Women and Minorities: Introduction

The role of race, ethnicity and gender in the treatment of pain is widely studied and reported on by the government, medical specialty agencies and pain advocacy groups. An Internet search of this topic using a well-known search engine, bounces back with over 90,000 results.¹⁷ Article titles such as; “Pain Weighs Heavier on Racial, Ethnic Minorities,” “NMA Panel says Untreated Pain is a Public Health Crisis for Minorities,” “Women’s Pelvic Pain Not Taken Seriously,” and “Pain and Prejudice” mirror a growing awareness of the pain treatment inequities suffered by women and minorities.

The problem with pain in the United States is not that we don’t have the technology to treat it; the problem is that we simply under treat it. Across the board, whether it is acute pain, non-malignant pain, cancer pain and/or other types of pain syndromes, women and minorities, like the elderly and children, are getting the short end of the stick. Bottom line-they have less access to pain medications.

Examples:

1. A study of 281 Hispanic and non-white outpatients with recurrent or metastatic cancer showed that 65% of the patients with pain did not receive analgesic medication as recommended by World Health Organization guidelines.¹⁸
2. The percentage of patients with inadequate pain treatment is significantly higher in community clinical oncology programs that treat predominantly African American and Hispanic patients than in other settings.¹⁹
3. White patients are significantly more likely than African American patients to receive analgesics (74% versus 57%) despite similar records of pain complaints.²⁰
4. African American and Hispanic patients with severe pain are less likely than white patients to be able to obtain commonly prescribed pain medicines, because pharmacies in non-white communities typically do not carry adequate stocks of opioids.²¹
5. Hispanics with broken arms or legs were twice as likely as whites to go without pain medication during emergency room visits.²²
6. Women are commonly given sedatives instead of painkillers because their pain is perceived as “all in her head."²³

Consider this anecdote:
Sabrina Dudley Johnson, an African American woman with fibromyalgia, went to the same doctor as two friends who also have fibromyalgia. Her pain was treated with Tylenol-3, and she was told to go home and take two aspirin. The other two women, one Hispanic and the other Caucasian, received prescriptions for Oxycontin.²⁴

What biases do you think played a role in the above treatment decisions? In examining your own decision-making process regarding pain treatment for women and minorities, ask yourself the following questions:

• If a female patient tells you that on a scale of 1-10 her pain is an 8 or 9, do you think to yourself that her pain is really a 4 or 5?
• In treating racial/ethnic minorities for pain, have you ever not prescribed opioids (or prescribed a much lesser dose of opioids) because of preconceived notions about substance abuse?
• Do you treat patients who quietly endure their pain with more compassion and attention than patients who are very expressive about pain?
• Is it easier for you to believe reports of pain from a man rather than a woman? From a white person rather than a person of Hispanic origin?
• Are you more likely to prescribe higher doses of analgesics to someone of the same gender?
• Do you ever not prescribe opioid analgesics because you fear the patient can’t afford them or because you suspect their local pharmacy wouldn't carry them?
• Do you believe that women cope with pain more effectively than men?
• Do you feel that there is a normal amount of pain for specific diseases/conditions, and variations from the norm should be discounted?
• Are you more likely to take interest in treating pain in a patient who shares your same racial/ethnic/cultural background than one who does not?

Health care providers are urged to examine whether their own belief systems and prejudices are counterproductive to effective pain treatment practices and outcomes for women and minorities.

Common Causes of Pain
Like the general population, women and minorities suffer pain caused by a number of diseases, conditions and procedures, including cancer, arthritis, migraine headaches, and surgery. Women are additionally affected by chronic pelvic pain, and racial/ethnic groups are impacted disproportionately by sickle cell anemia, HIV/AIDS and diabetes.

Cancer
Cancer is the leading cause of pain in minorities. As such, it is worth noting that there are differences in cancer rates for racial groups, with African Americans assuming the greatest burden. Overall, African Americans have the highest cancer incidence rate of any ethnicity.²⁵ Further, African American females have

• the highest incidence of certain cancers, including colon/rectum and lung/bronchus.
• higher death rates from breast cancer and cervical cancer than any other racial or ethnic group.

African American men have the highest incidence and death rates for prostate, lung/bronchus and colon/rectal cancer.

