Soc. Sci. Med. Vol. 45, No. 9, pp. 1433 1447, 1997
,~" 1997 ElsevierScienceLtd. All rights reserved Printed in Great Britain 0277-9536/97 $17.00 + 0.00
THE EFFECTS OF THE C U L T U R A L C O N T E X T OF H E A L T H CARE O N T R E A T M E N T OF A N D RESPONSE TO CHRONIC PAIN A N D ILLNESS M A R Y A N N S. BATES,'~o L E S L E Y R A N K I N - H I L L 2. and M E L B A S A N C H E Z AYENDEZ 3 ~Division of Human Development, School of Education & Human Development, State University of New York at Binghamton, Binghamton, NY 13902-6000, U.S.A., -~Department of Anthropology, University of Oklahoma, Norman, OK 73019, U.S.A. and 3Department of Gerontology, Graduate School of Public Health, University of Puerto Rico, Medical Sciences Campus, San Juan, PR 00936, Mexico Abstract--Qualitative data from two studies in Puerto Rico and New England are used to show how cultural values, standards and beliefs in different health care contexts affect (1) health care professionals' responses to patients' problems, (2) the relationships between providers and patients, and (3) the patients' responses to chronic pain and illness. Influencing elements in the care setting include the world view of the relationship of mind and body in illness processes, the dominant values and standards regarding pain and illness behaviors and the degree of cooperation between the providers and other agencies the patient depends on for compensation, rehabilitation and health insurance. In the New England study, the biomedical world view of mind-body dualism was shared by providers and most patients, but this shared belief often contributed to substantial patient stress and alienation. In contrast, in the Puerto Rican study providers and patients often shared a view of mind body integration in illness and valued treatments which addressed chronic pain as a biopsychosocial experience. In this setting, shared views and values contributed to more supportive patient-provider relationships, and patients thus experienced less treatment-related stress. ~ 1997 Elsevier Science Ltd Key words--chronic pain, cultural context, ethnomedical systems, variation
failed to investigate if and/or how cultural beliefs, values, attitudes and standards of health care providers influence patients' abilities to cope. This article is based on two studies which investigated how the cultural backgrounds of patients and health care providers, the cultural context of medical care, disability compensation and rehabilitative services affect pain sufferers' perceptions of and response to their chronic pain, treatments and their abilities to cope with the pain experience.t
Kaufman's (Kaufman, 1988) study of adaptation in disabled stroke victims shows that cultural understandings of m i n d - b o d y processes and cultural expectations of outcome by health care providers and patients are important to patients' adjustment to disability. Stein (1990), Lock and G o r d o n (1988) and Payer (1988) have examined the cultural aspects of American biomedicine and H a h n and Gaines (1985) have examined practitioners of biomedicine from an anthropological perspective. Nonetheless, the majority of research into how people cope with and adjust to chronic pain and illness has thus far
THE STUDY SETTINGS
*Author for correspondence. tThe criteria used to define chronic pain and to select patients for these studies were based on guidelines set by the International Association for the Study of Pain (IASP) as suggested in the Classification of Chronic Pain (Merskey, 1986, 1979). The IASP defines chronic pain as pain lasting more than three months, persisting past the normal time of healing and/or failing to respond to the usual forms of biomedical intervention (Merskey, 1986, 1979). In the United States alone chronic pain affects between 50 and 80 million people (Aronoff, 1985; Holzman and Turk, 1986; Merskey, 1986), and the annual cost of chronic pain, in health care, drugs, disability compensation, lost wages, etc. exceeds $50 billion (Bonica, 1985; Lipton, 1990).
The first study was conducted at an outpatient chronic pain control center at a New England (N,E.), U.S.A. medical center during 1987 and 1988. The second was a study of chronic pain patients at an outpatient medical center near San Juan, Puerto Rico conducted during the summer months from 1990 through 1993. Despite the fact that both sites are biomedical settings, cultural differences between the two were clearly evident and affected the doctor/patient relationship, patients' care and treatment, and patient responses to their pain, illness and treatments. The sociodemographic characteristics of four groups to be compared in this paper have been presented elsewhere (Bates and Edwards, 1992; Bates
Maryann S. Bates et al.
et al., 1994; Bates and Rankin-Hill, 1994). In all four groups, the most common diagnoses were low back pain, arthritis or neuropathies. The four groups were similar in current medication types being taken for pain and in types of past pain treatments (see Bates and Edwards, 1993; Bates et al., 1994 for details). Our major objective was to compare the four groups to determine if there were inter-ethnic group differences in reported chronic pain intensity, behavioral, psychological and attitudinal responses, and overall level of coping. We have presented the quantitative methodology and analyses elsewhere which showed statistically significant inter-ethnic and intra-ethnic group differences in reported pain intensity and in numerous pain response areas (Bates and Edwards, 1992; Bates et al., 1994,; Bates and Rankin-Hill, 1994). In this paper we present the qualitative data and analyses, with a special focus on how the cultural context of health care and rehabilitation affects subjects' responses to treatment and their abilities to cope effectively with the chronic pain and illness. Three groups from the New England study are represented by five case studies in this qualitative analysis: (1) a group of Anglo-Americans (n = 100), who are at least third generation U.S.born Caucasians and defined themselves as Americans; many offered a secondary identification of "Yankee" or "New Englander"; (2) a group of Latinos (n = 44), 35 of the 44 were born outside the U.S. mainland, 34 in Puerto Rico and 1 in Costa Rica. The majority of the Latino group (33 out of 44) do not speak English fluently; (3) a group of Polish Americans, the majority (21 of 28) are first or second generation U.S.-born and many speak both English and Polish. A comparative group from the second study of native Puerto Ricans is represented by two case studies. All subjects (n = 100) were born in Puerto Rico and identified Spanish as their primary language; approximately one third also speak English as a second language as adults. Since Puerto Rico is a U.S. commonwealth, all Puerto Ricans are U.S. citizens. However, every Puerto Rican participant self-identified as Puerto Rican, with some patients mentioning "American" as a secondary ethnic identity. Other studies also indicate that Puerto Ricans prefer to identify themselves as Puerto Rican rather than American (Sanchez-Ayendez, 1984, 1988; Zayas and Palleja, 1988; Rodriguez, 1991). As a Commonwealth of the United States, Puerto Rico has some degree of self government and can elect their own Island officials. In addition, as American citizens they have the right to unrestricted migration to the mainland. The population of Puerto Rico was approximately 3.3 million in 1987 (Departamento de Salud, 1989; Canino and Canino, 1993). At that time, over
2.5 million Puerto Ricans resided on the U.S. mainland (Canino and Canino, 1993, p. 471). "Most Puerto Ricans who migrate to the United States (mainland) do so for economic reasons" (Reyes and Inclan, 1991, p. 1). Since the late 1940 s, there has been rapid development of the Island's tourist industry and industrialization of the Island associated with "Operation Bootstrap," which included tax incentives to attract U.S. industries to the Island (Rodriguez, 1991, pp. 11-12). Nonetheless, the current rate of unemployment on the Island is quite high, 14.4% in 1989 (Departamento de Trabajo, 1989). Although there has been a degree of Americanization on the Island, despite over 90 years of American rule, Puerto Rico remains distinctive culturally (Zayas and Palleja, 1988, p. 260) and a clear preference for the Spanish language and Spanish as the language of instruction in the public schools remain important symbols of Puerto Rican identity (Rodriguez, 1991). Our research suggests that although the biomedical system on the Island is similar to mainland medical practice in many respects, it also retains a distinctive cultural flavor. The Island biomedical setting, for example, had different norms for patients' pain behaviors, a more personal doctor-patient relationship, and an integrated mind and body relationship world view rather than the prevalent mind-body dualism world view of the U.S. mainland. While acknowledging the existence of substantial diversity among Puerto Ricans, especially differences related to Island or mainland residence, place of birth, and socioeconomic status (Rodriguez, 1991; Morales Carrion, 1983; Robles et al., 1982; Szalay and Diaz-Guerrero, 1985; Duany, 1988; Rogler et al., 1991; Schensul et al., 1982; Canino and Canino, 1980; Harwood, 1977), the literature has identified certain cultural values common to many Puerto Ricans. These widely shared values include: "personalismo... the need to relate to people and not to institutions" (Canino and Canino, 1993, p. 480); allocentrism or collectivism where the needs, values, and goals of the group are emphasized over that of the individual (Marin and Triandis, 1985); and "familismo" (or familialism), a strong identification with and attachment to nuclear and extended families. Therefore, familismo places a high value on giving and receiving family support; stress on family interdependence, loyalty, reciprocity and solidarity; and the continuation of strong parental control over offspring (Sanchez-Ayendez, 1988; Canino and Canino, 1993; Bastida, 1979; Canino et al., 1987; Marin and VanOss Marin, 1991). Although, daily support of elderly family members may vary due to migration of adult children to the mainland, our research suggests that other extended family members provide support in the absence of daughters and sons (SanchezAyendez, 1993).
