffery, Margo and Pasero, Chris (1998). Pain: Clinical Manual for Nursing Practice. St. Louis: Mosby.
Giger, J.N. and Davidhizer, R.E. (2004). Transcultural Nursing: Assessment & Supervision. 4th Edition. St. Louis: Mosby.
Spector, R.E. (2003). Cultural Diversity in Health and Illness. 6th Edition. Indianapolis: Prentice Hall.
Oncology Nursing Society. Multicultural Tool Kit: Moving Toward Cultural Competence.
University of Southern Indiana School of Nursing and Health Professions. “Module V: Unit One: Cultural Diversity and Pain Management.”
Brant, Jeannine M. “Cultural Implications of Pain Education, A Native American Example,” presented at Cancer Pain and Education for Patients and the Public conference, City of Hope National Medical Center, Duarte, Calif., October 18, 2001.
Center for Research on Chronic Health Conditions in Rural Dwellers. “Pain Management and Telehealth for Crow Indians 2001-2002,” pilot study funded by the National Institute of Nursing Research.
Burhansstipanov, L. and Hollow, W. (2001). “Native American Cultural Aspects of Nursing Oncology Care.” Seminars in Oncology Nursing. Vol. 17, No. 3, pp. 206-19.
Gunnarsdottir, S., Donovan, H.S., Serlin, R.C., et al. (2002). “Patient-Related Barriers to Pain Management: The Barriers Questionnaire II (BQ-II).” Pain, Vol. 99, pp. 385-96.
Anderson, K.O., et al. (April 15, 2002). “Cancer Pain Management Among Underserved Minority Outpatients: Perceived Needs and Barriers to Optimal Control.” Cancer, Vol. 94, No. 8, pp. 2295-304.
Gunnarsdottir, S., Donovan, H.S., and Ward, S. (September 2003). “Interventions to Overcome Clinician- and Patient-Related Barriers to Pain Management.” Nursing Clinics of North America. Vol. 38, pp. 419-34.
Ward, S., Donovan, H., Gunnarsdottir, S., et al. “A Representational Intervention to Decrease Cancer Pain (RIDcancerPain),” in preparation for publication.
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