Migraine Headaches
Nearly 24 million Americans suffer from severe migraines. Almost half of those individuals suffer moderate-to-severe pain disability, sometimes for days. Moreover, four-and-one-half million people suffer from debilitating migraines one or more times a month.

In a Danish study based on International Headache Society (IHS)²⁶ criteria researchers found that women are three times more likely to experience migraines than men. A higher prevalence of migraines during menopause suggests hormonal influence. Other factors contributing to migraines include stress, smoking, fatigue and certain foods.

Only half of the people suffering from migraines actually know their headaches are migraines; the other half are misdiagnosed or not receiving any treatment at all.²⁷ Typically, people who have been diagnosed with migraine headaches have struggled through a long line of doctors before receiving a correct diagnosis and proper pain treatment. While there is no cure for migraines, many advances have been made in understanding the origin of migraines, including exacerbating and relieving factors, and pain medications are more effective than ever before.

Pelvic Pain
Two major causes of chronic pelvic pain in women are endometriosis and adhesions. In the U.S. five million women are affected by endometriosis, a condition resulting from abnormal growth of uterine lining tissue outside the uterus.²⁸ Pelvic pain caused by adhesions is the result of excess scar tissue formation following common gynecological surgeries. New treatments are available that can stop the repeated cycles of pain, and physicians now have tools that can be used to reduce the risk of adhesions occurring after surgery.

Sickle Cell Anemia
Approximately 72,000 people in the United States have sickle cell anemia. It is an inherited disease that primarily affects African Americans and Hispanics. People with sickle cell anemia generally suffer recurrent pain episodes involving the back, chest, abdomen, extremities and head, with attacks more common in adolescence and early adulthood. For mild to moderate pain, NSAIDs are generally prescribed; for moderate to severe pain, much stronger analgesics are needed. Non-pharmacological strategies have also proven helpful in easing the pain of sickle cell anemia. These include gentle exercises, hot/cold treatments and cognitive/behavioral therapies.

HIV/AIDS
In 2002, African Americans and Hispanics accounted for 62% of all people living with HIV/AIDS in the United States. Pain is a common problem with HIV/AIDS, and becomes more of a problem as the disease progresses. Under treatment of AIDS pain is commonly attributed to a combination of physician barriers: fear of substance abuse, and difficulty assessing pain source; and patient barri­ers: fear of addiction, side effects, painful injections.

Diabetes
Diabetes affects an estimated 20 million Americans, with Caucasians the least affected. American Indians and Alaska Natives are 2.3 times more likely to be diagnosed with diabetes, African Americans are 1.6 times more likely, and Hispanics are 1.5 times more likely.

One complication of diabetes is impaired circulation in the hands and feet, which can lead to nerve damage and pain. New research indicates that this pain can be successfully treated with a patch containing the local anesthetic lidocaine.

Key Considerations in Treating Pain in Women
Women in the U.S. have long struggled with destructive biases held by the medical community. All too often, their reports of pain are dismissed as emotional, psychogenic or “all in her head.” Not real, in other words. Gender bias is more clearly seen in the medications prescribed to treat the same type of pain in men and women. Women are often prescribed sedatives to calm their nerves; men are prescribed painkillers.

There is a condition described in the primary diagnostic manual of psychological disorders that lists as its symptoms pelvic pain, painful intercourse, and menstrual irregularities, all of which have compelling similarities to symptoms of female pelvic disorders, including endometriosis. While these symptoms should trigger medical investigation of possible organic disease, they remain listed as primary markers of a psychological disorder i.e., a syndrome invented by a woman to deal with the minor stresses of her life.

Unfortunately, many stigmas associated with a woman's pain complaints remain. An Asian woman who suffered severe pelvic pain and breast cancer before being properly diagnosed described her experience as follows:

After years of suffering from dysmenorrhea and a coccyx trauma, I began to experience sharp, stabbing pelvic pains that did not seem to be associated with my menstrual cycle. I began to see a gynecologist. After the first three successive visits, the gynecologist prescribed pain medications. At the fourth visit, the gynecologist conducted no examination but stated that I had an ulterior motive for being in pain, since “there was no medical reason for the pain.”