Cultural context effects on chronic pain and illness The retention of a high value on traditional Puerto Rican gender roles (with some variation from such roles related to socioeconomic class and long-term stays on the mainland or being born and raised on the mainland) also has been noted in the literature (Sanchez-Ayendez, 1988; Canino and Canino, 1993). These traditional gender roles have been discussed in association with machismo, which involves a belief that the male is traditionally responsible for the welfare and honor of the family, responsible for being the main provider and protector of his family (Sanchez-Ayendez, 1988; Canino and Canino, 1993; Ramirez, 1992); and marianismo, which involves a belief that "women are spiritually superior to men and, therefore, are capable of enduring suffering better than are men" (Canino and Canino, 1993, p. 481). Considerable anthropological and social scientific research on Puerto Ricans on the Island and the mainland has been conducted by Puerto Rican social scientists and others (Canino et al., 1987; Ramirez, 1992; Steward et al., 1956; Mintz, 1975; Buitrago-Ortiz et al., 1981; Seda-Bonilla, 1964, 1970; Buitrago, 1966, 1970; Lauria, 1964; Ramirez, 1973; Burgos and Diaz Perez, 1986; Koss-Chioino, 1992; Koss, 1980, 1987; Canino et al., 1990; Guarnaccia, 1993). These works address issues of social and cultural change in Puerto Rico, the existence and nature of Puerto Rican national identity, political and economic issues related to Puerto Rico's geopolitical status, gender issues, and mental health issues. Although there has been considerable research on mental health issues among Puerto Ricans on the Island, including studies of traditional Puerto Rican healers in mental health care (Canino et al., 1987; Koss-Chioino, 1992; Koss, 1980, 1987; Canino et al., 1990; Guarnaccia, 1993), to our knowledge, few if any studies in Puerto Rico have focused on adaptation to chronic disabling diseases of a physical nature and, prior to the research described here, none have focused on chronic pain among Island Puerto Ricans.
QUALITATIVEMETHODS In addition to quantitative data collection and analyses, we conducted numerous formal and informal interviews with many of the patients at both study sites in which we asked open-ended questions. We also selected six patients in each of the ethnic groups from whom we gathered intensive case study materials. Case study patients were selected to represent the age range, gender, diagnoses, pain duration and range of coping styles in each ethnic group. These patients were interviewed on several occasions in addition to the initial interview which elicited the baseline quantitative information. The intensive case study interviews with all New
England patients were conducted at the N.E. pain center. In addition to the formal interviews, many N.E. pain center case study patients came in for weekly treatments that lasted one to three hours, which enabled us to visit with and/or observe many of them on a regular basis. The majority of case study patients in New England preferred that interviews not be tape recorded, so notes were taken during the interviews and field notes were recorded at the completion of each interview or informal encounter. In Puerto Rico, patients were seen initially at the medical center and follow-up interviews for case studies were conducted either at the center or in patients' homes. We interviewed and visited with each of these case study patients during at least two summer research periods. All P.R. formal case study interviews were tape recorded with the participants' permission and later transcribed. Content analyses of notes and transcripts involved the search for and coding of consistent themes and key words or phrases. At both sites, health care providers were also observed during interactions with patients, during staff meetings, and in several cases, formally interviewed; field notes were recorded on these observations and interviews. In keeping with the biocultural orientation used in both studies, and as suggested by Armelagos et al. (1992), we conceptualized and analyzed the biomedical health care systems at our two study sites as ethnomedical systems. Using qualitative methods, we attempted to define social relations in, and cultural, political and economic components of the medical systems at the two sites. We also identified the available resources, and the constraints these resource systems placed on those individuals who sought care.
THE CULTURALCONTEXTOF HEALTHCAREAT THE TWO STUDYSITES A qualitative comparison of the chronic pain experiences of Anglo-Americans, N.E. Latinos, Polish Americans, and Island Puerto Ricans illustrated several clear differences in the context of health care between the Puerto Rican medical center and the New England center. There were several distinct cultural factors that affected both the type and quality of health care provided and the perceptions and responses of patients. Cultural factors included: the language barrier for Spanish speaking patients at the NE center; cultural differences in the expression of pain; differing mind-body world views; health providerpatient relationships; and, views concerning pain responsibility. The case studies which are presented serve to illustrate these cultural differences.
Maryann S. Bates et al.
Language barrier and linguistic expression of pain The language barrier. One factor affecting the N.E. Latinos' responses to the chronic pain experience was the language barrier they confronted in the mainland community where they lived and the corresponding medical setting. Since there were no interpreters available at the N.E. pain center, N.E. Latinos who did not speak English often brought an 8-10 year old child or grandchild with them as translators. This often led to problems due to patient-provider miscommunications. Initial psychological assessment instruments were only available in English, so that only those Latino patients who could read English received the basic assessment as did the other N.E, pain center patients. Therefore, non-English speaking Latino patients did not receive the full range of services of psychological and occupational therapies. These health care limitations due to the language barrier partially account for the anger and frustration often expressed by these N.E. Latino patients. When we discussed this situation with the director of the N.E. pain center, he expressed considerable concern, but state and institutional budgetary restrictions prohibited him from hiring a translator or bilingual health professionals for the Latino patients. The case of Yolanda, a Puerto Rican immigrant to the mainland, illustrates both the problems with lack of Spanish assessment materials and a N.E. Latino trend toward expressiveness of pain. (Fictitious names are used in all but one case study to protect patient confidentiality.) In her mid-30 s, Yolanda had one year of nurse's aide education beyond high school and worked as a nurse's aide at a New England nursing home before her pain began. Yolanda injured her back in an accident while on duty at the nursing home; however, her workers' compensation claim was denied. Thus, she received no wage replacement or health care benefits from workers' compensation. She did not have sufficient funds to hire a lawyer to represent her in a state workers' compensation board or court appeal of the decision and did not know how to appeal the case on her own. Yolanda's case was not unique. Many patients from all ethnic groups reported problems with the workers' compensation system. However, Yolanda's unfamiliarity with the U.S. system, her limited English language skills and lack *A transcutaneous electrical nerve stimulator (TENS unit) is "a method of pain control by the application of electric impulses to the nerve endings. This is done through electrodes that are placed on the skin and attached to a stimulator by flexible wires. The electric impulses generated are similar to those of the body, but different enough to block transmission of pain signals to the brain" (Glanze, 1986, p. 1144).
of funds contributed to her failure to obtain workers' compensation benefits. According to her physicians, Yolanda suffered from mechanical and radicular low back pain, with some evidence of degenerative joint disease of the spine. She had been in chronic pain for six months when we first interviewed her, had not had any back surgeries and took anti- inflammatories and anti-depressants for her pain. Despite the medications, the pain made it difficult for her to do her housework, to walk for any distance and to sit for long periods. She had not been able to return to her job and reported high interference with her normal daily work of household chores and child care. She reported moaning and groaning and crying frequently in response to her pain. Yolanda used a transcutaneous electrical nerve stimulator (TENS) unit* for pain relief but did not like to do so. She said, "I feel like my life is being run by a machine--at times I feel like a robot. I get very depressed because of the pain but there is not much I could do to avoid the pain from coming back." She reported that the pain had affected her social life with old friends. Whereas she was very active before the pain, she could no longer help her friends and relatives. She said, "I used to do so much for others and now I can't. This gets me very depressed and sad." Yolanda appeared to be more stressed about her failure to fulfill social roles than about having to cease employment. Yolanda expressed anger that no one had been able to really help her get rid of the pain and she not only blamed the nursing home for her injury, but for not providing her with workers' compensation benefits after the accident. The N.E. pain center neither assisted Yolanda in trying to obtain workers' compensation benefits from her former employer, nor did they treat her depression. She was not fluent enough in English to take the psychological tests which are generally part of the N.E. pain center's admission packet and thus received neither psychological assessment nor treatments. Therefore, she received no help with her psychosocial needs; instead, the N.E. pain center staff focused on her biological symptoms, providing prescriptions for medications and the TENS unit. Indeed, Yolanda was more fortunate than most Latinos at the N.E. pain center, since she could speak enough English to communicate her condition to the physicians. Yolanda reported that she felt little or no control over the direction her life was taking and that the pain controlled her life most of the time. "I used to be a very active woman, now I always ache. I now live in Hell town". Yolanda's open expressions of pain intensity, depression, anger and frustration made her unpopular with the N.E. pain center nursing staff because she did not meet their cultural expectations for appropriate behavior. As a result, the N.E. pain
Cultural context effects on chronic pain and illness center was not a Yolanda.
supportive environment for
Cultural differences in standards for expressing pain On the Island of Puerto Rico, in contrast to New England, health care providers viewed expressing pain as appropriate and thus expressive patients in Puerto Rico met no discrimination or disapproval. We observed very different responses on the part of receptionists and health care providers to patients' expressiveness at the two study sites. At the P.R. medical center, and on two visits we made to a local hospital emergency room, staff in Puerto Rico tended to take expressive patients' complaints very seriously and to see outward expressions of pain as an indication that patients were in severe pain and in need of prompt treatment. In New England, expressive patients' complaints were more often seen by staff not as an indication of severe pain, but as a sign that the patient was "overly emotional". Given this perception on the part of N.E. staff, such patients were not given any special consideration for prompt treatment. Juan's experience demonstrates the problems expressive Latinos encountered at the N.E. pain center. Juan, in his mid-30s, is a native of Puerto Rico who came to the U.S. mainland in the late 1970s. He is married with three young children. Several other members of his extended family lived in the same neighborhood and he socialized and interacted with them regularly. Juan came to the mainland because he believed strongly in the American dream. On numerous occasions he told us, "In America you can be anything you want to be." He believed that his move from Puerto Rico to the mainland would eventually lead to prosperity and an improved standard of living for his family. Juan first injured his back in the early 1980s while at work as a laborer and had surgery involving the removal of a herniated disk. He was able to return to work for two years, during which time he was promoted to foreman. In 1984 he re-injured his back on the job and since then, chronic low back pain has prevented his return to work. Juan reported high interference with sleep, sports, social activities, walking and work. His diagnosis is postsurgical radicular low back pain, which is pain caused by inflammation of the spinal nerve roots, and he has not been considered a good candidate for repeat surgery. Since the summer of 1986 he has received regular intravenous Lidocaine treatments* at the N.E. pain center. Typical of the majority of Latinos at the N.E. pain center, Juan was very expressive about his *Information on the use of Lidocaine infusions in the treatment of certain types of chronic pain can be found in Edwards et al. (1985).
pain. He displayed pain behaviors, such as wincing, grimacing and groaning, more often than most of the non-Latino patients observed. This sometimes led to misunderstandings with the nurses at the treatment center, many of whom are AngloAmericans; their own cultural values probably contributed to their view of Juan's behavior as inappropriate-especially, they indicated, for a man. About Juan one nurse said, "He starts to yell when I apply the alcohol swab--even before I put in the needle (for the I.V.). He looks so macho but he acts like a baby." Clearly, different cultural beliefs about acceptable behavior have led to problems in the patient-nurse relationship at the N.E. pain center. Juan described his pain as very severe, said he was very depressed and defined himself as unhealthy and disabled. He said his pain controls his life and on numerous occasions stated: "I'm not the man I used to be." Although he has been receiving workers' compensation benefits, he is not happy with his situation, as he believes a "real man" must work. (His workers' compensation benefits are low and do not provide him with the resources to make a better life for himself and his family). Although he had received compensation benefits for almost four consecutive years, Juan continued to refuse the repeated and persistent offers of a settlement by workers' compensation, believing that he will eventually be able to return to his job. The compensation insurer wanted Juan to accept a permanent cash settlement so he would no longer receive weekly benefits, apparently corroborating the widely held opinion that the goal of the workers' compensation system is to settle long-term disability cases as cheaply and quickly as possible. The workers' compensation system made no effort to retrain Juan for a new position. Even though he was fluent in English, the N.E. pain center's "occupational therapy" program offered no real assistance with his job concerns. Occupational therapy, as practiced at the N,E. pain center at the time of the study, involved teaching patients skills of daily home life, often with the use of some mechanical device or brace (which often were sold to them by the medical center). The effect of disability on his self-image was one of the most striking features of Juan's pain response. For Juan and other Latino men at the N.E. pain center, pain and the accompanying inability to work symbolize a loss of manhood and self-esteem, an understandable response given Puerto Rican gender role expectations. Among Puerto Ricans on the Island and on the mainland, the definition of maleness alludes to a man's ability to be self sufficient and a good family provider and protector. Thus the failure of the workers' compensation system and the occupational therapy program at the N.E. medical center to assist Juan with retraining had a devastating effect on him, both financially and emotionally.
Maryann S. Bates et
As Juan's case demonstrates, within multi-ethnic or multicultural health care environments, providers need to be able to interpret patients' behaviors contextually rather than based on American biomedical standards and/or providers' own culturally specific values. The utilization of patients' interviews and psychometric instruments, and the subsequent information that can be elicited in terms of norms, patterns, and ranges of variation within the particular ethnic or cultural group, would provide a basis for improved health care assessment and delivery to multi-ethnic pain patient populations. In contrast to Juan's experience at the N.E. pain center where divergent cultural standards for expression of pain led to his problems with providers, two case studies from the Polish American group demonstrate that shared values concerning pain expression can contribute to more supportive provider-patient relationships. Carl, a second generation Polish American, is in his early 30s. He reported strong ties to the local Polish American community and to his extended family. Carl has an associate's degree and worked as a professional before his accident. He said his medical problems have not adversely affected his marriage, but he did report difficulty with sexual performance due to his pain. Carl's neck pain, radicular low back with associated leg pain, and migraine headaches all began after he was in a motorcycle accident in 1985. At that time he underwent back surgery for a herniated disk. Before coming to the N.E. pain center he had been seen for his accident-related problems by a variety of doctors including neurologists, neurosurgeons, a chiropractor, an osteopath and a psychologist. At the N.E. pain center, he was prescribed anti-inflammatories, opiate analgesics and, also, methadone in an attempt to lessen his use of opiates. Carl has been unable to work due to his injuries, has been receiving Social Security Disability Insurance (SSDI) benefits and is in the process of litigation concerning the accident (in his view, the driver of the car with which he collided was at fault). Carl also reported severe interference in social activities, household chores, sports, and sleep. His overall pain intensity score on the McGill Pain Questionnaire,* a standardized instrument for measuring pain intensity, was one of the highest scores in the Polish group. However, despite his high pain intensity score, Carl was very non-expressive about his pain; he said he does not like to talk about the pain with others. He never displayed any *Melzack and Torgenson (1971), Melzack (1975, 1984), Elton et al. (1979) Turk et aL (1985), Fotopoulos et al. (1979), Prieto et al. (1980), Lahuerta et al. (1982), and Molina et al. (1984) provide details on the validity testing and use of the McGiU Pain Questionnaire in Spanish and English.