Over the subsequent 18 months, I had 4 or 5 more appointments with the same gynecologist, who continued to state that there was nothing wrong. Then, after a pelvic/coccyx pain episode at work which caused me to collapse to the floor, I was examined by the Department OB/GYN chair at UCSF. This examination revealed that I had a “cyst the size of a grapefruit on my right ovary.”

Then in 1991, I discovered a breast lump. After a negative mammogram, a surgical oncologist informed me: “You’re too young to have breast cancer, you have no family history of cancer, and besides, Asian women don’t get breast cancer.” Not feeling reassured, I sought out a second opinion. The second doctor also stated that I “definitely did not have breast cancer.” However, both doctors were incorrect.

After I finished my first primary treatment for breast cancer, someone asked me what was the most difficult thing about having breast cancer. My immediate response was dealing with the medical system. From doctors and nurses too easily dismissing my breast lump because they all believed that breast cancer doesn't hurt to the surgeon who outright refused to perform a biopsy because he felt I was too young to have breast cancer, having no family history of cancer and because Asian women do not get breast cancer to the medical oncologist who made an entry in my chart that I was “hysterical and in need of psychiatric counseling.”

Because of my background, where I was taught to suffer pain in silence, I did not do a good job of advocating for myself. However, once my self-imposed barrier was eliminated, I became a very educated and informed medical advocate.²⁹

Are women the weaker sex that cannot take as much pain as a man? Or are they the stoic sex that suffers more and complains less? Many studies indicate that women have lower thresholds to pain than men do and greater sensitivity to certain pain problems like migraines and arthritis. On the other hand, there are studies indicating that health care professionals believe women can manage more pain than men. Does a perceived superiority of women to cope with pain affect the care they receive? There are no clear-cut answers.

Sports provide another insight into gender and pain. Athletes typically experience pain as part of training or competition, or as the result of a sports-related injury. Studies of pain in athletes found that both men and women athletes have a higher tolerance for pain than non-athletes, and male athletes tolerate more pain than female athletes. The ability for athletes to withstand more pain may be a learned behavior, particularly given the “no pain, no gain” mentality so common in the sports world.

Biological explanations for gender differences refer to a woman’s heightened sensitivity due to menstrual or pregnancy hormonal changes. Machismo, too, may be a factor in the perception of pain differences. Studies show that during interviews to assess pain, men report less pain to a female interviewer than to a male interviewer, and are more reluctant to reveal they are getting health care.³⁰ Cultural variables are also involved, with ethnic gender role expectations influencing pain coping styles. In a study of Puerto Rican men and women with severe chronic pain, men were less successful in coping with pain than the women. Loss of self-esteem and depression resulting from inability to work or be physically active made it more difficult for the Puerto Rican men to cope with the same level of pain as the women.

The experience of pain is unique to every individual. One cannot say categorically that women always experience more pain than men. However, studies suggest that women are typically more responsive to pain. This increased responsiveness appears to be influenced by both body chemistry (hormones) and societal expectations.³¹ And yet, women are commonly under treated for pain compared to men. The critical question is; what can be done to fix it? Clinicians assessing and treating pain in women should not be governed by societal or cultural precepts about who feels more or less pain, or who shows more or less emotion. Instead, they should ask women about their level of discomfort, trust what they tell them, and act accordingly.

Patient education is also critical in ending gender and ethnic bias. The individual has to become his/her own advocate in demanding proper medical attention. The “Women in Pain Bill of Rights” included here was written for a non-profit organization called “For Grace.” ³² The organization is committed to raising public awareness of Reflex Sympathetic Dystrophy (RSD), a chronic pain disease that affects women three times more often than it affects men.

Key Considerations in Treating Pain in Minorities

There is a preponderance of medical literature describing the under treatment of pain (particularly cancer pain) in minorities. While socioeconomic factors contribute to this problem, issues of racial and ethnic differences cannot be ignored in terms of their impact on pain assessment and effective treatment.

Accurate appraisal of pain and appropriate pain interventions may be more difficult for patients who are not of the same gender or ethnic background as the treating physicians. We tend to make assumptions about people from distinct cultures and how they typically express pain:

• Asians are more subdued, quiet and stoic
• Hispanics/Italians are more likely to display highly emotional responses to pain

These assumptions can color the interpretation of a patient’s pain, and generally lead to an underestimation of pain severity.