pain behavior in our presence--this was common among the Polish who tended to be non-expressive verbally and behaviorally. Carl reported that, in his estimation, he is coping quite well with his pain and disability. He said two of his major coping strategies have been to ignore the pain and to hide it from others. Another major strategy he has employed has been to return to school to study a craft in which he could engage despite his pain. His studies keep him busy, he enjoys them and he is preparing for a new career. Thus Carl's coping strategies have allowed him to live a life he defined as worthwhile and he defined himself as "healthy, but the pain has slowed me down." Carl was very pleased to be on Methadone because he has wanted to discontinue all opiate medications as soon as possible, although as yet he was unable to stand the pain without the Methadone and the increasingly smaller doses of opiates. It was clearly important to Carl to be viewed by others as healthy and normal and he stressed numerous times his ability to hide his pain from others. He said, "I'm an expert at it (hiding the pain)." Repeatedly emphasizing his ability to overcome his pain and medical problems, Carl said he was not depressed and his psychological evaluation by the N.E. pain center psychologist concurred. Overall, Carl appeared to be employing coping mechanisms which were useful to him. Of course, were he to be ultimately unsuccessful in discontinuing opiate medications, his use of the drugs as a coping strategy might be a long-term disadvantage and maladaptive in the long run. Wilma, a first generation Polish American, was in her mid-70s. Despite their age difference, Wilma's responses to pain and illness were very similar to Carl's. Wilma suffered from chronic neck pain, chronic myofascial syndrome and recurrent occipital neuralgia--all of which she said began when she was in an auto accident in 1986. Wilma's parents were both born in Poland and Polish was the language spoken in her childhood home. As an adult, Wilma is fluent in both English and in Polish. Married, with six adult children, she reported strong ties to them, her grandchildren, her sibling and to the local Polish community. Retired since 1983 from a semiskilled factory job, Wilma has enjoyed walking, reading and crocheting. However, she reported that her pain has caused severe interference with sleep, social activities, driving, walking and sexual relations. When she first came to the N.E. pain center, Wilma had a high pain intensity score--in fact, the highest score within the Polish group. Like Carl, despite her high pain intensity, Wilma reported no depression. She also said she considered herself generally healthy in a slight disability only in regard to driving and heavy lifting. Despite the
Cultural context effects on chronic pain and illness interference of pain with her daily activities, Wilma believed she was getting better and reported that her close family members have been very helpful and supportive. She said, however, that since she does not like to discuss her pain, many of her friends do not even know she has had pain and medical problems. She said that when the pain is bad, she stays at home and does not communicate with her friends. She displayed no pain behavior at any time during the interviews. Pending litigation against the other driver involved in her accident worried Wilma, and the uncertainty of its outcome was constantly on her mind. When we saw her, the case had already been in process for almost two years and was not likely to be resolved for at least another year or two, a time frame that appeared to be very common among patients involved in such cases. The lengthy litigation process, due to delays in hearing cases in the state court system, often contributed to substantial stress in the lives of the chronic pain patients at the N.E. pain center. Wilma reported that prior to coming to the N.E. pain center, she worried a great deal that she had a brain tumor and that the pain would never decrease. She reported, however, that treatment at the N.E. pain center (which included prescription anti-inflammatories, trigger point injections and physical therapy) provided relief and that the N.E. pain center physician's explanation of her pain relieved her mind so that she no longer believed she had a brain tumor. As noted earlier, Carl's and Wilma's non-expressive approach to pain was shared by other Polish Americans (Bates et al., 1994). In contrast to the N.E. Latino patients, and in part because of shared values about appropriate pain behavior, the Polish patients often had good relationships with the N.E. pain center staff, viewing them (as did Wilma and Carl) as supportive and helpful. D(ffi'rences in medical setting world views on mindbody relationships A significant area of variation between the two biomedical sites involved differences in cultural views on the relationship between mind and body in health and illness. At the P.R. center, attention was given to the patient's disease, injury and physical symptoms, as well as to the patient's family and social relationships, economic and work situations and feelings. Indeed, P.R. providers and patients generally shared a holistic view of mind body integration and expressed an understanding that emotional, psychosocial and biological factors interact in the chronic pain experience. Patients gener*Koss-Chioino (1992) offers a discussion of Puerto Rican Spiritists (Espiritistas) and Spiritism. She also describes a collaboration project involving Puerto Rican mental health professionals, medical doctors and spiritists. SSM 45,9
ally accepted suggestions for psychological consultations or treatments without displaying anger. Angel and Guarnaccia also have argued that in traditional Puerto Rican culture "there is less of a separation of the psychological and physical senses of sell" (Angel and Guarnaccia, 1989, p. 234). In fact, several subjects reported the simultaneous use of spiritists (traditional healers),* with medical center staff appearing to support such dual use of traditional and biomedical health care resources. Probably as a result of this belief in mind-body integration, the Island Puerto Rican population accepted the doctor's inquiries about family relationships and the patients' feelings about the pain and disability as evidence of caring and concern for patients. Such inquiries about psychosocial aspects of the pain experience were not seen as indications that the doctor viewed the pain as exclusively stemming from psychological factors. In contrast, Anglo-American patients at the New England center considered physician's inquiries into psychosocial matters as evidence that the doctor thought the pain was due to psychological factors and "not real". This was an understandable patient interpretation since the majority of American physicians, including those at the N.E. center, are trained within the dominant biomedical world view of mind-body dualism. Although acknowledgments of mind-body interactions are increasingly cited in the biomedical literature, the inherent bias in the traditional culture of biomedicine creates contradictions between what providers say and what they do. The mind-body dichotomous world view is also part of the cultural background of many of the center's patients and thus affected their treatment choices and compliance. At the N.E. pain center, physicians, nurses and other providers verbally expressed their belief and commitment to a multidisciplinary, multicausal approach to understanding and treating chronic pain. However, many of their actions have conveyed a continued belief in mind--body dualism. In fact, there appeared to be a clear preference for using biomedical procedures such as nerve blocks, epidural steroid injections, or intravenous medications. Aware of this preference and also sharing a mind-body dualism world view, Anglo-American patients have been angered by suggestions that their pain might be related to psychological factors. As a result, Anglo patients have often resisted suggestions for psychological counseling which they interpreted to mean, "'Now the doctor thinks it's all in my head." Such a viewpoint is clear in this first AngloAmerican case study. Joe, a native New Englander who has suffered from post-surgical low back pain, was most recently diagnosed as having degenerative disk disease. In his late forties when interviewed in 1987 and 1988, he was a high school graduate, a
Maryann S, Bates et al.
skilled laborer, married with two teenage children. Joe had experienced back pain for more than four years and had been coming to the N.E. pain center for about nine months. Joe was not considered a candidate for repeat back surgery. He was receiving periodic epidural steroid injections and oral anti-inflammatory medications for his back problems but still reported significant levels of pain and associated depression and anger. After several months of no significant longterm improvement from physical therapy, he somewhat reluctantly participated in the N.E. pain center's stress reduction course. However, he refused to follow his N.E. pain center physician's most recent advice to see the N.E. pain center psychologist on a regular basis, explaining that "My pain is in my back, not in my head." Joe did not express his pain behaviorally--there was no wincing or groaning (a response shared by many Anglo-American participants). However, he was angry about the way his case had been handled by his workers' compensation insurer. Joe originally injured his back while working as a tradesman for a construction company. At that time, Joe had disk surgery and returned to work for 18 months following his surgical recovery. After the initial injury, Joe received medical and wage compensation benefits from workers' compensation. However, when he began experiencing back problems 18 months after his surgery, his workers' compensation insurer initially denied his claim, saying his current back problems were not attributable to his earlier on-the-job injury. Joe described how devastated he felt when he had to stop working the second time and workers' compensation denied his second claim. While appealing to the state workers' compensation board, a process which took almost two years, he had no income or health insurance. (As Joe's condition was not defined as a total and permanent disability, he was not eligible for Social Security Disability Insurance (SSDI) benefits. Unable to pay rent during that time, Joe lost his apartment and the family had to move in with Joe's parents who lived in the area. After several months, Joe's wife (previously a fulltime housewife and mother) found work as a waitress, although her income made the family ineligible for Medicaid and her job offered no health insurance. Despite the wife's income, it was two years before the family was able to secure housing when the workers' compensation board finally ruled in Joe's favor. During this two year appeals process, Joe became very fearful of engaging in any physical activity and, as he had no health insurance, he did not receive occupational therapy or rehabilitation services. He believed that workers' compensation agents rode through neighborhoods trying to find claimants engaging in physical tasks which would prove the workers did not deserve benefits. As a
result of the adversarial relationship between Joe and his workers' compensation insurer, his fears were very real and led to a very inactive and unhappy existence. Without that fearful two year period, he might have become involved in rehabilitative activities which potentially could have reduced some of his back pain and associated disability. At the end of the N.E. pain center study, Joe remained an unhappy man who reported substantial anger at the workers' compensation system which, in his view, trapped him in a system that provided little hope of real rehabilitation. Anglo-Americans' general acceptance of the biomedical world view of the body as a machine-like entity separate from the mind also has led to problems with providers when biomedical procedures have failed to bring desired results. Because many Anglo-Americans have accepted the legitimacy and effectiveness of biomedicine, if medical treatments have proved ineffective, members of this group often become extremely angry at individual providers unable to effectively repair the body and free it of pain. However, this anger has not, for the most part, led to abandoning biomedicine in general, but rather to continuing the quest for the one biomedical physician who would finally find and fix the mechanical problem the patient believed to be causing his or her pain. Therefore, the cultural differences in world views on mind-body relationships are significant in how health care providers diagnose chronic pain patients, assess and prescribe treatments, and conduct basic "business" interactions within the medical setting. In addition, the patients' world views on mind-body relationships also affect their responses to diagnoses, perception of and compliance with prescribed treatments/therapies and their basic interactions with providers. When provider and patient world views are not similar, especially within the context of chronic pain, then miscommunication, diminished quantity and quality of treatment, and an ongoing process of reduced quality of life for the patient is the ultimate outcome.