The meaning and expression of pain are influenced by the patient’s cultural background. Viewing the patient within the framework of his/her particular culture is helpful in terms of understanding emotional, behavioral and linguistic clues to pain expression. However, it is dangerous to apply cultural paradigms too broadly, as not everyone in every culture conforms to a set of expected behaviors or beliefs.

Language barriers not only make it difficult for a physician to get an accurate read on a patient’s pain, but also make it challenging to establish the kind of long-term relationships that promote good communication and a more personalized understanding of patient pain relief requirements. Studies have shown that poor pain relief often occurs when patients are passive in their relationship with health professionals.

The 2001 Kaiser Women’s Health Survey, involving a nationally representative survey of nearly 4,000 women between the ages of 18 and 64, found that perception of quality medical treatment was influenced by the level of communication with primary care physicians. Hispanic women were more likely than other minority women to feel that their doctors did not take time to answer all of their questions, and that they often left the doctor’s office without understanding all of the information they received.³³

In a study of 31 minority outpatients with cancer,³⁴ of whom 17 were Hispanic and 14 were African American, 75% of them reported they experienced severe pain. The researchers concluded that poor communication was a key reason for their ongoing experience of pain, despite the fact that they had been prescribed appropriate doses of opioid analgesics for their pain. Digging further, they found that most of the patients in the study

• Did not understand the best way to use the medications (i.e., they didn’t realize the importance of staying “on the clock” to avoid periods of pain between medication).
• Had not been warned of possible side effects (constipation, nausea) and how to control them.

African-American and Hispanic cancer patients do discuss their pain with their physicians. However, the majority of African American patients and more than one-third of Hispanic patients indicate that they have to bring up the issue of pain management themselves.

Understanding how patients of different racial or ethnic origin cope with pain can also assist physicians in creating more personalized and comfortable relationships that foster trust and better communication. For example, religion and faith are important ways in which Hispanic patients cope with cancer and pain.

Good communication, while certainly a challenge in a culturally diverse practice setting, is probably the single-most important strategy for overcoming racial and ethnic pain treatment disparities.

Clinicians can go a long way toward closing the gap in quality of care for minority patients by

• Educating themselves on their patients' cultural backgrounds, pain attitudes, and coping styles.
• Using pain assessment measures that take into account cultural and linguistic differences in patient populations.
• Encouraging patients to talk about pain-ask patients what they call their pain (do they have a name for it?) and what they fear most about it.
• Explaining the best way to use medications.
• Educating patients on possible side effects and how to control them.
• Asking patients to use a “PAIN CONTROL RECORD” to monitor how well medication is working.

Included as Appendix I is a copy of a pain diary based on the National Cancer Institute “PAIN CONTROL RECORD.” The diary can be removed and reproduced for distribution to patients.

Summary
The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) Pain Management Standards specifically state that in the planning and coordination of pain management activities, health care organizations must “ensure consideration of personal, cultural, spiritual, and ethical beliefs in the treatment plan.”

Any barriers to achieving this goal, including ethnic and gender stereotyping and inattention to cultural variables, should be addressed and corrected in all practice settings. Clinicians must recognize that not all patients are alike, that pain does not have the same meaning and significance for different patients, and patients may exhibit different coping strategies and different responses to pain and treatments. Successful treatment of multi-ethnic and gender­differentiated chronic pain sufferers will require the ability to discover the unique illness reality of each patient. Gauging pain in this way will enable physicians to provide more personal and quality pain care to all patients.

In September 2004, a consensus report entitled “Managing Pain: The Challenge in Underserved Populations: Appropriate Use versus Abuse” was published in the Journal of the National Medical Association (NMA).³⁵ The NMA, founded in 1895, is the United States’ largest national organization representing African-American physicians and health professionals. As part of its mission, it is committed to improving care for minority and disadvantaged people. Racial and ethnic minorities often suffer under treated or untreated pain because of stereotyping. In order to help end this practice, the NMA issued policy recommendations for the safe and effective management of pain. Included as Appendix J is a copy of these recommendations.

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