Cultural differences in the doctor-patient relationship Doctor-patient relationships was another area of cultural difference between the Island and N.E. pain centers. Doctor-patient relationships at the N.E. center were professional with some personal recognition of long-term patients, yet patients were not consistently treated by the same physician. Therefore, doctor-patient relationships were more formal and less personal than in the Puerto Rico center. On the Island, attention was given to the patient's family and social relationships and feelings concerning her/his pain and disease. In an interview, the P.R. center's chief physician stated that the best care he could provide to most chronic pain and chronic disease patients was to spend significant time with them and to listen, in an understand-
Cultural context effects on chronic pain and illness ing manner, as the patients express their concerns, fears, anger, and frustrations. He considers such time as well spent because it results in improving patients' abilities to cope with their conditions. Sonia, a Puerto Rican woman in her late 40s who has had a severe case of rheumatoid arthritis since 1963 (at 20 years old) demonstrates the value of a supportive doctor-patient relationship. Sonia told us that her faith in God, in her doctor at the center and her family, all help her cope with her pain and disability. Having seen the same center physician since 1969, they have developed a close and supportive relationship. Other staff members and several patients also are very fond of her and provide substantial psychosocial support and social contact. Sonia, a deeply religious woman, places her center physician on an equal footing with God as far as helping her cope with her disease and pain. One indication of the more personal doctor-patient relationship style in Puerto Rico was that the chief physician at the medical center and one of the center's secretaries often traveled to Sonia's home on weekends to visit with her. The doctor and secretaries told us they also made these visits to other house bound patients, not only to evaluate patients' medical conditions but also because such patients often became very lonely and depressed. These house bound patients expressed gratitude for these visits which they viewed as an indication that the doctor and staff truly cared about them. This practice strengthened the doctor-patient relationship to a significant degree and gave patients a strong sense of support. Sonia's family history includes both parents and a sister with osteoarthritis and a paternal grandmother with rheumatoid arthritis, from whom Sonia believes she inherited the disease. Severe stomach problems, including bleeding ulcers, are related to various anti-inflammatory medications she has taken for arthritis. She has taken opiates for relief when the pain is especially severe, has had occasional steroid injections into especially painful joints, and has taken various anti-ulcer medications. We first met in 1992. The staff who arranged the interview indicated that Sonia was unable to walk because her artificial hip joint had been removed three years earlier due to severe infection. Thus she was transported by ambulance, declining an offer for us to come to her. Sonia proved to be a surprise. She was a beautiful, well groomed woman who laughed often. Joking and laughing with the ambulance attendants as they brought her into the office, it was soon apparent that Sonia had a risqu6 sense of humor. Sonia's hands and feet appeared badly deformed from the arthritis. In addition, she has severe osteoporosis, for which she now gives herself prescribed calcium injections. This condition has precluded another hip replacement surgery but she continues to hope that she will be able to successfully undergo
the procedure again. Although mainly confined to a wheelchair, she walks within her home with the use of an elevated shoe and a walker. In early 1996 she received a battery operated wheelchair, giving her a new independence which she cherishes. With a high school education and several posthigh school secretarial and accounting courses, Sonia worked for 25 years at the same firm despite her severe case of rheumatoid arthritis. She first worked as a secretary and later the owner moved her into a receptionist position when her hands became too deformed to type--the firm did not want to lose her. In 1988, she fell in the shower, broke her hip and could no longer walk or work. Her former employer still values her highly and calls her often. Sonia lived alone and had a very active social life before she lost her ability to walk. Never married, she moved in with her parents after breaking her hip and still lives with them. She is also very close to her sisters, nieces and nephews. Sonia believes her family is one of the main reasons she still feels a sense of purpose and worth--she said, "They need me and come to me for emotional help. If they see me down, it demoralizes the family. So I know I am needed." Sonia reported experiencing severe depression following her initial fall and broken hip, and another severe depression and loss of faith in God when the infected artificial joint had to be removed. However, she gradually regained her faith. She saw a psychologist briefly during both of those episodes, but credits her sister, who insisted she must not lose her faith in God, with pulling her out of her depressions. Sonia now does not dwell on what she can no longer have or do, but instead focuses on the good things she does have in her life, including her family, her doctor at the center and many good friends. Sonia said a person has to "live with the life they are dealt" and that hers is a good one. She spends a great deal of time each day on the phone with friends and relatives. The phone has become her major form of social interaction since her mobility became very limited. In spite of the severe pain and disability, Sonia tries very hard to "dominate the pain." She said she will not give up, will keep going, and continue to try to enjoy life. Nevertheless, Sonia admits she has days when the pain is extremely severe. During these times, she usually withdraws into herself, preferring to be alone. On days when she is "in crisis" (this phrase was used by numerous Puerto Rican patients to describe their bad spells), she admits to often crying, moaning and groaning from pain. Sonia has received a small income from Social Security Disability Insurance (SSDI) but with many prescription medications and medical bills, she has substantial financial concerns. Sonia is one of the most optimistic patients we have interviewed. When asked to define her health status, she stated, "in
Maryann S. Bates et al.
between healthy and unhealthy. I need some help, so I guess I am somewhat disabled. But I am glad to be alive. There are many people in the world who are much worse off than I am." Overall, Sonia has one of the most severe cases of arthritis encountered in either study. By biomedical standards she is a very ill woman with severe disabilities. Yet, she exemplifies the findings of both N.E. and P.R. studies: type or severity of disease often has very little relationship to a patient's response to pain and illness, rather cultural and psychosocial circumstances and the cultural context of care appear to have a greater effect on participants' responses to pain and treatment. Health care providers as patient advocates and counselors
Long-term improvements in biopsychosocial conditions might have been brought about if N.E. physicians and staff had engaged in counseling patients about lifestyle and workplace changes to help patients coordinate long-range strategies for job retraining or rehabilitation (for example, N.E. patients such as Juan and Joe). Instead, the physicians attempted to attain the immediate, and certainly not unworthy, goal of pain relief using biological approaches such as nerve blocks or intravenous medications, which inevitably resulted in, at best, short-term improvements. Often within a week to a few weeks, severe pain returned and the biomedical procedure had to be repeated. Fordyce et al. (1985) and Tollison et al. (1989) have noted the tendency of traditional pain clinics to merely "treat the experience of pain and not the disability of pain" (Tollison et al., 1989, p. 1125). On numerous occasions patients were observed attempting to gain the assistance of N.E. pain center physicians' with workers' compensation or other disability claims. More often than not, physicians made it clear that they did not like to have to deal with such matters and did not appreciate the gatekeeping function assigned to them under the current compensation and disability systems. Often, claim forms left with attending physicians were not returned to the insurers. When repeated appeals by phone, or during regularly scheduled visits, failed to bring about results, some patients would sit for hours in the waiting room trying to get an opportunity to see a doctor personally in order to obtain compensation-related evaluations. As noted in Yolanda's case, N.E. providers did not offer assistance to patients who had been denied w o r k e r s ' compensation and other benefits to which they might have been entitled. Despite the statement in the N.E. pain center's literature that it operated as a multidisciplinary treatment facility, there often also appeared to be insufficient coordination between the various programs offered. Physicians worked at the N.E. pain center one to two days a week, therefore many
patients saw different physicians during repeat visits and had no single physician to evaluate, oversee and coordinate their treatment and services on a regular basis. The progress and treatments of specific patients were evaluated at a weekly staff meeting attended by members of the various programs and services. (We occasionally attended these meetings and took field notes.) Time often ran out before all of the week's cases could be discussed, and there was no established schedule for reevaluating each current patient on a regular basis. The exceptions were "problem patients" whose cases often were addressed at the weekly meetings because of providers' frustrations. Thus patient advocacy was sometimes insufficient, both within the N.E. pain center programs and with external agencies that patients relied on for financial and rehabilitative assistance. It must be acknowledged that institutional constraints on providers made intensive advocacy and counseling of patients extremely difficult at the N.E. pain center. During the research period, the medical center administration reduced the number of N.E. pain center physicians, and the number of nursing hours. Concomitantly, the N.E. pain center was required to increase patient load. These policies increased the workplace stress of the health care providers and obviously decreased the time which nurses and doctors could spend with individual patients. Under these circumstances, the failure to provide in-depth counseling to patients is understandable. Cultural, political and economic considerations also shaped the delivery of occupational therapy services at both settings. Many patients at both sites wanted to return to work, but often occupational therapy services did not actively help patients attain this goal. At the N.E. pain center, occupational therapy programs often prescribed and provided devices and appliances to increase ability to engage in tasks of daily living rather than preparation for them to return to the workforce. The occupational therapy focus mirrors the mechanistic world view of biomedicine and, from an economic perspective, providing pain relief devices is undoubtedly profitable to the institution. On the Island, occupational therapy programs appeared to be equally ineffective at helping patients return to work. However, at the Puerto Rican medical center, the chief physician did counsel patients on social and economic matters associated with their disabilities. He also functioned as a patient advocate by often writing appeals when patients' workers' compensation or SSDI benefits were denied; and, in some cases wrote the disability insurer requesting that the patient's former employer make accommodations for the person to return to work, at least part-time. (However, as the case of Jesus presented below demonstrates,
Cultural context effects on chronic pain and illness employers were often unwilling to make such accommodations.) One of the many native Puerto Ricans for whom the chief physician in the Puerto Rican center advocated was Jesus. Jesus is of middle class background, in his 40s, and suffers from back problems. He has a master's degree and prior to his pain problem had a successful professional career. His position required both office work and frequent travel. Jesus reported that he felt in control of his life before he developed severe post-surgical back pain and associated loss of function in some leg muscles following disk surgery approximately four years ago. He has since developed degenerative joint disease of the spine. Jesus' case is a strikingly similar to that of Juan (the Puerto Rican immigrant to the mainland discussed earlier), despite socioeconomic differences. Like Juan, Jesus wanted desperately to return to some type of work. However, he was caught in the trap of the private disability system. He and his doctor believed he could work in an office for about four hours per day. A full-time job requiring extensive travel was no longer possible for him. Jesus and his medical center doctor suggested to his disability benefits provider (the private insurance carrier for his old employer) that he work 20 hours per week at the office for his former employer. The employer refused, offering him his former position. Since the disability compensation was tied to his old job, Jesus' choices were to return to a job he was not physically able to undertake, or to give up his disability benefits through his former employer and try to find a new half-time position. Even if he were to find such a position, it would obviously not pay as well as the benefits based on his former fulltime salary and he would permanently lose the current benefits. Jesus, the sole support of his wife and four children, had the significant financial responsibilities of two children in college and a third child only a year away from entering college. With disability compensation as the major source for financing his children's higher education, he saw no choice but to remain on disability even though he felt worthless because he was not working. Jesus reported to his center physician and interviewers for this study that he was severely depressed due to professional and financial concerns and was therefore seeing a psychiatrist regularly (as prescribed by his P.R. center physician). He had become a deeply unhappy man who saw little purpose in life and defined himself as unhealthy and disabled. He believed that the pain and disability had ruined his life and taken away his control; he *Apparently, the Medical Sciences Campus of the University of Puerto Rico had been developing an outpatient chronic pain clinic which was not fully operational when we met with Jesus.
perceived the accompanying inability to work as a loss of his manhood. As a result of his depression, Jesus attempted suicide more than once; this was confirmed by his physician at the medical center who was deeply worried about him. During several interviews, including two home visits, Jesus expressed despair over his inability to work, to engage in sports with his teenage son, or to attend the boy's sports competitions. Despite having a very supportive wife, children he clearly adores, and a loving extended family, Jesus was unable to find any meaning and purpose in life as long as he continued to have pain. Desperately, Jesus continued to seek the care and advice of a host of medical and psychological specialists. Having read about chronic pain treatment centers, he wants to seek such services but no live-in treatment centers exist on the Island.* Although his physician (at the medical center) recommended Jesus seek care at an inpatient chronic pain treatment facility on the mainland and wrote an appeal to the disability insurance company, the insurer has refused to finance such treatment. Very upset by this decision, he said that unless he could attend a pain clinic or find a physician who could cure his pain and disability very soon, he would commit suicide. Given his severe depression, Jesus' desire to return to some type of work should not be ignored, as Dworkin et aL (1986) found that activity is especially important in the treatment of depressed chronic pain patients. However, similar to several N.E. pain center cases, the disability system, as well as an inflexible former employer, contribute to the problems Jesus faces. Even for professionals such as Jesus, with private disability insurance rather then workers' compensation and a physician who strongly advocated for him, the current system offers little help to those who want to return to work but need a restructured work environment or flexible work schedule to accommodate their pain and disability.
Differences in views on responsibility for pain That chronic pain patients must assume responsibility for their own pain and for changing pain behaviors is another cultural bias clearly evident in current mainland chronic pain treatments. Behavioral modification programs, including the N.E. center's stress reduction component, adamantly adhere to this approach. Acute pain patients, are generally not held responsible for the existence and elimination of their pain. It appears that chronic pain patients are held to a different standard because biomedicine has not found a clear way to alleviate chronic pain. In the behavioral and cognitive approaches to chronic pain management, the focus is not on reducing perceived pain intensity per se, but on patient
Maryann S. Bates et al.
resocialization. Both approaches are based on the patient assuming responsibility: in the behavioral approach, the patient must suppress behavioral and verbal expressions of pain intensity; while in the cognitive approach, the patient must redefine the pain as some other sensation, or focus attention on other things and ignore the sensation of pain through the process of distraction, The goals of the relearning or resocialization process are to eliminate "deviant behaviors", such as failing to meet social obligations and expressing pain verbally and behaviorally. This focus on individualism and self-responsibility of many current chronic pain treatment programs most probably emanates from the AngloAmerican cultural value placed on individual autonomy and the belief that individuals have the potential, through their own efforts, to be anything they want to be (see Tropman, 1989; Bellah et al., 1985 for expanded discussions of these cultural values and beliefs), Even in inpatient chronic pain programs, which often involve counseling family members as well as the patients, these approaches are insufficient due to the external forces which affect the experiences of chronic pain patients and their families. In contrast to the mainland, health care providers and family members on the Island functioned as patient advocates and supporters. This attitude is in keeping with Puerto Rican cultural values such as " f a m i l i s m o " (which includes a high value on giving and receiving family support and a stress on family interdependence and reciprocity) (Sanchez-Ayendez, 1988; Canino and Canino, 1993; Bastida, 1979; Canino et al., 1987; Marin and VanOss Marin, 1991) A related value, consistent with the Puerto Rican attitude that the individual is not totally responsible for the elevation of their pain, is that of allocentrism or collectivism where the needs, values, and goals of the group are emphasized over that of the individual (Marin and Triandis, 1985). Marin and Triandis note that "an important element of the difference between Anglos and Hispanics/Latin Americans seems to be the emphasis Latino Americans and Hispanics place on their reference group as contrasted with the individualism present among non-Hispanics" (p. 98), These values probably contribute to the attitude at the Puerto Rican health center that patients are not solely responsible for their pain and its control, and to the more supportive role played by health care providers on the Island. SUMMARY AND C O N C L U S I O N S
Recently education programs for nurses and physicians often include materials on ethnic variations in health and illness on the part of patients. Such education must stress that culture affects patients and providers. Health care providers (phys-
icians, specialists and nurses) should be cognizant that their own cultural backgrounds are comprised of their individual experiences and the norms, beliefs and practices intrinsic to their professional training; that the "culture of medicine" and their own cultural background affect their communications, perceptions and interactions with pain patients and, ultimately, the care and treatment they provide. At the New England pain center, there were instances in which several nurses were judgmental toward the expressive Latinos; they did not believe the expressiveness was appropriate--a judgment clearly related to the nurses' own cultural backgrounds. In addition, New England pain center physicians' preference for biological treatments was clearly related to the traditional world view of the culture of biomedicine. A study by Westbrook et al. (1984) compared evaluations of the same set of clinical patients' case histories, by Swedish and Australian health care providers (these were not chronic pain patients), The study found significant differences between the Swedish and Australian providers' evaluations and the treatment regimes they proposed. The authors attributed the dissimilarities to the different cultural backgrounds of the two sets of providers and the different health care models of the medical education systems in Sweden and Australia (Westbrook et al., 1984). Like Westbrook et al., our studies suggest a need to investigate how providers' cultural and educational backgrounds affect the way they perceive, communicate with, care for, and treat chronic pain patients. Given the obvious stereotyping of such patients in much of the current literature, one can readily imagine how educational training that defines chronic pain patients as a homogeneous group with significant "psycho-socioeconomic disorders" (Aronoff, 1985, p. 472) would influence providers' perceptions and treatment of pain sufferers. In biomedically oriented approaches to treating chronic pain, which were predominant at the New England pain center, there was a continued reliance on mind-body dualism. At the New England pain center, patients observed a clear preference on the part of physicians for using biomedical procedures despite the NE center's literature's emphasis on a multidisciplinary approach to chronic pain treatment in recognition of the interaction of mind and body. Often, New England center physicians suggested psychological treatment to the patient only after biomedical procedures failed to bring pain relief. Therefore the suggestion was interpreted by the patient as meaning the doctors no longer believed the pain was "real" (i.e. physical). In contrast, at the Puerto Rican center, physicians and patients viewed the mind and body as integrated in the pain experience. The Puerto Rican study confirmed Angel and Guarnaccia's (Angel
Cultural context effects on chronic pain and illness and Guarnaccia, 1989) assertion that in Puerto Rican culture "there is less of a separation of the psychological and physical senses of self" (Angel and Guarnaccia, 1989, p. 234) than in Anglo culture. Furthermore, there is a strong Anglo-cultural bias, as well as an element of social control, evident in the behavioral and cognitive approaches to chronic pain management, including the stress reduction component of the N.E. pain center program. These behavioral and cognitive approaches mirror American Anglo middle class values related to the importance of "working on a problem", taking individual responsibility for one's actions and problems, and remaining stoic and non-expressive in the face of pain and adversity. These approaches ignore differences in beliefs and values among patients of varied ethnic and cultural backgrounds. In addition, the patient is placed under tremendous pressure to change their own actions and attitudes in order to effectively treat their chronic pain (Holzman and Turk, 1986). Therefore, the patient now has an additional stress in conjunction with pain. When patients comply to this new regime, they often still experience pain (Spence, 1991); the pain source is no longer the treatment focus. And, if unsuccessful at repressing or changing their pain behaviors and attitudes, or at replacing their "negative" cognitive perceptions of the pain with more "positive" interpretations, patients feel guilt and a sense of personal failure. In some instances the patient is also perceived and treated as a failure by health care providers. The Anglo belief in individual autonomy (incorporated into modern biomedicine), which asserts that through their own efforts individuals can attain any goals, ignores the reality of life in a stratified, capitalist society such as the United States. Despite popular Anglo beliefs, economic and political forces and structural inequalities, as well as other social and physical environmental variables, have a significant impact on opportunities, circumstances, and health statuses of individuals. As Finkler notes: This (biomedical) model conceives of the person as an autonomous unit, independent of and isolated from other individuals and the social and cultural contexts. By not incorporating information about the family and the life world in which the patient is embedded, the medical consultation aggravates rather than allays the crisis for the patient (Finkler, 1993, p. 126). Thus, external factors affecting the patients and their families are ignored in almost all forms of treatment, whether in or outpatient chronic pain programs. In addition, occupational therapy treatments are similar to other areas of biomedicine *Upon discharge, inpatient chronic pain services often provide some follow-up visits and/or evaluations; however, long-range case management of discharged patients is not typical.
which generally focus on expensive mechanistic treatments of existing diseases rather than on prevention or work/lifestyle changes which enhance health status and quality of life (Waitzkin, 1993; Bates, 1990). An integrative biocultural approach is required to effectively address these problems in the effective treatment and health care delivery for chronic pain. This integrative biocultural approach would assess and attempt to modify physical impairments and sociocultural, occupational, economic, and health care elements of the overall environment (or "life world," as Finkler calls it) in which the pain sufferer lives, functions and often must be employed. It is true that such assessment and treatment could be expensive; however, in the U.S., we already expend vast sums of money on the care and treatment of chronic pain sufferers which yield, at best, mixed to poor long-term results. The studies we have described demonstrate that culture is one of the major factors affecting the way people perceive and respond to chronic pain in themselves and in others. As long as the cultural backgrounds of both patients and providers are ignored in assessment and treatment programs, expensive treatments will remain primarily ineffective. Long-term investment in educating health care providers in personal cultural self-awareness, awareness of the culture of biomedicine, and in cultural relativity may lead to more effective care and treatment, and ultimately save money and reduce human suffering. Culturally appropriate and language-appropriate health care and psychological services must be coordinated with more effective long-term strategies for rehabilitation. The cooperation of former employers is also essential in cases where the patient has the potential for returning to some type of meaningful work, if only part-time. The coordination of services will be a complex process and will require the services and close cooperation of a primary care physician or case manager for each patient.* As there is an under supply of general practitioners in the U.S. today, the patient often has no primary care physician to coordinate services, or to put the entire picture together and assist the patient in obtaining services and cooperation from the multiple agencies and institutions involved. Yet, the two studies described here and the studies of others suggest that continuity of care is highly beneficial to chronic pain patients (Tait et al., 1990, p. 146). We suggest that a case manager approach would be a cost-effective way of providing coordination of services while at the same time providing the pain sufferer with a supportive long-term advocacy relationship. Because of providers' frustrations when dealing with chronic pain, many of these pain patients have experienced significant distress from unsatisfactory relationships with providers, so the
Maryann S. Bates et al.
importance of a sensitive, knowledgeable, and supportive advocate cannot be over stressed. We also suggest that, in the next few years, as the U.S. restructures its health care system, the current fragmented system, with its many contradictions and disincentives for rehabilitation, needs to be replaced by an integrated system. Such a system should establish cooperation between services and provide a supportive context in which the pain sufferer can pursue rehabilitation or retraining without the fear of financial disaster from loss of necessary wage replacement compensation and health insurance benefits. Several specific recommendations in this area include: a reassessment and restructuring of occupational therapy as a service and profession; development of legislation that would require employers to accommodate partially disabled employees, such as chronic pain sufferers; and, the inclusion of a biocultural curriculum emphasizing m i n d - b o d y integration in the educational training of all the health professions. Acknowledgements--These studies were funded by two National Science Foundation Grants (nos. BNS8705615 and DBS-9120255); two Biomedical Research Support Grants (nos. SO7RR07149-16 and S07RR07149-19) from the Division of Research Resources, National Institutes of Health; a grant from Sigma Xi; several grants from Binghamton University, State University of New York; a United University Professions New Faculty Development Award; an award from the Naula M. Dresher Affirmative Action Leave Program of New York State and the United University Professions; and a grant from the University of Oklahoma. We also want to thank W. Thomas Edwards, Ricardo Mendez Bryan, George J. Armelagos, Ralph H. Faulkingham, Helen Ball, Yolanda Fernandez, Dominique Simon, Deborah Sellers, Lydia Robles-Calderon, Anna Tuti Mendez, Anna Tutica Mendez, Paulette Hackman, Esperanza V. Vald6s and all of the physicians, staff and patients of both centers for contributing to the successful completion and analysis of these projects.
Angel, R. and Guarnaccia, P. (1989) Mind, body and culture: somatization among Hispanics. Social Science & Medicine 28, 1229-1238. Armelagos, G. J., Leatherman, T., Ryan, M. and Sibley, L. (1992) Biocultural synthesis in medical anthropology. Medical Anthropology 14, 35-52. Aronoff, G. M. (1985) Evaluation and Treatment of Chronic Pain. Urban and Schwarzenberg, Baltimore. Bastida, E. (1979) Family Integration and Adjustment to Aging Among Hispanic American Elderly. Doctoral Dissertation, University Micro-Films, Ann Arbor. Bates, M. S. (1990) A critical perspective on coronary artery disease and coronary bypass surgery. Social Science & Medicine 30, 249. Bates, M. S. and Edwards, W. T. (1992) Ethnic variations in the chronic pain experience. Ethnicity and Disease 2, 63-83. Bates, M. S., Edwards, W. T. and Anderson, K. (1993) Ethnocultural influences on chronic pain perception. Pain 52, 101-112. Bates, M. S. and Rankin-Hill, L. (1994) Culture, control and chronic pain. Social Science & Medicine 39, 629645.
Bates, M. S., Rankin-Hill, L., Sanchez-Ayendez, M. and Mendez Bryan, R. (1994) A cross-cultural comparison of adaptation to chronic pain among Anglo-Americans and native Puerto Ricans. Medical Anthropology 16, 133. Bellah, R. et aL (1985) Habits of the Heart. Individualism and Commitment in American Life. University of California Press, Berkeley. Bonica, J. (1985) Introduction. In Evaluation and Treatment o f Chronic Pain, ed. G. M. Aronoff, pp. xxxi-xliv. Urban and Schwarzenberg, Baltimore. Buitrago, C. (1966) La investigacion social y el problem de los investigadores puertorriquefios en las ciencias sociales y disciplinas relacionades en P.R.. Revista de Ciencias Sociales 9, 93-103. Buitrago, C. (1970) Estructura social y orientaciones valorativas en Esperanza, Puerto Rico y el Mediterraneo. Editorial Edil, San Juan. Buitrago-Ortiz, C., Pacheco-Maldonado, A. and GarrigaPico, J. (1981) La cultura como contexto, proceso, producto y proyecto de la accion humna. Revista de Ciencias Sociales 23, 253-264. Burgos, N. and Diaz Perez, Y. (1986) An exploration of human sexuality in the Puerto Rican culture. Journal of Social Work and Human Sexuality 4, 135-150. Canino, G. et al. (1987) Sex differences and depression in Puerto Rico. Psychology of Women Quarterly II, 443 459. Canino, G., Braveo, M., Rubio-Stipec, M. and Woodbury, M. (1990) The impact of disaster on mental health: prospective and retrospective analyses. International Journal of Mental Health 19, 51-69. Canino, I. A. and Canino, G. J. (1980) Impact of stress on the Puerto Rican family. American Journal of Orthopsychiatry 50, 535-541. Canino, I. A., and Canino, G. J. (1993) Psychiatric care of Puerto Ricans. In Culture, Ethnicity and Mental Illness, ed. A. C. Gaw, pp. 467-499. American Psychiatric Press, Washington, DC. Departamento de Salud (1989) Ofinica de Planificacion, Evaluacion e Informes---Boletin lnformativo (Serie D6:2). Departamento de Salud, Santruce, Puerto Rico. Departamento de Trabajo (1989) Encuesta de Vivienda. Departamento de Trabajo, San Juan. Duany, J. (1988) Cultura y personlidad en Puerto Rico: para una psicologia de la identidad nacional. Homines 12, 180-185. Dworkin, R. H., Richlin, D., Handlin, D. and Brand, L. (1986) Predicting treatment response in depressed and non-depressed chronic pain patients. Pain 24, 343353. Edwards, W. (1985) Intravenous Lidocaine in the management of various chronic pain states. Regional Anesthesia 10, 1-6. Elton, D. et al. (1979) Clinical Measurement of Pain. Medical Journal of Australia 24, 109-111. Finkler, K. (1993) Physicians at Work, Patients in Pain. Westview, Boulder. Fordyce, W., Roberts, A. and Sternbach, R. (1985) The behavioral management of chronic pain: a response to critics. Pain 22, 113 125. Fotopoulos, S. S., Graham, C. and Cook, M. 0979) Psychophysiological control of cancer pain. In Advances in Pain Research and Therapy, ed. J. Bonica, Vol. 3, pp. 231-243. Raven, New York. Glanze, W. D. (Ed.) (1986) Mosby's Medical and Nursing Dictionary, 2nd edn. Mosby, St. Louis. Guarnaccia, P. J. (1993) Ataques de nervios in Puerto Rico: culture-bound syndrome or popular illness?. Medical Anthropology 15, 157-170. Hahn, R. and Gaines, A. (eds) (1985) Physicians of Western Medicine. Anthropological Approaches to Theory and Practice. Reidel, Boston.
Cultural context effects on chronic pain and illness Harwood, A. (1977) Rx. Spiritist as Needed. A Study o[ a Puerto
Wiley, New York. Holzman, A. D. and Turk, D. C. (eds) (1986) Pain Management, Pergamon, Oxford. Kaufman, S. (1988) Toward a phenomenology of boundaries in medicine. Medical Anthropology Quarterl), 2, 338-354. Koss, J. (1980) The therapist spiritist training project in Puerto Rico: an experiment to relate the traditional healing system to the public health system. Social Science & Medicine 14, 255-266. Koss, J. (1987) Expectations and outcomes for patients given mental health care or spiritist healing in Puerto Rico. American Journal of Psychiatry 144, 56-61. Koss-Chioino, J. (1992) Women as Healers, Women as Patients. Westview, Boulder. Lahuerta, J., Smith, B. and Martinez-Lage, J. (1982) An adaptation of the McGill Pain Questionnaire to the Spanish language. Schmerz 3, 32 34. Lauria, A. (1964) Respeto, relajo, and interpersonal relations in Puerto Rico. Anthropological Quarterly 37, 53-67. Lipton, S. (1990) Introduction. In Advances in Pain Research and Therapy, eds S. Lipton, E. Tunks and M. Zoppi, Vol. 13, pp. xxvii-xxxiii. Raven, New York. Lock, M. and Gordon, D. (1988) Biomedicine Examined. Kluwer, Dordrecht. Marin, G. and Triandis, H. (1985) Allocentrism as an important characteristic of the behavior of Latin Americans and Hispanics. In Cross-Cultural and National Studies in Social Psychology, ed, R. DiazGuerrero, pp. 85-104. Elsevier, Holland. Marin, G. and VanOss Marin, B. (1991) Research with Hispanic Populations. Sage, Newbury Park. Melzack, R. (1975) The McGill Pain Questionnaire: major properties and scoring methods. Pain 1, 277-299. Melzack, R. (1984) Measurement of the dimensions of pain experience. In Pain Measurement in Man, ed. B. Bromm, pp. 327-347. Elsevier, Holland. Melzack, R. and Torgenson, W. (1971) On the language of pain. Anesthesiology 34, 50-59. Merskey, H. (1979) Pain terms: a list with definitions and notes on usage, recommended by the IASP subcommittee on taxonomy. Pain 6, 249-250. Merskey, H. (1986) International Association for the Study of Pain, classifications of chronic pain. Pain 3, SI-$225. Mintz, S. (1975) Puerto Rico: an essay in the definition of a national culture. In The Puerto Rican Experience, Status ~1 Puerto Rico." Selected Background Studies, United States-Puerto Rico Commission on the Status of Puerto Rico, pp. 339-434. Arno, New York.
Molina, J., Coppo, C. and del Docente, P. (1984) The Argentine Pain Questionnaire. Abstracts of the IVth World Congress on Pain. Pain Supplement 2. Morales Carrion, A. (1983) Puerto Rico A Political and Cultural History. Norton, New York. Payer, L. (1988) Medicine as Culture. Penguin Books, New York. Prieto, E. et al. (1980) The language of low back pain: factor structure of the McGill Pain Questionnaire. Pain 8, 11 20. Ramirez, R. L. (1973) Rituales politics en Puerto Rico. Revista de Ciencias Sociales 17, 309-323. Ramirez, R. L. (1992) Power, pleasure and pain: Puerto Rican male discourses. Paper presented at the 91st annual meeting of the American Anthropological Association, San Francisco, December 2-6. Reyes, J. and Inclan, J. (1991) A Stud), of the Mental Health
M.E.R.T.I. Minority Education Research and Training Institute, Monograph No. 1, Minority Education, Research and Training Institute at Metropolitan Hospital, Community Mental Health Center, New York City Health and Hospitals Corporation, New York. Robles, R., Alegria, M., Martinez, R., Vera, M. and Munoz, C. (1982) Social integration and health among Puerto Rican return migrants. Puerto Rico Health Sciences Journal !, 119-125. Rodriguez, C. E. (1991) Puerto Ricans Born in the USA. Westview, Boulder. Rogler, L., Cortes, D. and Malgady, R. (1991) Acculturation and mental health status among Hispanics. American Psychologist June, 585 597. Sanchez-Ayendez, M. (1984) Puerto Rican Elderly Women: Aging in an Ethnic Minority Group in the United States.
Doctoral Dissertation, University of MassachusettsAmherst, University Micro-Films, Ann Arbor. Sanchez-Ayendez, M. (1988) Puerto Rican elderly women: the cultural dimension of social support networks. Women and Health 14, 239-252. Sanchez-Ayendez, M. (1993) Informal carers to the elderly: a holistic perspective. Paper prepared for the World Development Bank, World Development Report, presented at the Consultation Meeting on Health of the Elderly, Oslo, Norway, November 1992. Schensul, J., Nieves, I. and Martinez, M. (1982) The crisis event in the Puerto Rican community: research and intervention in the community/institution interface. Urban Anthropolog.v 11, 101 128. Seda-Bonilla, E. (1964) lnterraccion social y personalidad en una communidad de Puerto R&o. Ediciones Ponce de Leon, San Juan. Seda-Bonilla, E. (1970) Requiem por una cultura: ensayos sobre la socializaeion del Puertoriqueno en su cultura )' en ambito del poder neocolonial. Editoral Edil, Rio Piedras,
Puerto Rico. Spence, S. (1991) Case history and shorter communication. Behavioral Research and Therapy 29(5), 503-550. Stein, H. (1990) American Medicine as Culture. Westview, Boulder. Steward, J., Manners, R., Wolf, E., Padilla, E., Mintz, S. and Scheele, R. (1956) The People of Puerto Rico: A Stud~v in Social Anthropology. University of Illinois Press, Urbana. Szalay, L. and Diaz-Guerrero, R. (1985) Similarities and differences between subjective cultures a comparison of Latin, Hispanic and Anglo Americans. In CrossCultural and National Studies in Social Psychology, ed. R. Diaz-Guerrero, pp. 105-133. Elsevier, Holland. Tait, R., Chibnall, J. and Richardson, W. (1990) Litigation and employment status: effects on patients with chronic pain. Pain 43, 37-46. Tollison, C. D. et al. (1989) Comprehensive pain center treatment of low back workers' compensation injuries. Orthopedic Review 18(10), 115 126. Tropman, J. E. (1989) American Values and Social WelJare. Prentice Hall, Englewoos Cliffs, NJ. Turk, D., Rudy, T. and Salovey, P. (1985) The McGill Pain Questionnaire reconsidered: confirming the factor structure and examining appropriate uses. Pain 21, 385397. Waitzkin, H. (1993) The Second Sickness Contradictions o[" Capitalist Health Care. Free Press, New York. Westbrook, M. T., Nordholm, L. and McGee, J. (1984) Cultural differences in reactions to patient behavior: a comparison of Swedish and Australian health professionals. Social Science & Medicine 19, 939-947. Zayas, L. and Palleja, J. (1988) Puerto Rican familism: considerations for family therapy. Family Relations 37, 260- 264.